Developmental Disability Presentation Version.ppt


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  • Throughout the short course we will be applying ICF model principles to dd in particular focusing on the environmental aspect. To recognise the importance of environment in physiotherapy practice for developmental disability. Main focus is physiotherapy but we will look at the MDT involvement Clarification!! Age: paeds because at the age there is the most service involvement & time with physio. Jobs in the area Disabilities chosen: tried to make skills applicable to all disabilities. In some parts focus is on CP & Autism – most prevalent physical & intellectual disabilities Disability Act 2005 - Assessment of Need Process 0-5 yrs 2007 EPSEN Act 2004 - Assessment of Need 6-18yrs 2009 Assessment of Need will be available to all adults no later than 2011
  • Places equal value on promoting functional activities & facilitating an individuals full participation in all aspects of life Focuses on components of health rather than consequence of disease. The ICF has several uses… Clinical Tool Aiming to use this Model of care to facilitate clinical thinking, hence this is how we intend to apply the model. Relevance to physio…. Research Tool Educational Tool Statistical Tool Social Policy Tool
  • Open to page x of the handbook & then discuss Very interactive model.. 1 thing influences another…. We, as physios, are generally proficient at identifying & treating impairments. However, the ICF model highlights the importance of considering the associated factors influencing the development. An environment with barriers, or without facilitators, will restrict the individuals performance’, we could link this idea with the need to facilitate coping, family and involvement and address challenging behaviour as these will be the facilitators in the child’s environment. Failure to involve the environmental factors in dd intervention, particularly physiotherapy aspect will significantly impact on the other domains eg… To a lesser degree we will focus on personal factors such as social background, upbringing, lifestyle. These link in with the family as the environmental aspect. Justification: Facilitating the family is an indirect intervention for the child as the family are the primary environment for the child’s development. Involving the family can help the child achieve greater functional gains than are seen with tradition impairment based therapies. Disability Act 2005 - Assessment of Need Process 0-5 yrs 2007 EPSEN Act 2004 - Assessment of Need 6-18yrs 2009 Assessment of Need will be available to all adults no later than 2011
  • Prior to looking at the environmental aspect of the ICF, we will give a basic overview of CP & Autism & give resources where you can find more information about developmental disabilities. This is information you can read yourself. Basic information about an impairment is a pre-requiste for looking at environment.
  • Importance of acknowledging and knowing risk factors is for Ax.- Relevance Risk factors are described as: “Characteristics which increase the likelihood of an individual having or developing a problematic condition” ( Tomblin, 1996) Risk indicates an association between the characteristic and the outcome, but it does not indicate cause. Once a risk factor is identified further investigation needs to occur and this can also determine the relationship and whether it is causal. The risk factors can be defined as either maternal or child risk factors. The number of which varies depending on the source. There are 14 evidence based risk factors with 8 being class as maternal and 6 being child risk factors. LINK TO ICF maternal factors & environment. Women with an education below the high school level were 8.9 times more likely to have a child with mild intellectual disability compared with women who had more than 12 years of education. (Chapman et al, 2008) At ages <20 and > 36 there were significant increases in the risk of a child being born with developmental disability (Abel et al, 2002) Significant socioeconomic effects were found, with higher income and education dramatically increasing risk of low birth weight (Chapman et al, 2008) Smoking and drinking during pregnancy have adverse effects on the developing foetus as the alcohol or dangerous chemicals in tobacco smoke cross the placenta & reach the unborn child. Maternal medical history of anaemia, cardiac or lung disease, diabetes, genital herpes or obesity may increase the risk of a child being born with a developmental disability (Delgado et al, 2007). Smoking and drinking during pregnancy have adverse effects on the developing foetus as the alcohol or dangerous chemicals in tobacco smoke cross the placenta & reach the unborn child. Maternal medical history of anaemia, cardiac or lung disease, diabetes, genital herpes or obesity may increase the risk of a child being born with a developmental disability (Delgado et al, 2007).
  • Passive and active muscle tone
  • MRI is superior to ultrasound due to a much higher sensitivity
  • Video for clinical clues (toe-walking or scissoring & reflexes or postural reactions) look at handbook at same time.
  • Video from website have two tabs open and pre-set at certain points (Aideen)
  • If we want to involve class here could ask them the knock-on effects of low education level in terms of other maternal risk factors? Moro reflex @ 2 months, rooting & tonic neck reflex @ 4 months
  • I’m sure you;ve all identified that Barry has a diagnosis of autism however for his parents…. Despite the fact that an early and definite diagnosis is perceived as a shock by most parents they may in the long run cope with the situation more easily compare to those parents without a clear assignment not only medically but in emotional terms 6 key areas parents feel a diagnosis impacts Label: many parents want a label or explanation for themselves. ``Well, I think a lot of people, they'll say, what kind of handicap does [he] have, or what is it? I think a lot people like to be able to classify. . . . If you said to them, he has Down syndrome, or he's autistic, you know, all the stuff that make himÐthere is a whole painting that emerges of things that they've heard about Down syndrome or autism or any other syndrome that you might mention Aetiology: assess the risk of recurrence in subsequent pregnancies Prognosis: future threats to health, realistic estimates of developmental boundaries and goals Treatment options: feel a diagnosis will improve overall treatment stratagies Acceptance: delay parents acceptance of the permanence of the Social support: isolation, access to support and support groups? With an uncertain diagnosis most if not all of these are lacking, for some disabilities they do have a label but take time++ to diagnose! All these thing could be missing at first diagnosis attempt. Down syndrome v autism or CP. May take longer to move through the grieving process, may not full accept the child has a developmental disability for life, may not be able to begin process until diagnosis These all influence coping and this
  • I would equate coping with the analogy of a weighing scales, where the stressors are on one side and the strategies and resources to overcome those stressors are on the other. Its about being able to outweigh the stressors. “ Coping is the ability to maintain equilibrium in spite of adversity” (Hastings et al 2005) Lazarus, R. S. (1991). Emotion and adaptation . London: Oxford University Press.
  • The benefits of parent coping were established by Boyd, who found that parents with good coping strategies demonstrate: Better personal well-being – This is important because it has been noted that p arents of children with DD have ↑ incidence of depression, anxiety, stress, emotional distress & lower self-esteem. If these problems remained then the family environment would not be optimal for the child’s development. Thus as a result the parents become Increasingly involved in therapy Show more positive interactions in parent-child play and more positive attitudes about their child. This all results in ….. Higher scores on developmental tests So from these findings it is clear from this that parental coping is an important mediator in providing the appropriate immediate environment (i.e. the family) for the child’s development. This is the overall resultant benefit of parental coping. Parents of children with DD have more health problems, ↑ incidence of depression, anxiety, stress & emotional distress & lower self-esteem Parents of children with DD also have ↑ risk of relationship and communication problems, separation/ divorce and social isolation (Pelchat et al 1999) Not an optimal environment for any child….. Optimising the environment in line with the ICF model is necessary to optimise the outcomes for the child Very often in families who have a child with DD, the multiple stressors can cause relationship problems between parents or between parents & siblings (marital breakdown etc), stress & depression
  • An understanding of the common initial reaction of parents and models of adjustment can help professionals to provide appropriate support over time
  • One parent recalls how when they first received the diagnosis that …. This really illustrates the effect of a sudden major change on a family’s life
  • These negative responses to the child’s diagnosis (previous slide) may be brought on because they may feel that they have lost a ‘perfect’ child and a ‘normal’ parenting role. This is all part of the bereavement process. (link to next point) Various models have been suggested based on the stages of bereavement – these are useful in understanding the stage parents are at so appropriate coping strategies for that stage can be facilitated. Add model of bereavement to handbook
  • Comment: Link in with bereavement model? If so have yellow box for handbook. Study on parents of children diagnosed with any developmental disability The crisis engendered by the first intimation or diagnosis that something is wrong with their child is probably the parents most difficult and shocking experience In most cases parents initial reaction is likely to be negative and similar to those related to bereavement Say that these are responses that we should look out for in the early stages (analysis and interpretation)
  • Flipchart one person writing 30 seconds to think & write Picture Ask a few people to offer suggestions Did anyone write down the words joy, happiness, inspiration Do you think your own attitudes may even contribute to further stress and difficulty for families? Our attitudes are often deeply rooted within us. So we need to be aware of our own attitudes regarding disability and try to see the opportunities for personal growth and development rather than focusing on the negative aspects
  • Link to PT (Analysis & Interpretation) HCPs often experience the anger and blame of parents Important to understand and recognise these emotions Allows you to support parents when they are angry, fearful, depressed Cautious when applying theories of grief Thus it is important to be aware of how we communicate with the family as this can influence their coping. In the next section we will be looking at how family coping can be assessed.
  • ICF link environment & personal factors In the Ax of family coping it is important to determine if the coping process will be positive or negative in the early days post-diagnosis. If this is achieved strategies can be implemented early on to facilitate the parents particularly and the family’s adaption to the situation. It is important to examine the relevant factors influencing family coping in the context of their daily life and these include: Availability of internal and external resources and strategies to cope and Independent factors It is also important to recognize that family’s experiences change over time and thus they must be continually monitored in terms of their coping. The importance of appropriately assessing the family’s coping ability cannot be understated as it will have an effect on your treatment plan. If a family has poor coping due to a number of factors then they will experience more stress and as a result find it more difficult to carry out or be involved in the treatment. Thus, by assessing the family’s coping ability two benefits can be achieved, firstly strategies to improve coping can be implemented and secondly suitable treatment plans can be designed, which are more likely to improve the outcomes of the child and family.
  • Factors influencing family coping can be divided up into two categories resources & strategies used & available to the family, & independent factors that the family or person cannot control. (However, these factors can be mediated by the resources & strategies if sufficient.) For the resources & strategies it is important to assess the availability & how the family uses them. For the independent factors assessment involves considering how these factors impact on the family’s ability to cope. Those (highlighted in red/underlined) will be discussed further as they are considered most important.
  • The aim of the service is to meet the coping needs of the family. However as each family’s situation is unique the service must be flexible in meeting these needs. Therefore it is important to consider how the service is provided and how it impacts on the family’s ability to cope. King et al found that a FCS is best able to meet the coping needs of the family as it results in less stress, better emotional well being and greater satisfaction with the service. The following aspects of service provision are considered important in influencing coping through the service: Firstly, the ability of the service to meet the unmet needs of the child and family for example in terms of info, transport issues, housing adaptations etc. Thus in the assessment of the family it is important to identify their needs on a continual basis and identify the resources of the service that can meet these needs. A primary need that is often unmet is sufficient information to answer the concerns of the parents re: the child’s diagnosis whether it be ambiguous or not, the child’s future and the resources that the service will be able to provide. ? Inclusion here (strategy): Delivering the information in a timely (early-on to help with initial coping) and in an appropriate manner (so the parents understand) are very important. Parents considered it important for the service providers to acknowledge the child as valuable, which included having hope for the child’s future by showing the parents their potential and treating them as worthy of help by doing everything possible to meet their needs. This will be strongly evident in the therapist’s interaction with the child. Similarly the therapist’s interaction with the parent must acknowledge the important role of the parent in the child’s treatment (this may increase involvement). This may increase their confidence as a parent, which was considered important in coping. ? Inclusion here: This can be achieved by the parent gaining confidence as a parent (through positive reinforcement) and promoting a sense of control in the parent by using behaviours that are positive and productive, competency producing, participatory and accepting. ( more like a strategy ) Finally, if a child with greater disability has to attend more locations to receive the services then a greater burden is placed on the family in terms of transport. This is particularly difficult when the parents don’t have sufficient means of transport i.e. a car, which is highlighted in some studies. The net result is a fragmented service. This is an important aspect to considering when assessing the resources available to the family compared to the manner of service provision, in order to match them. References: Meeting unmet needs – Knussen & Sloper 1992; Providing info – Heaman 1995; Kerr & Macintosh 2000; Acknowledging child and parent – Lindbald et al 2005 Providing centralized service – Law et al 2003 Strategies: Empowering interactions between parent and professional resulted in enhanced self-efficacy and personal control – think of practical ways of achieving this for Physios
  • Families that cope well have extensive formal and informal social networks according to Tannila et al. Formal social support is another resource the health service can provide to the family. The degree of formal support from the service is determined by factors such as the consistency, quality and range of therapy provided according to the family’s perceived needs for the child and meeting the information and skills needs of the family to cope. Informal sources such as the care-givers spouse (usually the husband), wider family and friends are important social supports for the child and family. According to the research an effective social network is determined by it’s size and quality. Both of these refer to the degree of emotional and practical support received. According to Knussen & Sloper close confident and family relations are the most important. This refers to emotional support, which is considered most important from the main care-giver’s spouse. This is something the Physio may not be able to assess accurately, and therefore should consult with the psychologist and social worker on. However, clues may be evident re: the spouse’s involvement in terms of attending Rx and report of practical support at home. If the child’s care-giver is a lone parent, this is an important consideration when assessing the influence of social support on their coping. Friends and family are also provide emotional and practical support by helping with care-giving tasks. Therefore it is important to assess the degree of help the main care-giver receives to determine the level of social support. Casual questioning can assess this, and some examples are given in the handbook on page …. Benefits (?relevance here – put in benefits slide) The importance of assessing level of social support both formal and informal is qualified by the potential gains for the family such as: Lower parent burden Better parent well-being (King et al 1999) healthier family functioning marital adjustment increased levels of problem-focused coping higher involvement (N.B.) (Gavidia-Payne & Stoneman 1997) Strategy: from service - adaptive training courses useful (Taanila et al 2002)
  • According to Taanila et al family cohesion & functioning refers to the co-operation within the family in daily activities that leads to the sense of togetherness or cohesion. Therefore it is clear that maintaining normality to the best degree possible is important. Since the mother is usually the main care-giver maternal employment has been highlighted repeatedly in the literature as vital for coping. According to Knussen & Sloper this is due to having additional social contacts, roles and focus outside the child and family. Maintaining normality also involves continuing with hobbies, social events and other activities of daily life for example the parents having time alone together. Suggested questions are in the handbook on pg. ? that physios may ask to assess the family’s maintenance of normal life. Strategy: if appropriate (according to the family’s resources) suggest that they seek out new activities. Marital adjustment is considered to occur when husband and wife agree on major issues of importance and have common interests and activities. This may be more difficult for a physio to assess, but some suggested questions are listed in the handbook. Consultation with the psychologist and social worker may assist in determining the degree of marital adjustment. Spousal involvement involves sharing equally the house-work and caring-giving activities. Since the mother is usually the main care-giver, it is the father’s involvement that needs to be assessed. As mentioned before, attendance of Rx sessions or questions listed in the handbook may help you as a Physio determine this. Studies have also indicated that if the parents have a similar initial reaction to the diagnosis of optimism and a positive outlook for the child’s future then, their coping is likely to be better. Assessment of this early on is important in conjunction with the psychologist. Suggested questions for assessing all these factors from a Physio perspective are available in the handbook on pg. ?. (instead of repeating it after some of the points.) Strategy: Emotional activities and openness: Parents taking time from their everyday duties for rest/relax or do something together, express their thoughts and feelings to each other and outside the family (could be suggested by Physio)
  • State how there can be so many different mixes of personality variables like these faces or something. Personality variables are also known as intrapersonal resources and have been shown to have a stronger effect on parental stress than other influences such as severity of the child’s disability and demographic factors. As a result the listed traits have been associated with improved coping mediated through reduction of stress. Consultation with the psychologist and ?social worker will be important in assessing these variables. Briefly, just to be aware of what each involves: Sense of coherence is an umbrella term that encompasses locus of control, self-esteem, self-belief etc. and essentially describes the persons belief that they can control the situations in their lives. Emotional stability refers to the parent’s ability to make positive attributions about themselves, others and their life events resulting in higher levels of subjective well being. Attributes of hope and a positive attitude are associated with emotional stability. Assessment of the parent’s attitude and emotional response to difficult situations is indicated. Extraversion is a personality trait that has been associated with being gregarious and more assertive, and as a result the person has greater social network which assist them to cope. Agreeableness is a personality trait that has dimensions of generosity, empathy, helpfulness and optimism. These dimensions contribute to the reduction of stress and better coping. Finally, the coping strategy used is mediated by the above factors. Use of an emotion-based coping strategy is associated with a passive approach similar to adaptation. Problem based-coping has been shown to result in less maternal distress as it is a more-active approach. All these personality variables are associated with protecting parents of developmentally disabled children against parenting stress.So you could consider these attributes as the resources that tip the scale against the influence of the stressors. Some suggested Ax questions that a Physio could use to determine how the parents personality variables are influencing their coping are in the handbook on pg. ?. Refs: Sense of coherence – Margalit & Kleitmann 2006; Emotional stability – Vermaes et al 2008; Rentick et al 2006 Extraversion – Sloper & Turner 1993; Vermaes et al 2008; Agreeableness – Vermaes et al 2008 Coping strategy – Knussen & Sloper 1992
  • It is important to be aware of the independent factors that influence the ability of the family to cope as part of your overall analysis of the family’s coping ability. The nature & degree of the child’s disability can result in increased stress for the family if there are behavioural problems as this has been shown to affect their social networks and availability of services (King et al 1999). (Thus it is important to address behavioural issues to facilitate coping, which Aideen will discuss later.) A severe level of physical impairment was associated with more difficulty in caring for the child. Mental function was not considered as important, although communication difficulties were noted as a coping issue. The care-giving parent which is predominantly the mother, generally experience more stress as they must carry the weight of the child-rearing process which includes dealing with the child’s daily problems, bringing child to appointments etc. As a result they have a more demanding role, especially when there is no outlet from family life in the form of employment. Maintenance of traditional gender roles, where the husband works and the wife stays at home to mind the child should be noted in the assessment of the family situation, as it is a likely stressor for the mother. Socio-economic status is a strong determinant for coping ability as demographic factors such as education level, income etc. determine the material resources available to the family such as finance, good housing, transport etc. Having sufficient money to meet the needs of the child is a concern expressed by families. This may also refer to having enough money for getting necessary equipment for the child. Experience of stress & coping is an area where the psychologist will be best suited to Ax.It is strongly linked with personality variables. The two factors that contribute to this are the parents experience of strain in their life events and consequently how they overcame that strain and what their resultant satisfaction is with their life. Thus it is important to consult with the psychologist on this issue in determining parents degree of coping ability. Some relevant Ax questions are in the handbook on pg. ?. Refs: nature & degree of the child’s disability – Rentick et al 2006 Gender role – Gray 2003 Socio-economic status – King et al 1999; Heaman 1995 Experience of stress & coping – Rentick et al 2006
  • Comment: Put in with the factors affecting coping section or maybe in the handbook? Might fit well in the slides at the end of the section as a recap of the factors. In considered family stress and family coping, it is important that stress in families of children with DD is multifactorial. It is necessary to consider all the different factors and not just one as there may be other unknown stressors effecting the family. Each family is unique & individual Consider gender differences: Females use emotional coping strategies Males use problem-solving coping strategies Coping strategies change over time In the younger years, parents use more problem-focused coping strategies In later years, parents seek more emotion-focused coping strategies (Gray 2006) Consider the delivery of information Oral information is preferred by all Oral information may be especially relevant for parents of a lower education level (Pain 1999) e.g. child characteristics –level of disability, age, gender Other life stressors e.g. job, money, relationship issues So how can we help a family to cope. We can tap into a few of these areas and guide parents in their search for resources and support to influence a positive parental outcome
  • Initial Coping: (On consultation with the psychologist Marie feeling:) Guilt, shock confusion & overwhelmed (experience with of stress & coping) also external locus of control (depending on others) not emotionally stable Factors influencing her coping: Lone parent, unemployed Nature & degree of disability - as mentioned in previous case study slide re: diplegia etc.
  • Barry has received a definitive Dx of autism & according to the psychologist Ax of the family: Relieved to finally have a Dx Highly motivated to be involved (in all aspects of Barry’s care thus they will be using a problem-based coping, high internal locus of control etc.) Living in rural location (70 miles from closest centre). Have 2 older children Family enjoy outdoor activities – difficult to maintain normal daily life stuff
  • To address the factors negatively influencing family coping facilitators such as information giving, promotion of parental control, advice and providing support have all been recommended in the literature. These facilitators are like you’re box of tools for fixing the coping problems the family experiences. Problem based coping strategy considered more effective in dealing with stressful situations than emotion focused strategy (refer to through-out how the strategies can facilitate problem-based coping)
  • Information seeking is a problem-solving strategy Information is commonly sought in the initial period after a child’s diagnosis Delivering the information in a timely (early-on to help with initial coping) and in an appropriate manner (so the parents understand) are very important. Aim to achieve shared understanding between parents (shown to be present in high coping families – Taanila et al 2002), re: the family situation. This can be achieved through informing them about the Dx, prognosis and the services available. How does information help family coping? Helps parents plan & feel more in control Helps parents take a proactive approach to treatment & decision making Helps parents cope emotionally Helps parents access services & benefits Info helps because knowledge of Dx and Rx gave a realistic outlook and optimistic attitude towards the child’s future, thought that their child would be able to cope. acceptance helped in a similar way. (Taanila et al 2002) Provide information to parents about local organisations/ support services: allows parents to be flexible with their working conditions (Taanila et al 2002) Educate parents about the available supports and the benefits thereof Information regarding benefits and services Areas parents want info on : Medical information about their child’s condition Resource: websites, support groups EXAMPLES Daily care info Regarding manual handling, nursing tasks, the use of different equipment Resource: Training from professionals How to carry out treatment programs - demonstration Parents need information and instruction on how to carry out a HEP effectively and without interfering in the family dynamics or causing further stress Parenting information Resource: Workshops or classes for parents including topics such as how to discipline their child, how to cope with the child’s challenging characteristics (for parenting skills – Lin 2000) this can promote a positive family appraisal as Lin (2000) suggests, as parents will have a more positive attitude towards the situation as they feel they can deal better with the situation as they have more knowledge and skills to do so.
  • Swapped Hastings and Boyd refs. Similar to this quilt I like to think that we can weave the positives into our communication with parents for example …… Swapped Hastings and Boyd refs. NOTE: Mothers consider their spouse to be their most important social support Provide positive feedback & praise to each family member for their efforts (? Ref): gaining confidence as a parent Empowering interactions using behaviours that are: Positive & productive Competency producing Participatory Accepting Aim of these behaviours is to encourage self-efficacy. With these behaviours the aim should be to actively involve the parents, provide them with knowledge, teach them new skills and encourage them to make decisions as these activities enhance self-efficacy and personal control (King et al 2004) Using these behaviours is aimed at promoting facilitative personality variables such as a s trong sense of coherence (locus of control), emotional stability, extraversion and agreeableness through empowering interactions resulting in enhanced self-efficacy and personal control (King et al 2004). Also p arents felt it was important to gain confidence as a parent which involved being acknowledged as an individual and the child’s carer (Lindbald et al 2005). These behaviours also i nvigorate or empower the family to allow them and their child to live their lives as normally as possible (should be the aim of the support given by health professionals). Reframing the situation: (change how situation is viewed or defined – CBT – changing coping approach) Promote the positive aspects of the situation Provide positive feedback to the family’s efforts Facilitate communication within the family Open honest communication allows families to share their thoughts & feelings with each other
  • Swapped Hastings and Boyd refs. Promote: Normal activities & routines within the family ( In high coping families the they maintained their activities and found new ones, shared housework and caring – Taanila et al 2002). Stressor for both parents is not having leisure time for themselves (Heaman 1995) Emotional activities and openness (Find Ref): Parents taking time from their everyday duties for rest/relax or do something together, express their thoughts and feelings to each other and outside the family Why good family co-operation helped: relationship between family members and the cohesion (togetherness and co-operation) were very important – being together and doing things together increased family cohesion and ability to cope – spouses supported each other and shared caretaking and housework equally (Taanila et al 2002). Also continue with hobbies where and when possible Encourage parents to indirectly develop social networks: Advise parents to seek out community resources Advise parents to accept help from others especially family and friends - informal support from family and friends was very important in managing everyday life (decreased feeling of being overwhelmed – Rentnick et al 2006) and in high coping families extensive formal and informal social networks were evident (Taanila et al 2002) This can also be done by taking up new activities as a family or just the parents Extended family, friends, neighbours Religious organisations (Therefore important to Ax parents beliefs & support systems they commonly use) Be aware that parents may benefit from spiritual guidance Suggest to parents that the church may be a possible resource in helping parents interpret the challenges of parenting a child with disabilities
  • Service provision: Good support at diagnosis/birth important to help parents to cope with situation (uncertainty) – support was lacking in the months following also – feelings of isolation and worries about the future were common (Kerr & McIntosh 2000) It is important that services are co-ordinated to accommodate the working mother. Cost of care while mother is working can be an additional stressor – service may be able to accommodate this by providing a schooling service (Knussen and Sloper 1992) Where the programme helped the mothers to contribute effectively to their child’s development they experienced decreased levels of stress (Margalit and Kleitman 2006) Parent-Parent support groups: Contact with other parents with children that had a similar disability helped as the parents realised they were not alone , found someone who understood their situation, got a glimpse into the future, felt they could then offer support to other parents and they reach a stage where they required less support Provides support from parent with children with similar disabilities Allows parents learn from others experience (from a person who truly understands) Helps parents realise they are not alone Allows parents to openly discuss issues in a safe environment Can offer parents a glimpse into the future by meeting older children with a similar disability Offer a setting to do this e.g. at the treatment centre Organise the group to include parents with children who are newly diagnosed & “veteran” parents who have adapted well to their child's disability & don’t have negative attitudes re: ? Respite Care: High levels of parental stress ↑ risk of dysfunctional parenting behaviour Respite care: Gives caregivers a temporary break from care-giving duties Allows caregivers participate in social activities Lessens caregiver stress and burnout Respite care improves: family functioning, satisfaction with life, ability to cope with stress & the attitudes of the family towards the family member with DD ↑ use of respite care among families with children with very low functional levels and multiple medical conditions (Cohen and Reed 2002, Damiani et al 2004) Resource:,, public health nurse Individual, family or marital counselling – spouses are the most important social support (shown that if parents have a supportive relationship then coping is improved).
  • The next section we are going to cover in today's presentation is challenging behaviour. As a therapist challenging behaviour can be a barrier to facilitating families of children with developmental disabilities, therefore it is an important topic to address within our short course. Has anybody experienced a form of challenging behaviour while working with paediatrics on placement? Would you like to describe it for us?
  • During this section we will cover the different types of challenging behaviour, discover the function of challenging behaviour and learn different strategies to address challenging behaviour. If challenging behaviour is an issue with a patient in the future, you will have the knowledge and skill to competently and confidently deal with it and prevent reoccurrence.
  • Formal definition & CB Foundation Handbook Comment: Maybe the text of this slide could go with the previous one. I think we should go with just one slide on what CB is, because we pad around that slide with the info from the other. Plus we might overload them if we give them too many definitions. Physically dangerous & can impede learning or normal activities - Link in ICF aspect activities and participation The frequency and intensity of these behaviours vary greatly with each individual If the behaviour produces a pleasant or desired outcome it is likely to happen again
  • This diagram displays the relationship between parenting stress, parent behaviour and child behaviour problems in the context of developmental disability. Parents and children reciprocally affect each other. Challenging behaviours in a child with a developmental disability can have a major impact on the parents. Parents will become stressed if they do not have the resources to cope with the child’s behavioural problems. Behaviour problems illicit negative emotional reactions (sadness, helplessness, fear) which accumulate over time to affect parental well-being (Hastings 2002). Parents under stress adopt certain parenting behaviours that tend to reinforce the child’s behaviour problem. (e.g. coercive parenting and giving in to the demands of the child). This type of parenting behaviour will reinforce the child challenging behaviour. And the process continues. Parental coping plays an important role in the management of challenging behaviour. In the previous section you learned strategies to facilitate parental coping. Parental strategies for coping and other variables can act as a buffer to the increased stress associated with having a child with behavioural difficulties. Challenging behaviour will also impact on adherence to a HAP, parents are less likely to comply with the HAP if they cannot cope with and manage their child’s behaviour. The same can be interpreted for how challenging behaviour in a child with a developmental disability will affect a physiotherapist during treatment. The behaviour is likely to cause stress for the therapist as it would interfere with the physiotherapeutic intervention. The physiotherapist may then try to stop the challenging behaviour, however without knowing the correct strategies to deal with it; the behaviour could instead be re-enforced and continue to occur. Justification Also link in the influence the of parenting stress with coping & adherence Children’s behaviour lead to stress in parents and parents under stress adopt certain parenting behaviours that tend to reinforce the child’s behaviour problems
  • If we examine the prevalence of challenging behaviour in developmental disability, it highlights the need for understanding challenging behavior as physiotherapists. We treat patients with all levels of disability and as you can see from the figures challenging behaviour is an issue that we will definitely encounter. The same can be said for parents, when we treat children who display challenging behaviours we will also encounter parents that will be trying to cope and address the behaviors themselves. Justification as to why were actually talking about CB. Highlight that it can affect both the therapist and family and link to coping and family involvement- did this in last slide.
  • Links in Handbook to websites with videos of CB pg. ? There are four main types of challenging behaviour, self-injurious behaviour, aggressive behaviour, stereotyped behaviour and non-person directed behaviour. If you turn to page .. In your hand book examples of each type are given.
  • Different types of developmental disabilities display some types of challenging behaviour more often than others. Self-injurous behaviour is most commonly seen in severe disability in autism and in disabilities involving communication deficits. Aggressive behaviour is more commonly seen in males than females also in autism and disabilities with communication deficits Stereotyped behaviour is most commonly seen in severe/profound disability Non-person directed behavior is most commonly seen in autism.
  • Aggressive behaviour
  • Communication: Person’s with limited communication use different forms of challenging behaviour to attempt to communicate their needs to others. For example If they want/don’t want to do something. During a therapy session the child may use a particular behaviour to attempt to communicate the fact that they don’t want to walk or they want to play a new game. Communication plays a part in each of the other functions of challenging behaviour! Social attention: We have all heard the saying, “It’s just attention seeking behaviour”. It is not bad to want attention from others. Unfortunately, for a variety of reasons e.g., limited communication skills, boredom, poor self-occupation skills, some people may learn that behaving in a particular way is a reliable way of attracting others’ attention, even if it is negative. For example, a child may find adult one-to-one interaction very rewarding, but at school has to share their teacher or assistant’s time with the rest of the class. This child may learn that wetting their clothes is associated with an adult providing them with one-to-one attention in the form of helping them to clean up and change into dry clothes. Another example is if a child head-banged, and the parent/carer picked them up every time they did, this would be giving them the required attention but would also be reinforcing to the child that if they want attention they should head-bang. Tangibles (to obtain): Here it is the desire for certain things e.g., food, drink, objects or activities, which is providing the motivation for the behaviour. Again, it is not bad to want these things. If you are thirsty, it makes sense to try and get something to drink. If you want a bath, it makes sense to try and get someone to bathe you. However, problems arise when an individual learns to act inappropriately to get these things. Escape: Whilst some people crave attention, for some people being left alone is the ideal situation. Rather then behave in a particular way to get people’s attention, these people will behave in a particular way to avoid situations or activities that they do not like, or do not find particularly rewarding. For example, a child that does not like group activities may learn that hitting the child nearest to them results in them being moved to a quiet corner on their own or if a child does not want to do their HAP with their parent or physiotherapist they may begin hair-pulling or screaming. This display of challenging behaviour may result in exclusion from the activity & the desired reaction, Sensory: Sometimes behaviour is internally rewarding, or self-reinforcing i.e. what is happening around the individual (externally) is not so important as what is happening inside the individual. For example, a person may behave in a particular way simply because of the sensation (e.g., rocking back and forth or banging their head), because it is stimulating (e.g., flapping a hand in front of a light or ‘twiddling’ a piece of string), or because of the way it sounds (e.g., grinding teeth together or clicking their tongue repetitively). These behaviours may appear pointless, annoying or distressing to the observer. However, for the person themselves, the behaviour may serve the function of helping them cope with uncomfortable negative feelings such as boredom or anxiety. Although a challenging behaviour may appear negative to us, the behaviour may serve as a positive coping strategy for the individual who has adopted it.
  • If we examine the functions of challenging behaviour more closely it can be broken down into two main functions. Communicate to obtain something or communication to avoid/escape. (the challenging behaviour is used to communicate what the child wants) To obtain can be non-socially motivated or socially motivated. Non-socially motivated: rocking/hand-flapping to obtain endorphin release non-socially motivated is internal. Socially motivated: to obtain attention or to obtain an object or activity. To avoid/escape can also be non-socially and socially motivated. Non-socially motivated is to avoid/escape pain or discomfort. If the child had an earache they may continuously poke their ear. Socially motivated: avoid/escape attention or to avoid/escape activities or objects. This one may be the most common one seen during physiotherapy intervention. The child may not want to do the activities or exercises that you have planned and use challenging behaviour to communicate this.
  • As physiotherapists we will be involved in the management of challenging behaviour because it will have a direct effect on our physiotherapy intervention and the family involvement in physiotherapy intervention. However the assessment of challenging behaviour is carried out by the psychologist and the main management is carried out by the doctor (pharmacological) and the psychologist (cognitive behaviour therapy). In order to address/ overcome challenging behaviour, it is essential to determine the purpose of the challenging behaviour. Successful treatment of CB should aim to change the relationship between behaviour and its antecedents or consequences. Need to known causes and purpose – consult with Psychologist Look for: Environmental cues Task/activity cues We will mostly be involved in using pro-active and reactive strategies to address challenging behaviou Pro-active strategies relate to manipulation of the environment and antecedent events, building skills and using reinforcement based approaches Reactive behaviour management plans relate to diffusion strategies, self-protective procedures and minimal restraint The use of physical restraint is considered to be a last resort to safe-guard against serious injury to the person with CB or others in the vicinity The strategies that we will look at are pro-active as there is very little evidence to support reactive. Consider the ethical and legal implications of physical restraint Therapeutic use of restraint: Continuous restraint: suppresses CB while restraint is in place, allows staff or carers respite Contingent restraint: Can result in a reduction of CB if used in association with other positive behaviour approaches e.g. DRO???? Is it worth mentioning???
  • If challenging behaviour arises for the first time in a physiotherapy treatment session and you are totally unprepared for it these are the steps that you need to take. Stand back form the situation Consult with the childs parent and the psychologist. Do not continue with the treatment. Instead form a plan for the next session so you are totally prepared in case of recurrence. Comment: Might also have another point that you should consult the psychologist (MDT approach) Really need to highlight that if the CB happens for the first time then this is what you should do…. Stand back Ax the situation, consult with mother and psychologist etc.
  • Link in environment aspect of ICF – influence on activity and participation Analysis and interpretation for strategies – CP & Autism Antecedent manipulations involve modification of environmental cues prior to the challenging behaviour, this involves the actual environment and the child ’ s wellbeing. The environmental factor of the ICF is the main focus here. Modifying the environment will lead to changes in activity and participation. Antecedent strategies hold many advantages over reactive approaches – prevent behaviour occurring, quick acting, correct environment contributing to problem and enhance instructional environment (decrease CB and increase desired behaviour) First, they can prevent problematic behaviour from occurring. By removing or modifying the environmental events that precede problem behaviour , the likelihood of the problem behaviour is reduced or eliminated. This is important not only for creating a safe environment but also for fashioning an atmosphere in which learning can occur. A second advantage of antecedent strategies is that they tend to be quick acting (Kern, Bambara,& Fogt, 2002). Removing or altering the events that occasion problem behaviour usually results in an immediate reduction of problem behaviour. Though the evident benefit is in cases of dangerous or destructive behaviour, the rapid elimination of any type of behaviour problem is desirable from a physiotherapy session management perspective. Another strength of antecedent interventions is the ability to correct an environment that is contributing to problem behaviour. Frequently, problem behaviours result from a mismatch between the environment and an individual’s skills, strengths, or preferences . For instance, work assignments that are too difficult for a student are a common cause of problem behaviour in the classroom (e.g., Kern et al., 2006). Appropriately matching instruction to a student’s skill and performance corrects this environmental problem. A final advantage of antecedent interventions is that they can enhance the instructional environment. Antecedent events associated with problem behaviour are decreased or eliminated while those associated with desirable behaviour are increased. Such carefully crafted environmental changes can create an environment where children want to be and are motivated to learn. Many different antecedent strategies. I will go into detail in the most relevant to physiotherapists. Predictable scheduling – Make a schedule for the child so they know when a certain activity will be stopped and what activity will be next. use picture cards: as transitions are the times when CB most frequently occurs. Have a board with pictures of all the different tasks they will be doing today in physiotherapy Photographic activity schedule- all activities for the day have a pic-know what is coming next Also works at home, have their daily schedule up on a board, and change the ictures according to what activities they do on certain days. Playing the same music : while doing the activity prepares the child for a change in tasks when the music is coming to an end. For example, have a song playing for one activity or exercise when the song ends the exercise ends Very useful for children with autism who do not cope well with change Rule-making: rule making should involve child, if possible so that rewards for positive behaviour are relevant to the child and thus they will want to comply have rules placed up on a wall so they are visible important to be consistent in rule application and instruction giving no more than 5 rules rules should be brief, simple & positively stated, displayed prominently in the environment and rules should be taught and demonstrated Choice: NB evidence ↓ frequency and intensity of CB in a group with a choice condition compared to no choice condition group ↑ engagement in activities, fewer disruptions and ↓ CB If there is more than one way of completing a task at home or in the physiotherapy session give the child the choice-if they have chosen it themselves hey are more likely to complete it. Very useful for autism Task Planning: v. relevant to physiotherapy sessions and also when teaching parents about HAP. Plan the orer of tasks carefully High probability requests: means you ask the child to do 4 things, the first 3 the child will want to do and will do, the last request the child will not want to complete but because a pattern of performing requests has been established there is a higher probability of the child completing this non-favoured task also - Use of preferred item -e.g. giving the child a toy to play with during activity or playing the childs favourite song during the activity Stimuli: Use of different stimuli: Introduce stimuli that reduce the rates of problem behaviour e.g. presence / absence of parent / brothers/ sisters Modify stimuli that bring about high rates of CB e.g. visit to doctors surgery-allow child to familiarise themselves with the surroundings on day 1, play with the instruments on day 2, treatment on day 3 Link in environment aspect of ICF – influence on activity and participation Analysis and interpretation for strategies – CP & Autism
  • Reinforcement: reinforce good behaviours/other behaviours to decrease amount of challenging behaviours DRO: differential reinforcement of other behaviour DRI: differential reinforcement of incompatible behaviour DRO: reinforcing positive/good behaviour Select an appropriate reinforcer e.g.praise, select an appropriate interval after which to give the reinforcer for example when doing HAP at home. Reinforcer is given to child contingent on the absence of CB during this interval period. positive reinforcement, if reward is not relevant to something the child wants then unlikely to produce that behaviour . Gradually the interval time is increased DRI: Choose an alternate behaviour that cannot be carried out at the same time as the CB e.g. drawing a picture instead of slapping oneself . Reinforcement given at regular intervals contingent on no CB during interval. Reinforcement gradually phased out. Skills acquisition : Child taught more socially acceptable methods of achieving same function as CB E.G. For example if challenging behaviour is usually displayed when the child wants an object or toy across the room they learn to ask for or pointing to an object. Skills acquisition may include functional communication training. CB is often a method of communication. Teaching the child new efficient ways of communicating can reduce CB. Physiotherapist would not be involved in teaching this however they would work closely with the MDT so they can use what has been learned by the child in the therapy sessions and HAP. FCT - (process of using info about what social consequences maintain the student ’ s CB, so equivalent and appropriate response can be taught) Picture exchange system is: Psychologist intervention - again if the psychologist was using this rx you could liaise with them and use it during therapy sessions. The basis of the whole thing is that when a child reaches for something they want, a picture is introduced in between the child and their reached-for desired object or activity. When the child then gives the adult the picture, the adult immediately gives them the thing (or activity) they want. This exchange can take place very quickly, when children are not physically disabled. The process works up from very simple requests to use of complex sentences (in pictures and/or words) but is always based on the exchange principle. The exchange process is a lot easier to describe than to do correctly
  • Handbook pg.? for practical strategies Changing instructional context: Embedded instruction - scheduling activities for times when CB was less (between episodes of CB) - identifying times and activities when instructional procedures designed for teaching a child's priority learning targets are implemented in the context of ongoing [naturally-occurring] activities and routines. Therapy ball as seat for children who find it hard to sit still- instructing them while moving- good for autistic children Rhythmic entrainment – use of music to decrease problem behaviours particularly stereotypy. Music can be used as a type of stimulus instead of the physical stimulus that stereotyped behaviour is used for. Play music when music ends task ends. Use picture cards to show what the next activity or destination will be Following set activity schedule – picture exchange system – helps with transitions, if something in the schedule changes then a new card can be put in to represent that change and prepare the child for that change (mentioned this earlier in antecedent manipulation) Recording their own behaviours can be achieved using pencil and paper – must be taught – for children with higher cognitive capacity – give rewards to reinforce the behaviour
  • PURPOSE: to avoid or escape. These usually occur during prolonged repetitive activities, such as reaching activities & core stability exercises, gym balls. This indicates that cb could occur due to fatigue. Ask the class what the cause of the cb is! Fatigue or escape?!??!?! Vary the order of activities: intersperse tasks with easy & difficult Anna ’ s interests include: dolls, painting, dancing & music. Appointments scheduled earlier in the day: modification of environment. Could the mother attend if working? Flexibility of service??
  • Barry, age 5, demonstrates either head-banging or repetitive hand-flapping at home when transitioning from 1 activity to another. (drawing to exercises) In rx. Changing activity: balance board to single-leg stance. PURPOSE: communication, to obtain attention. Reinforcement DRI and DRO.
  • For the final part of the presentation, I am going to focus in on family involvement- This section of the presentation will deal with the benefits of family involvement and then will again follow the format of identifying the barriers and facilitators to family involvement. By the end of this section you will have the skills to recognise the barriers to participation that different families experience. You will also have the necessary skills to be able to help the family to overcome these barriers and successfully participate in therapy
  • The benefits of involving the family relate to the immediate issues regarding improving the care for the chil;d to the broader issues pertaining to service provision in the 21 st century. Fisrtly, family involvement in therapy is essential today considering the service available to parents of children with developmental disabilities. Ideally families would have ease of access to a wide range of services including physiotherapy. However, as you are all aware at the present time, given the difficulties in the health service, resources are at a minimum and unfortunately children may only be allocated a small amount of direct hands on therapy time. Family involvement and the transformation of he parent from the role of a passive bystander to an active co-participant in their childs therapy is destined to continue and become an even more widespread concept considering the Disability Act of 2005 which stated that every child between the age of 0 and 5 is entitled to an assessment of need. Given the current shortage of physiotherapists the probability is that while children will receive these assessments of need (and more children will be highlighted as having some degree of developmental disability), there simply will not be enough therapists available to provide continuous treatment to all these children. Thus the burden will fall on us the future physios to educate the parents and train them to become co-therapists capable of continuing therapy in the absence of direct supervision. In the absence of direct hands on therapy time, it is even more vital that the parents are educated in and become active participants in the treatment of their child. Furthermore, given that children have much greater amount of contact time with their parents, it is logical that parents have more time available to practice new motor skills with their child. As this pie-chart from the Mahoney & Perales study shows parents spend a much greater amount of time in 1 to 1 contact with the child, if the child receives 35, 50 minute intervention sessions compared to parents giving an hour daily with the child. Ketelaar et al in their review found that parents are the people best able to provide continuity of care for the child. It is well acknowledged in the literature that practice of motor-skills is essential for proper development. Jansen et al 2003 found that motor progress in children with developmental disability was correlated with the hours of parental participation and their involvement after 6 months of NDT therapy. Furthermore, family involvement allows for the practice of motor skills in natural environment which is important as children with disabilities have difficulty in transferring skills learned in one context to another as mentioned previously. Thus it is logical that by involving the parents the child will receive greater practice time of necessary skills and subsequently improved development. Also it is a more c ost-effective way of expanding Rx for the child ( from other slide ), and considering the current health care climate, this a very realistic issue.
  • Secondly let us consider family involvement from the ICF model perspective. As previously mentioned, the family is the immediate environment within which the child develops. Thus it makes logical sense that in order to optimise the child's development, it would be appropriate to optimise the environment around them and practice their motor skills in that environment Furthermore, given that the ICF model promotes the movement away from impairment based therapy to more functional therapy which is related to and directly effects the childs activities and participation, involving the parents is vital. Involving the parents allows for children to practice new skills and activities in a realistic environment (i.e the home) . Ketelaar et al highlighted the difficulties that children with developmental disabilities have in transferring skills learned in one context into another. To explain that, although it may be our best intention to teach the child to walk in the clinical setting, thus this intervention may still be insufficient. Consider the usual clinical environment, generally gait training would take place in a gym in the physiotherapy department. This involves teaching the child the skill of walking in a large open space with no obstacles or barriers. Now consider walking as a functional skill whereby the child has to navigate in school and at home in smaller confined spaces, generally full of clutter and whereby the child constantly encounters obstacles be they objects or other individuals walking or running around. Although there is certainly merit to the direct training that a child receives in a clinical setting, additional home-based intervention programs that involve parents and allow for the practice of functional skills in the child’s typical environment are likely to be more beneficial for development than practice only in a clinical setting. Involving parents in intervention programs has been shown to speed the achievement of goals and increase the likelihood of obtaining improved motor functioning in physically disabled children. If you appreciate nothing else from today please let it be that therapy programs for children with developmental disabilities should be based around functional activities. Always consider how does this intervention relate to the childs functional ability and particiption level. If you cannot find the answer to this question, it may be time to reevaluate your treatment……
  • Ok so we have discussed two of the most important factors relating to the benefits of family involvement- So now we will just mention some of the many other benefits of involving the family. The benefits of family involvement if carried out correctly relate both to the child and the parents and thus to the whole family in general. The primary benefit to the child and parent from parent involvement is enhanced parent-child socio-emotional relationship according to McConachie. As a result of the improvement in this relationship there are consequent benefits such as improved behaviour, coping, communication, family functioning, increased adherence to the intervention programme and decreased stress. In fact these benefits may accrue independently of the improved parent-child relationship and contribute to the improvement in the relationship. Therefore there is a bi-directional relationship between the main benefit (in the centre) and those around it. So then briefly looking at how these benefits are actually attained. Family participation in therapy results in : the acquisition of new skills, confidence and understanding If we look at where we as physios could become involved, throughout this presentation we have looked at practical ways of improving family coping. As previously discussed poor parental coping is directly related to increased levels of parental stress and poor family functioning. Thus you can see how both family coping and involvement can interlink to result in overall decreased stress and improved family functioning. Also family involvement has been shown to improve child behaviour and communication. Again, this may not be possible if the barrier of the childs challenging behaviour is not first addressed. Thus again you can see how involving the family is not merely as simple as saying “I’m going to involve the family in a HAP”, there are many practical issues which need to be addressed and which we hope at the end of this short course you will feel you would be able to address in an appropriate manner. References for each point: Enhanced parent-child socio-emotional relationship - ? REF Improved coping (through decreased stress) - Improved behaviour - McConachie Improved communication (includes with parents, peers and other adults) - McConachie Improved family functioning – Ketelaar (family benefits as a whole from new skills of parents, and increased competence/confidence of parents) Increased adherence to intervention programme - Decreased stress – McConachie (depression decreased also)
  • One of the main benefits that parents gain from being involved in their child’s intervention is the acquisition of new skills for parenting a child with disability such as: Handling of the child Communication with the child Helping the child with their ADLs Problem-solving skills for everyday difficulties that occur ? Any more As a result the acquisition of these new skills contributes to parents increased confidence & competence (Ketelaar et al) as care-givers and parents. Essentially facing new unfamiliar problems is less intimidating due to this range of skills. Again the resulting improvement in parental skills links directly to the child's immediate environment. Environmental factors in the ICF model relate to the physical, social and attitudinal environment in which people live and conduct their lives. Involving the family can result in an improved physical environement at home as parents learn the most appropriate methods of stimulating their child within the home environment. However, family involvement also plays an important role in improving the attitudinal environment in which the child lives by modifying parental attitudes to developmental disability. The development of these new skills is assisted by improved understanding of the child’s development and capacities. This is beneficial as parents develop appropriate expectations of the child’s future, which can guide them in planning, for example; deciding on schools and family activities such as holidays. Furthermore, this understanding of expected development allows parents to monitor any unexpected changes and act accordingly. The improved understanding also promotes realistic goal-setting which is very important in terms of parental involvement and we will discuss this further later.
  • Despite the vast amount of evidence pertaining to the beneficial effects of parental involvement in therapy as highlighted above, there is a real lack of evidence examining the results of parent implemented versus therapists implemented interventions. There are several reasons for the scarcity of evidence in this area: The Education of the Handicapped Act Amendments (1986) passed in the United States of America established the family unit as the focus of services rather than just the child. Furthermore, In Ireland, the Constitution recognises the family as the fundamental unit of society. This set a precedence for future policies in service provision for the developmentally disabled child. Mahoney & O’Sullivan (1990) state that the child’s needs can best be met by enhancing the family's effectiveness at caring for and managing these children. This law stipulated several provisions such as identification of family concerns, priorities, and resources to achieve an individualized family service. Thus it would be unethical to carry-out RCTs, as this would violate the rights of the family to be involved in the treatment. Furthermore, considering the well supported importance of early intervention, not providing optimal Rx for a developing child to potentially advance research would also contravene ethical standards. Finally, as part of the ethos of the Physiotherapy and therapy professions in general, activities carried out in the session are encouraged to be practice at home. Therefore this type of research would contradict the principles of the profession. As a result the quality of evidence for parent involvement in intervention programmes for DD children is poor. This is demonstrated in a S.R. of parent implemented intervention programmes in autism. Link to handbook. The review had excellent methodological quality with a comprehensive search of the literature, stringent inclusion criteria that made the included studies generalizable without bias and a thorough statistical analysis. The 12 RCTs included would not have been in breach of ethical standards as the majority were comparison treatments where the parent wasn’t involved. The authors found from their statistical analysis of the studies that parental involvement in autism intervention had a number of benefits for child, parent and interaction outcomes, which we will discuss further in the following slides. However, due to the poor methodological quality of the studies, the generalizability of the results is limited. Thus it is unclear the extent of the benefits of involving parents, according to the research. Nonetheless, based on the logical understanding that the of learning new skills in a familiar environment through practice is optimal, it is clear that parental involvement is beneficial.
  • Looking at the evidence around the barriers to parental participation, we extracted evidence from all the therapy professions. This was considered appropriate given the commonalities arising from the literature. We then categorised the barriers as internal or external barriers to participation. Internal factors refer to limiting factors within the family environment: These are environmental or personal factors in the ICF model. Although previously you may have held the view that such factors are not important or do not deserve as much consideration as the child's health condition or body impairments, I hope by this stage ye are beginning to recognise that the ICF model portrays the interlinking between the environmental and personal factors and the child's activities and participation. Without optimising all domains, the child will have a lesser chance to progress. The main internal barriers that arose in the literature were: So it is important that we not only recognise these barriers but also consider as physiotherapists where we can link in and had an effect. For example: Limited availability of a parent Consider any other carer for the child Need to provide training for the carer who will be carrying out the HEP High levels of maternal and paternal stress and poor psychological adjustment Refer to strategies suggested to facilitate family coping Lower education level: Although this may seem like an area where we cannot have an impact, we can tailor our treatment appropriately according to the parents education level. This may involve rethinking the way we provide information to the parents or the quantity of information we provide. Fewer financial resources: Again this may appear to be the social work domain, but it is important to remember that we will not always have access to a social worker. Thus simple things such as providing equipment to parents or devising a HAP that will not require them to purchase expensive equipment can make a big difference to parents who may be struggling financially to cope. Furthermore, by equipping oneself with the basic information about disability grants and where to direct parents to find more information, it is possible to have an effect on these barriers also and to provide a comprehensive service to parents.
  • Secondly, from the literature the main external factors influencing family involvement were determined. The main factors identified in this case were: Geographical constraints (living in a rural location, access to transport) Again as a physiotherapist it is important to think realistically. It is important to examine the literature in the context of the current service provision. With regard to geographical constraints, it is not realistic to move the family closer to the centre but with some creative and lateral thinking, there are many options available to us a physiotherapists to facilitate family involvement by overcoming the geographical barriers. For example it may be appropriate to: Home visits Information re: possible financial benefits & transport benefits Central location for all services Communication between MDT to arrange appointments on the same day Accessing resources & services Accessing funding can pose problems as diagnosis can be delayed. Satisfaction with service: organisation, relationship with therapist, ease of access, policies & practices. Issues with low social support were covered in the family coping section thorough education (to accept help), parent-parent support groups and ...... Again although it may be difficult to consider how these factors can impact on the child’s development and progression in therapy, geographical constraints can relate to environmental barriers-if the child is unable to access therapy, it is highly unlikely that the child/parents will be able to optimise their child’s development alone without assistance and supervision. Furthermore, service factors such as the parents continuity of care, accessing services and satisfaction with services all relate to and impact upon the personal factors in the ICF model. As we will describe later, in order for the development of a successful parent-therapist relationship, it is necessary to have an open trusting and cooperative relationship.
  • So just briefly to look at some qualitative data relating to parental views of HAP’s. Thus far we have focused a lot on the benefits of parental involvement. However, unfortunately HAP’s are not designed appropriately and thus this leads to negative parental attitudes towards HAP’s and possibly detrimental effects on the family. So.......
  • Noncompliance has been identified as a factor affecting treatment outcomes.7–9 Compliance has been shown to be lower when the child’s disability is chronic. The factors studied have included age, race, religion, marital status, socioeconomic status, and family size. However, none of the studies have found conclusive reasons for compliance or lack of compliance. Altered family relationships, modifications in family activities, the burden of increased care, need for compliance with time-consuming treatment regimens, financial strains, special housing, equipment needs, possible social isolation, grieving reactions, and worrying about the child’s prognosis and future potential can contribute to the stress experienced by families with disabled children Research has shown that families with disabled children experience greater stress levels and that parental compliance with home therapy regimens was a problem.1,11,15–17,23 Physical therapists are responsible for ensuring that caregivers are as effective and efficient as possible in delivering home therapy interventions to their disabled children to maximize outcomes. Parents with good coping strategies and the ability to effectively manage stress demonstrate: Better personal well-being Increased involvement in therapy More positive interactions in parent-child play More positive attitudes about their child Result: Higher scores on developmental tests REMEMBER: The family is the immediate ENVIRONMENT where the child develops Rone-Adams carried out a study looking at : Sixty-six caregivers of children with disabilities (muscular dystrophy) responded to a mailed survey to determine their level of compliance with a prescribed home physical therapy program and the level of caregiver stress. Correlation coefficients showed a significant relationship between family problems and noncompliance with home programs. As caregiver and family problems increased, noncompliance with home programs increased. Without adequate compliance the beneficial effects of a HAP are lost, as previously mentioned compliance to HAP in general and the different aspects of them is very variable. So lets look at this from the physio perspective: We know that parental involvement can benefit both the child and the parents We also know that because of the restrictions on the hands-on therapy time we can spend with the child we need to involve the parents However, we also know that involving the parents can actually cause stress in the family. Stress as we discussed in a previous section negatively effects family coping with a disability and hence the families ability to adapt to their child’s needs. Physical therapists working with families with a handicapped child can help to prevent unnecessary stressful situations during and throughout physical therapy services.” There are specific times in developmental when there is increased stress on the family. Stress increases when there is a loss of a major functional skill such as walking, when modifications are needed to accommodate adaptive equipment for mobility, during transition to the educational environment, and during the terminal stages of the disease. These are times that physical therapists should pay special attention and make great efforts to aid families in managing stress levels. ?? Environment again here??
  • Another factor which will effect the parents ability to become an active participant in therapy of a HAP with their child is related to the different stages of coping parents go through. Lets look at the model proposed by Piggott et al, Piggott et al suggest that parents initially go throuhg a coming to grips stage. The “coming to grips” stage comes directly after receiving a diagnosis In this stage parents focus is on coming to grips with the diagnosis. Parents are often unready to cope with the health service and health care professionals and hence this precludes their full participation in therapy. In this stage therapists need to be aware that parents and child may need more hands-on supervised therapy time with a less demanding HAP. The 3 highlighted areas contribute to the parents being able to make a breakthrough. It is neccessary for therapists to focus on these key areas in order to facilitate family involvement later on. The highlighted areas have been covered previously during this presentation but again highlight the importance of parent education and the development of a good trusting therapist-parent working relationship Once parents reach a breakthrough they quickly enter the 2 nd phase-striving to maximise. At this point parents have a more positive outlook and the motivation needed to be an effective participant in therapy. Hence from this model it is clear that physios need to take the above factors into account when prescribing a HAP. With the best will in the world a therapist may prescribe HAP during the 1 st or 2 nd treatment session without giving due thought to the families capabilities for carrying out this program. Such negligence may effectively lead to the situation whereby a distressed parent is faced with a complicated HAP which acts as a further stressor thus worsening as opposed to ameliorating the situation. Careful consideration to the families capabilities should be given prior to the pescripion of a HAP.
  • Having looked at and identifying the potential barriers to parental involvement in physiotherapy it is now important to consider the possible strategies we as physiotherapists could use to facilitate and promote family involvement. These strategies can be divided into 2 categories-service strategies and therapist strategies So you may be thinking that at this stage it is pointless to be learning about service strategies because as a basic grade physio you may have little say in the organisation of the service. However as we will run throuhg in a minute, service strategies need not be limited to widespread and daunting changes to the whole service but may involve subtly adapting the service so that it fulfills both the child and parents needs more effectively. These subtle changes can be implemented by individual therapists. Furthermore, by being aware of this information, you will be able to advocate to more senior physiotherapists (with the support of an evidence base) should you find yourself working in a poorly organised service. Secondly the therapists strategies which may seem more relevent to you at present......these are practical ways or strategiess for involing parents in therapy or improving the quality of parental involvement.
  • Flipchart – 2 people can write OK so everybody stand up when you call out a strategy you can sit down again! Ok now i’d like you to take 30 seconds to think about a few strategies that you might already know to improve parental involvement in both therapy and HAP programs. Now shout them up to me and we will write them down and consider them......
  • The service strategies we have chosen were chosen for their relevance to us as physiotherapists. We felt that these were areas whereby the PT could have an influence. These strategies may take a little preplanning etc but ultimately will result in the provision of a more family friendly physiotherapy service Centralising services: Access to a contact person/ key worker Regular contact between therapist and family Open communication between all members of the MDT Continuity & consistency of service providers in order to facilitate the building of a trusting recipriciol relationship between therapist-physio Flexibility with regard to scheduling appointments. Consider the family’s situation, any potential barriers that may effetc their ability to make appointments. By being flexible with appointments, there is some evidence to support fewer DNA’s and hence a reduction in the wasting of health service time and resources Positive staff attitudes about family involvement Caregivers recognised as equal participants in the process Inclusion of the family in all meetings about the child All the above indicate that a family centred service is best. (King et al 2004) Family centred service is a model of service provision. As a basic grade physio it is unlikely that you will be in the position to change the current model of practice. So the aforementioned strategies are adopted from the principles of family centred service and relevant to you as a basic grade physio Families are all unique Each family may wish to have a different level of involvement in decision-making Encourage involvement of all family members FCS ↓ anxiety and depression and improves well-being in mothers
  • Link activity participation here of ICF – ADLs (education & individualisation – discuss more in following slides) – environment & personal factors can link in here also OK so ye mentioned quite a few strategies that's very good. So from evaluating the evidence, we listed the strategies under a few different headings...... Involving parents in: Goal-setting. Provide regular opportunities to evaluate & reformulate goals Decision-making and planning Education Consider the way info is provided and Achieving balance of giving correct amount of info Education should not merely be the therapist reaming off information to the parents. It is far more beneficiail if the therapist an develop reciprocal communication between family & therapist and thus information can be given in an informal manner Parents require both basic information about their child’s disability (Clinical information)( and also practical information about their involvement and the HAP and the possible benefits of the HEP Motivation might seem like a slightly strange strategy to be using but it links in with parental understanding of the importance of teh HAP and parental compliance. In order to increase parental compliance you as the therapist must convince them of its benefits and motivate them to carry out the HAP regularly Program must be individualised to suit the families: Capabilities Situation Daily schedule We will talk a little more about this later on Finally as we discussed right back at the start of our presentation, in order to involve parents you must firstly overcome the barriers- thus far we have covered in detail two of the main barriers to effective family involvement these being poor family coping and the child’s challenging behaviour. So although theses might have been discussed previously all the strategies in these sections are also very important strategies to facilitate parental involvement.
  • OK now I’ going to look in a little more depth at some of the strategies that we have not already covered: Education should be individualised by assessing parental information needs: By observing facial expression Participation in information giving – questioning etc. Do the parents ask questions? Or are they just passively listening to the information but maybe not actually understanding it? Consider the parents Education level, and the way yu are presenting the information. Use non-medical terms when explaining things to the parents Ask them what do they want to know or find out what they don’t know Address s ignificant concern of parents is the development and future prospects of the child - Case 2000 Parents are often left in limbo as to the potential for their childs future development. Although it may be the case that you cannot accurately say how the child will develop it is better to be honest with the parents and tell them this than not say anything at all. Parents appreciate a physiotherapists honesty By providing an information and support system individualised to parental needs - By offering parents peer and professional support and information, it was hoped that the depression and stress levels of participants would be reduced and that family coping skills would be improved – more of a coping strategy Co-ordination & consistency of information – Case 2000 – the way the service delivered Then looking a little more in depth at the actual manner in which the information is presented: Verbal presentation of information is preferred by parents for ? General info: Avoid overwhelming the family with suggestion – encourage them to find solutions and activities they can perform in daily life (Shepherd 1995) - support the naturally occurring opportunities that exist at home or, for example, at school to learn and practice daily skills Case (2000) identified qualities of therapist that are important when communicating with parent. These are: Clear and accessible fashion Successful transmission of information Awareness of parents’ understandings and other factors affecting the communication process (Middleton, 1992). Unfamiliarity of medical vocabulary or ‘jargon’ (Boyle, 1970) can produce errors in understanding and dissatisfaction with communication (Ley, 1989) Research is increasingly inaccessible to the research subjects themselves Written & pictorial information preferred for therapy programs Consider level of reading/education Large font Parents should be trained to teach their child – empower parent - Expanded training approach – (Wehman 1998) Again avoid overloading with practical info/demonstration- teaching one skill at a time Teach parents Problem-solving skills and being creative in their treatments, Ryan et al 1996 By using an expanded training approach whereby parents trained to teach their child - this training also positively affects the knowledge and attitudes of the parents - increased sense of confidence in their ability to parent
  • Families are all unique Each family may wish to have a different level of involvement in decision-making & participation Individualization of intervention, based on child & family’s needs & priorities Program must focus on child and family’s needs & priorities: Emphasize functional Rx focusing on problematic ADL’s What does child and parents want to achieve? Practical approach/strategy suggested by Levitt (1995) suggested that the therapist talk about a typical day with the child and family and be encouraged to tell which activities they would like to improve further and which activities are most stressful or time-consuming Incorporate program into family’s daily schedule - situation and daily schedule - prevents overload and ensures the program decreases rather than increases stress It is important to incorporate home programs into the regular daily routines and activities followed by the family, such as bath time, playtime, and dressing. Incorporating the home program into the daily routine might lead to better compliance and less stress for the caregiver and other family members. Additionally, emphasizing simplicity and minimizing the number of activities may also reduce stress and lead to better compliance. Parent’s as equal participants in decision making & goal-setting By having the parents as equal participants this again develops a recipricol relationship where the importance of the prentsal contribution is recognised. Parents should be involved in goal setting as they will have a better idea of what functional limitations the child has and what os of the most importance at that time. Adapt - adapted to the family's capabilities – This involves an assessment of family resources and family coping to see if the family is capable of carrying out a HAP effectively at this time and how much support the family needs to do so.
  • Treatments & discussions should offer parents hope Treatments & discussions should offer parents hope – show parents that you are considering what they are saying & incorporating it into the plans (there knowledge should be taken into account ) - Therapist acceptance of their goals. Both the therapist and parent can work together to suggest suitable goals but the parents views should never be dismissed byt the therapist Collaborative relationship between parent & therapist using empowering interactions Empowering interactions between parent and professional resulted in enhanced self-efficacy and personal control – think of practical ways of achieving this for Physios: Physios should be: Positive and productive Competency producing Participatory Accepting Collaborative relationship between parent & therapist – parents must believe that the therapist takes them seriously has a personal interest in the child’s welfare – professional or personal level? Establishing communication played a role in family participation (Ryan et al 1996) Info packs given re: importance of attendance and adherence for positive therapeutic outcome to increase motivation. These have been shown to increase parental motivation and compliance with therapy Make self-motivation sentences to parents – get example Provide supervision to parents & reassessment of goals – can highlight to them what they have helped the child achieve and progress made – will motivate them to continue by showing the parents the actual benefits of the program
  • Ref!!! Notes for other strategy slides: Encourage them to find solutions and activities they can perform in daily life Build on family strengths, seek to enhance family adaptation, and create within families new capabilities to support and facilitate infant and toddler development and prevent developmental problems (Wehman 1998) – more overall goal than a strategy Recommendations (Ryan et al 1996): Pro-active in education of family Be aware of family dynamics – assess and understand the goals of the family and pt. PTs become involved at organizational level to provide necessary opportunities for families Individualization of intervention based on assessment of family needs - emphasizes helping parents acquire the services and skills needed to facilitate the adaptation and the development of the family and the child with disabilities. - the family empowerment model (Dunst, Trivette, & Deal, 1988) emphasizes the importance of identification and alignment of social support to strengthen the family unit, and the family-focused intervention model (Bailey, et al., 1986), where intervention is seen as a means of optimizing the fit between the capabilities of the family and the demands that the family faces Skills can be grouped in 3 different categories A) skills in doing the intervention with the child B) skills in teaching the parents to do the IV C)Skills in managing the parent teaching process Therapists must be able to implement the intervention with the children, to instruct parent sin performing the intervention and to troubleshoot with parents in their use of it, in order to provide specific feedback coaching and guidance towards effective implementation
  • Comment: Case study here for same reason as in coping section. Anna’s mother is coping better from a psychological point of view & we want to increase her participation by initiating a Home Activity Programme (HAP). The practical difficulties for Anna’s mother in leading the HAP: Resources – space & equipment (therapy ball & wedges) Lack of understanding of condition & the child’s future Strategies for a 1 hour session to initiate a HAP: Educate – oral info & pictorial HAP (Ax her understanding & education needs – mode, degree of info etc.) Practical demonstration of HAP (one exercise at a time) – get parent to perform and give feedback (positive, praise listen to them & adapt accordingly – change handling etc.) Empowering mother – offer frequent praise, show her how she has improved within & between sessions in things like handling, confidence, problem-solving (ask her questions “what would you do in this situation?”) & reassure parents re: child’s & their progress/ability Exercise log book Individualising Collaborative goal-setting - Ax existing resources at home & suggest innovative alternatives e.g. hard floors in apartment, no therapy mat as a result the physio may suggest putting towels on the floor, Incorporation into daily activities such as stretching during nappy change, maintain correct posture and sitting position/balance during tv time Ideas: In initial coping a strategy may be to involve the parents in the sessions (but still therapist led – no burden of HEP) When coping improves can move towards parent-led Rx in the home setting – therefore increased level of involvement which is what we are aiming for
  • Following the initial Physiotherapy Ax a HAP was formulated with the mother. The practical difficulties for Barry’s family in implementing the HAP were: Time – due to other children Accessing service – geographical constraints Challenging behaviour Strategies: Individualisation: Incorporate into ADLs – involve siblings in HAP – make suggestions for activities that all the kids could play together ( decrease burden on mother for performing HAP), hopscotch, soccer, chase, He may have social interaction problems so it may raise the chances of him partaking if the therapy is led by siblings rather than a stranger ie. you. By doing this you are also meeting the capabilities of the family… Have a formal therapy routine to be carried out daily & implement these into ADLs Incorporate into ADLs Education & Motivation: Oral information backed up with written information Participation of both parents in information sessions Teaching parents skills; problem-solving & progression. The distance from the centre could be an issue so
  • ? Ref Website Looking at few conditions to thread thru pres, For family goal setting with parents and child a new tool that could be used in goal setting is the Children’s Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activities of Children (PAC) - (Pass it around).
  • Open to page x of the handbook & then discuss Very interactive model.. 1 thing influences another…. We, as physios, are generally proficient at identifying & treating impairments. However, the ICF model highlights the importance of considering the associated factors influencing the development. An environment with barriers, or without facilitators, will restrict the individuals performance’, we could link this idea with the need to facilitate coping, family and involvement and address challenging behaviour as these will be the facilitators in the child’s environment. Failure to involve the environmental factors in dd intervention, particularly physiotherapy aspect will significantly impact on the other domains eg… To a lesser degree we will focus on personal factors such as social background, upbringing, lifestyle. These link in with the family as the environmental aspect. Justification: Facilitating the family is an indirect intervention for the child as the family are the primary environment for the child’s development. Involving the family can help the child achieve greater functional gains than are seen with tradition impairment based therapies.
  • Eating & Drinking CP Bathing CP Football CP Basketball Autism Writing Autism Dressing Autism
  • You now have the necessary background knowledge on the important skills for facilitating the role of the family in the areas of coping, challenging behaviour and family involvement. Following the break you will have the opportunity to apply these skills using case studies….. Look under your chairs now and you will find part of your case study, get into groups etc. Changed perspective based on WHO Rv Learning objectives and skills /knowledge ++++ Our overall aim from a physio perspective was to involve the family……within this it is necessary to consider factors such as coping and CB as these are areas where physios can link in effectively
  • Developmental Disability Presentation Version.ppt

    1. 1. Facilitating the Family in Developmental Disability - A Physiotherapy Perspective Aoife Bourke, Lonán Hughes, Catriona O’Dwyer & Aideen Shinners
    2. 2. Learning Outcomes <ul><li>WHO International Classification of Function, Disability & Health (ICF) </li></ul><ul><ul><li>To apply the WHO ICF Model to Physiotherapy practice for developmental disability </li></ul></ul><ul><li>Detection & Diagnosis </li></ul><ul><ul><li>To increase knowledge of the screening methods for developmental disabilities </li></ul></ul><ul><li>Coping </li></ul><ul><ul><li>To recognise factors influencing a family’s coping ability </li></ul></ul><ul><ul><li>To identify & apply strategies to facilitate family coping </li></ul></ul><ul><li>Challenging Behaviour </li></ul><ul><ul><li>To recognise types of challenging behaviour </li></ul></ul><ul><ul><li>To identify & apply strategies to address challenging behaviour </li></ul></ul><ul><li>Family Involvement </li></ul><ul><ul><li>To recognise barriers to family involvement </li></ul></ul><ul><ul><li>To identify & apply strategies to facilitate family involvement </li></ul></ul>
    3. 3. Course Outline <ul><li>Hour 1: </li></ul><ul><ul><li>WHO - ICF </li></ul></ul><ul><ul><li>Detection & Diagnosis </li></ul></ul><ul><ul><li>Family Coping </li></ul></ul><ul><ul><li>5 min break </li></ul></ul><ul><li>Hour 2: </li></ul><ul><ul><li>Challenging Behaviour </li></ul></ul><ul><ul><li>Family involvement </li></ul></ul><ul><ul><li>10 min break </li></ul></ul><ul><li>Hour 3: </li></ul><ul><ul><li>Group work </li></ul></ul><ul><ul><li>Questions </li></ul></ul>
    4. 4. Website
    5. 5. International Classification of Function, Disability & Health
    6. 6. International Classification of Function, Disability & Health (ICF) <ul><li>Developed by WHO - 1992-2001. </li></ul><ul><li>ICF model: </li></ul><ul><ul><li>“ recognises disability as a universal human experience ……. shifting the focus from cause to impact ….. takes into account the social aspects of disability” </li></ul></ul><ul><li>Primary function is to code the components of health and their interactions </li></ul><ul><li>Purpose: </li></ul><ul><ul><ul><li>Negative Neutral terms </li></ul></ul></ul><ul><ul><ul><li>Expand thinking beyond primary impairments </li></ul></ul></ul><ul><ul><ul><li>Moves from medical to bio-psychosocial approach </li></ul></ul></ul>WHO 2001
    7. 7. WHO ICF Model HANDBOOK.htm#Handbookpg8 WHO 2001
    8. 8. Detection &
    9. 9. Overview <ul><li>Neonatal assessment </li></ul><ul><ul><li>Risk factors for developmental disability </li></ul></ul><ul><ul><li>Formal neonatal assessment </li></ul></ul><ul><li>Focus on Cerebral Palsy </li></ul><ul><li>(CP) & Autism </li></ul>
    10. 10. Purpose of Neonatal Assessment <ul><li>To identify infants at greater risk for developmental disability </li></ul><ul><li>To allow for periodic developmental screening & for early intervention to optimise outcome </li></ul>
    11. 11. Risk Factors <ul><li>Maternal: </li></ul><ul><li>Education level attained </li></ul><ul><li>Maternal age </li></ul><ul><li>Marital status </li></ul><ul><li>Prenatal care </li></ul><ul><li>Smoking during pregnancy </li></ul><ul><li>Alcohol intake during pregnancy </li></ul><ul><li>Maternal medical history </li></ul><ul><li>Complications of labour/delivery </li></ul><ul><li>Child: </li></ul><ul><li>Gestational age <37 weeks </li></ul><ul><li>Birth weight <2.5kg </li></ul><ul><li>5-min Apgar Score <7 </li></ul><ul><li>Multiple births </li></ul><ul><li>Presence of a newborn condition </li></ul><ul><li>Presence of a congenital abnormality </li></ul>Chapman et al 2008; Delgado et al 2007 HANDBOOK.htm#Handbookpg11
    12. 12. Neonatal Assessment <ul><li>Neurological Assessment </li></ul><ul><ul><li>Examines muscle tone regulation & postural reflexes </li></ul></ul><ul><ul><li>Amiel-Tison </li></ul></ul><ul><li>Neurobehavioral Assessment </li></ul><ul><ul><li>Examines spontaneous & elicited movement patterns, primitive reflexes & response to auditory & visual stimuli </li></ul></ul><ul><ul><li>Neonatal Behavioural Assessment Scale </li></ul></ul>Ohgi et al 2003 HANDBOOK.htm#Handbookpg22
    13. 13. Neonatal Assessment <ul><li>Medical Inventory </li></ul><ul><ul><li>Medically orientated inventory </li></ul></ul><ul><ul><li>Assesses risk factors for peri-natal brain injury </li></ul></ul><ul><ul><li>Perinatal Risk Inventory </li></ul></ul><ul><li>Neuro-imaging </li></ul><ul><ul><li>MRI superior to ultrasound due to higher sensitivity </li></ul></ul><ul><ul><li>Abnormal findings on MRI strongly predict adverse neuro-developmental outcomes at two years of age </li></ul></ul>Zaramella et al 2008; Mirmiran et al 2004; Scheiner & Sexton 1991
    14. 14. Neonatal Assessment <ul><li>Assessment of General Movements (GM) should be added to traditional neurologic assessment, neuro-imaging & other tests of preterm infants for diagnostic & prognostic purposes. </li></ul><ul><li>Definitely abnormal GMs at 2-4 months (i.e. total absence of fidgety movements) predict CP with an accuracy of 85-98% </li></ul>Adde et al 2007; Hadders-Algra 2001; Cioni et al 1997
    15. 15. Detection & Diagnosis of CP McMurray et al 2002 Clinical Clues Toe-walking & scissoring of the lower extremities Decreased rate of head circumference growth Seizures (?Epilepsy) Irritability Handedness before 2 years of age Persistent primitive reflexes & delay in achieving postural reactions Formal Assessment <ul><li>Complete history </li></ul><ul><li>Physical & neurological examination </li></ul><ul><li>Additional investigations </li></ul>Diagnostic Age <ul><li>Diagnosing mild CP in the early years of life is often unreliable </li></ul><ul><li>5.2/1000 children diagnosed with CP at 12 months, incidence at 7 years was 2/1000 </li></ul>Onward Referral <ul><li>Physiotherapist, Speech & Language Therapist, Occupational Therapist, Psychologist or counsellor, Ophthalmologist, Paediatric consultant, Gastroenterologist, Nutritionist ,Social Worker, Orthopaedic consultant </li></ul>
    16. 16. Detection & Diagnosis of Autism SIGN 2007 HANDBOOK.htm#Handbookpg12 Clinical Clues Delay or absence of verbal &/or non-verbal communication Not responsive to other peoples facial expression/feelings Lack of pretend play Does not point at an object to direct another person to look at it Unusual or repetitive hand or finger mannerisms Unusual reactions or lack of reaction to sensory stimulation Disorder of coordination & fine motor skills Formal Assessment <ul><li>History taking </li></ul><ul><li>Clinical observation/assessment </li></ul><ul><li>Contextual & functional information </li></ul><ul><li>Individual profiling: OT, Physio, SLT, Audiologist </li></ul>Diagnostic Age <ul><li>Age 2-3 years by experienced healthcare professional </li></ul><ul><li><2 years typical autistic behaviour may not be evident </li></ul>Onward Referral <ul><li>Paediatric consultant, Occupational therapist, Speech & language therapist, Special needs assistant, Audiologist, Behavioural psychologist & Physiotherapist </li></ul>
    17. 17. Case Study-Anna <ul><li>Anna presented to the Physiotherapy Department at 9 months with a diagnosis of spastic diplegia (CP) </li></ul><ul><li>Child Risk Factors </li></ul><ul><ul><li>Premature birth: week 32/40 </li></ul></ul><ul><ul><li>Birth weight (2,300g) </li></ul></ul><ul><li>Maternal Factors </li></ul><ul><ul><li>Left school at 16; now aged 19 </li></ul></ul><ul><ul><li>Continued socialising throughout pregnancy </li></ul></ul><ul><li>Neonatal Ax </li></ul><ul><ul><li>Absence of fidgety movements (4 months) </li></ul></ul><ul><ul><li>Seizures </li></ul></ul><ul><ul><li>Persistence of primitive reflexes </li></ul></ul>
    18. 18. Case Study-Barry <ul><li>Barry was referred to the Physiotherapy Department at age 4 </li></ul><ul><li>Presenting Complaint </li></ul><ul><ul><li>Balance & fine motor skills deficits. </li></ul></ul><ul><li>Child & Maternal Risk Factors </li></ul><ul><ul><li>None apparent </li></ul></ul><ul><li>Currently undergoing formal MDT Ax </li></ul><ul><li>Clinical Clues </li></ul><ul><ul><li>Delay of verbal & non-verbal communication </li></ul></ul><ul><ul><li>Lack of pretend play </li></ul></ul><ul><ul><li>Unusual & repetitive hand/finger mannerisms </li></ul></ul>
    19. 19. Definite Diagnosis v Uncertain Diagnosis <ul><li>Label </li></ul><ul><li>Aetiology </li></ul><ul><li>Prognosis </li></ul><ul><li>Treatment options </li></ul><ul><li>Acceptance </li></ul><ul><li>Social support </li></ul>Rosenthal et al 2001 HANDBOOK.htm#Handbookpg10
    20. 20. Family Coping
    21. 21. Overview <ul><li>Initial reaction </li></ul><ul><li>Barriers to family coping </li></ul><ul><li>Facilitators of family coping </li></ul>
    22. 22. Definitions of Coping <ul><li>Coping: </li></ul><ul><li>Cognitive and behavioural efforts to manage specific external or internal demands (& conflicts between them) that are appraised as taxing or exceeding the resources of a person </li></ul><ul><li>Family Coping: </li></ul><ul><li>Strategies & behaviours aimed at maintaining or strengthening the stability of the family, obtaining resources to manage the situation & initiating efforts to resolve the hardships created by the stressor </li></ul>Lazarus 1991; McCubbin & McCubbin 1991
    23. 23. <ul><li>Parents with good coping strategies demonstrate: </li></ul><ul><ul><li>Better personal well-being </li></ul></ul><ul><ul><li>Increased involvement in therapy </li></ul></ul><ul><ul><li>More positive interactions in parent-child play </li></ul></ul><ul><ul><li>More positive attitudes about their child </li></ul></ul><ul><ul><li>Result: Higher scores on developmental tests </li></ul></ul><ul><li>The family is the immediate ENVIRONMENT where the child develops </li></ul>Benefits of Parental Coping Boyd 2002
    24. 24. Initial Reaction <ul><li>Diagnosis of Developmental Disability: </li></ul><ul><ul><li>One of the most emotional experiences for parents </li></ul></ul><ul><ul><li>Recognized as a crisis event for some parents that effectively shatters previously held dreams despite existing intrinsic doubts and concerns </li></ul></ul>Rentinck et al 2008; Dagenis et al 2006
    25. 25. Parent Quote <ul><li>“… . you’re suddenly faced with the fact that you haven’t got a normal child, oh, you know, I mean it’s devastating. At the time you sort of grieve for this, you think, “God this is going to be, I mean it’s a lifelong thing. It’s not going to go away. It’s not going to get better. She’s always going to have cerebral palsy.” </li></ul>Piggot et al 2002
    26. 26. Initial Reaction <ul><li>Various models have been suggested based on the stages of bereavement </li></ul><ul><li>What have parents of a child with a disability lost? </li></ul><ul><ul><li>The expected ‘perfect’ child </li></ul></ul><ul><ul><li>The ‘normal’ parenting role </li></ul></ul>Hedderly et al 2003 HANDBOOK.htm#Handbookpg29
    27. 27. Four main responses to diagnosis Heiman 2002 Response Type Associated Emotions Negative Emotional Response Depression, anger, shock, denial, fear, self blame, guilt, sorrow, grief, confusion, despair, hostility, emotional breakdown Negative Physiological Response Crying, not eating, cold sweat, trembling, fear, physical pain and breakdown Positive Emotional Response Prepared for diagnosis, want to hear what can be done for the child Nonspecific Response
    28. 28. <ul><li>Task Time </li></ul>
    29. 29. Attitudes & Effect on Coping <ul><li>Parents felt inundated with negative messages </li></ul><ul><ul><li>Health Care Professionals provided hopeless prognosis </li></ul></ul><ul><ul><li>Parent’s optimism for the future left them open to an accusation of ‘denial of reality’ </li></ul></ul><ul><li>“ I knew her condition was serious and her prognosis poor but, to me, she was my firstborn, beautiful child. Every time I expressed my joy to the staff at the hospital, they said, `She's denying reality'. I understood the reality of my child's situation but, for me, there was another reality ” </li></ul><ul><li>Parents felt they were not denying the diagnosis, they denied and defied the verdict that was supposed to go with it </li></ul>Kearney & Griffin 2001
    30. 30. Assessment of Family Coping <ul><li>Important to determine if coping process will be positive or negative following diagnosis </li></ul><ul><li>Examine relevant factors in the context of daily life which include: </li></ul><ul><ul><li>Availability of internal & external resources & strategies to cope </li></ul></ul><ul><ul><li>Independent factors </li></ul></ul><ul><li>Recognise that family’s experiences change over time </li></ul>Rentinck et al 2006; Taanila et al 2002
    31. 31. Factors Influencing Family Coping <ul><li>Availability of resources & strategies: </li></ul><ul><li>Service provision </li></ul><ul><li>Social support </li></ul><ul><li>Family cohesion & functioning </li></ul><ul><li>Personality variables </li></ul><ul><li>Material resources </li></ul><ul><li>Independent factors: </li></ul><ul><li>Nature & degree of disability </li></ul><ul><li>Gender roles </li></ul><ul><li>Socio-economic status </li></ul><ul><li>Experience of stress & coping </li></ul><ul><li>Stage of family life </li></ul><ul><li>Ambiguity of diagnosis </li></ul><ul><li>Delayed diagnosis </li></ul><ul><li>Expectations for child </li></ul>
    32. 32. Service Provision <ul><li>Family-centred service (FCS) improves coping ability </li></ul><ul><li>Aspects of service provision that influence coping: </li></ul><ul><ul><li>Ability to meet unmet needs </li></ul></ul><ul><ul><li>Providing information re: child’s diagnosis & future, services available & ways to cope </li></ul></ul><ul><ul><li>Acknowledging the child as valuable </li></ul></ul><ul><ul><li>Acknowledging the important role of the parent </li></ul></ul><ul><ul><li>Providing a centralised service </li></ul></ul>Lindbald et al 2005; Law et al 2003; Kerr & Macintosh 2000; King et al 1999; Heaman 1995; Knussen & Sloper 1992
    33. 33. Social Support <ul><li>Sources: </li></ul><ul><ul><li>Health service </li></ul></ul><ul><ul><li>Spouse </li></ul></ul><ul><ul><li>Family </li></ul></ul><ul><ul><li>Friends </li></ul></ul><ul><li>Important aspects: quality & size </li></ul>Rentinck et al 2006 ; King et al 1999; Knussen & Sloper 1992
    34. 34. Family Cohesion & Functioning <ul><li>Co-operation in daily activities leading to a sense of togetherness </li></ul><ul><li>Factors such as: </li></ul><ul><ul><li>Maintaining normality – maternal employment N.B. </li></ul></ul><ul><ul><li>Marital adjustment </li></ul></ul><ul><ul><li>Spousal involvement </li></ul></ul><ul><ul><li>Parents having similar initial reactions – optimistic </li></ul></ul>Taanila et al 2002; Gavidia-Payne & Stoneman 1997; Heaman 1995
    35. 35. Personality Variables <ul><li>Intrapersonal resources of: </li></ul><ul><ul><li>Strong sense of coherence </li></ul></ul><ul><ul><li>(locus of control) </li></ul></ul><ul><ul><li>Emotional stability </li></ul></ul><ul><ul><li>Extraversion </li></ul></ul><ul><ul><li>Agreeableness </li></ul></ul><ul><ul><li>Type of coping strategy used </li></ul></ul><ul><li>Associated with protecting parents of developmentally disabled children against parenting stress </li></ul>Vermaes et al 2008; Margalit & Kleitmann 2006; Rentinck et al 2006; Knussen & Sloper 1992
    36. 36. Independent Factors <ul><li>Nature & degree of disability: </li></ul><ul><ul><li>Behavioural problems </li></ul></ul><ul><ul><li>Level of independent physical function </li></ul></ul><ul><li>Gender roles: </li></ul><ul><ul><li>Care-giving parent experiences more stress </li></ul></ul><ul><li>Socio-economic status: </li></ul><ul><ul><li>Demographic factors – determines material resources </li></ul></ul><ul><li>Experience of stress & coping: </li></ul><ul><ul><li>Strain experienced in life events & life satisfaction </li></ul></ul>Rentinck et al 2006; Gray 2003; King et al 1999; Heaman 1995
    37. 37. Factors Affecting Family Coping Perry 2004 HANDBOOK.htm#Handbookpg30
    38. 38. Case Study-Anna <ul><li>As part of the MDT assessment, the psychologist & social worker carried out initial assessments. </li></ul><ul><li>The psychologist reported that: </li></ul><ul><ul><li>Anna’s mothers initial reaction was one of guilt, shock & confusion </li></ul></ul><ul><ul><li>Anna’s mother also admitted to feeling overwhelmed </li></ul></ul><ul><li>The social worker reported Anna’s mother social situation as: </li></ul><ul><ul><li>A lone parent – living on 3 rd floor apartment of social housing </li></ul></ul><ul><ul><li>Works at the weekends in the local shop </li></ul></ul><ul><ul><li>Grandmother does child-minding at weekend </li></ul></ul><ul><ul><li>No transport but lives near the service centre </li></ul></ul>
    39. 39. Case Study-Barry <ul><li>Barry later received a definitive diagnosis of autism. </li></ul><ul><li>Following the MDT assessment the psychologist reported that Barry’s parents were: </li></ul><ul><ul><li>Relieved to finally have a diagnosis </li></ul></ul><ul><ul><li>Highly motivated to be involved </li></ul></ul><ul><li>Barry’s family’s social situation emerged during the MDT assessment as the following: </li></ul><ul><ul><li>Barry’s mother gave up her job as a receptionist to become a full-time carer </li></ul></ul><ul><ul><li>Barry’s father travels overseas regularly </li></ul></ul><ul><ul><li>Living in a rural location (70 miles from nearest centre) </li></ul></ul><ul><ul><li>2 older children </li></ul></ul><ul><ul><li>Family enjoys outdoor activities </li></ul></ul>
    40. 40. Facilitators of Family Coping <ul><li>Multiple intervention approach of: </li></ul><ul><li>Information provision </li></ul><ul><li>Empowering parents </li></ul><ul><li>Advice </li></ul><ul><li>Providing support </li></ul>Singer et al 2007 HANDBOOK.htm#Handbookpg33
    41. 41. Information Provision <ul><li>Delivering the information in a timely & appropriate manner </li></ul><ul><li>Provide information to parents about local organisations/support services </li></ul><ul><li>Providing information in additional areas to parents: </li></ul><ul><ul><li>Medical information about their child’s condition </li></ul></ul><ul><ul><li>Daily care info </li></ul></ul><ul><ul><li>How to carry out treatment programs </li></ul></ul><ul><li>Workshops or classes for parents </li></ul>Chambers et al 2001; Lin 2000; Pain 1999
    42. 42. Empowering Parents <ul><li>Promotion of coping skills: </li></ul><ul><ul><li>Problem solving </li></ul></ul><ul><ul><li>Empowering interactions using behaviours that are: </li></ul></ul><ul><ul><ul><li>Positive & productive </li></ul></ul></ul><ul><ul><ul><li>Competency producing </li></ul></ul></ul><ul><ul><ul><li>Participatory </li></ul></ul></ul><ul><ul><ul><li>Accepting </li></ul></ul></ul><ul><ul><li>Reframing the situation: </li></ul></ul><ul><ul><ul><li>Promote the positive aspects of </li></ul></ul></ul><ul><ul><ul><li>the situation </li></ul></ul></ul><ul><ul><ul><li>Provide positive feedback for the family’s efforts </li></ul></ul></ul><ul><ul><li>Singer et al 2007; Hastings et al 2005; King et al 2004 </li></ul></ul>
    43. 43. Advice <ul><li>Promote: </li></ul><ul><ul><li>Normal activities & routines within the family </li></ul></ul><ul><ul><li>Emotional activities & openness </li></ul></ul><ul><li>Advise parents to accept help from others </li></ul><ul><li>Advise parents to seek out community resources </li></ul><ul><li>Religious organisations </li></ul>Boyd 2002; Taanila et al 2002; Tarakeshwar & Pargament 2001
    44. 44. Providing Support <ul><li>Service Provision </li></ul><ul><li>Facilitate family communication </li></ul><ul><li>Parent-Parent support groups </li></ul><ul><li>Respite Care </li></ul><ul><li>Individual, family or marital counselling </li></ul>Cowen & Reed 2002; Kerr & McIntosh 2000
    45. 45. Challenging Behaviour
    46. 46. Overview <ul><li>Types of challenging behaviours </li></ul><ul><li>Functions of challenging behaviour </li></ul><ul><li>Strategies to address challenging behaviour </li></ul>
    47. 47. What is Challenging Behaviour (CB)? <ul><li>Challenging behaviour can be: </li></ul><ul><ul><li>“ difficult” or “problematic” behaviour </li></ul></ul><ul><ul><li>Learned behaviour </li></ul></ul><ul><ul><li>A behaviour which does not have serious consequences but is disruptive, stressful or upsetting </li></ul></ul>SCOPE 2007
    48. 48. Challenging Behaviour & Developmental Disability Hastings 2002 Child Behaviour Problems Parenting Behaviour Parental Stress
    49. 49. Prevalence in Developmental Disability <ul><li>7% mild disability </li></ul><ul><li>14% moderate disability </li></ul><ul><li>22% severe disability </li></ul><ul><li>33% profound disability </li></ul><ul><li>50 – 66% of people with challenging behaviour display >2 types </li></ul>Emerson et al 2001; Borthwick-Duffy 1994
    50. 50. Types of Challenging Behaviour <ul><li>Self-injurious behaviour </li></ul><ul><li>Aggressive behaviour </li></ul><ul><li>Stereotyped behaviour </li></ul><ul><li>Non-person directed behaviour </li></ul>SCOPE 2007; Lowe et al 2007 HANDBOOK.htm#Handbookpg45
    51. 51. Risk Markers Associated with Challenging Behaviour <ul><li>Self injury: </li></ul><ul><ul><li>Severe/profound disability, Dx. of autism, deficits in communication </li></ul></ul><ul><li>Aggressive behaviour: </li></ul><ul><ul><li>Male, Dx. of autism, deficit in communication </li></ul></ul><ul><li>Stereotypy: </li></ul><ul><ul><li>Severe/profound disability </li></ul></ul><ul><li>Non-person directed behaviour: </li></ul><ul><ul><li>Dx. of autism </li></ul></ul>McClintock et al 2003
    52. 52. Parent Quote <ul><li>“ Sometimes his behaviour is so bad and unpredictable that I dread even taking him to the shop with me. It seems that anything could set him off.” </li></ul>
    53. 53. Functions of Challenging Behaviour <ul><li>Communication </li></ul><ul><li>Social Attention </li></ul><ul><li>Tangibles </li></ul><ul><li>Escape </li></ul><ul><li>Sensory </li></ul>Addison 2008
    54. 54. Johnston & Reicle 1993 Functions of Challenging Behaviour Functions of CB Obtain Avoid / Escape Non-socially motivated Socially motivated Non-socially motivated Socially motivated Obtain attention Obtain objects/ activities Avoid/escape attention Avoid/escape Activities/ objects
    55. 55. Adams & Allen 2001 Management of CB Assessment Pharmacological Cognitive Behavioural Therapy Pro-Active Behaviour Change Strategies Reactive Behaviour Management
    56. 56. What to do if CB arises during Rx? <ul><li>Step back from the situation. </li></ul><ul><li>Ask yourself: </li></ul><ul><ul><li>What is the purpose of the child’s behaviour? </li></ul></ul><ul><ul><li>What caused the behaviour? </li></ul></ul><ul><ul><li>What is my goal? </li></ul></ul><ul><ul><li>Is what I’m doing helping me to achieve my goal? </li></ul></ul><ul><ul><li>If not, what should I be doing differently? </li></ul></ul><ul><li>Consult with parent and psychologist </li></ul><ul><li>Think about your strategies </li></ul><ul><li>Form a plan </li></ul>
    57. 57. Strategies for Challenging Behaviour <ul><li>Antecedent manipulations – modifications of environmental cues prior to challenging behaviour: </li></ul><ul><ul><li>Predictable schedule </li></ul></ul><ul><ul><li>Alternative modes of task completion – giving child choice </li></ul></ul><ul><ul><li>Task planning – interspersion, difficulty, length & pace </li></ul></ul><ul><ul><li>Incorporating child’s interests </li></ul></ul><ul><ul><li>Clear rules & effective instructions </li></ul></ul><ul><ul><li>Modification of stimuli </li></ul></ul>Machalicek et al 2007; Kern & Clemens 2007; Ruef 1998 HANDBOOK.htm#Handbookpg47
    58. 58. Strategies for Challenging Behaviour <ul><li>Reinforcement: </li></ul><ul><ul><li>Differential reinforcement of other behaviour (DRO) & incompatible behaviour (DRI): </li></ul></ul><ul><ul><ul><li>Praise & Reward </li></ul></ul></ul><ul><ul><ul><li>Immediate & specific feedback – verbal cues </li></ul></ul></ul><ul><ul><ul><li>Opportunity for child to respond </li></ul></ul></ul><ul><li>Skills acquisition – teaching alternative methods of communication: </li></ul><ul><ul><li>Picture exchange system (PES) - Psychologist </li></ul></ul><ul><ul><li>Functional communication training (FCT) - SLT </li></ul></ul>Machalicek et al 2007; Kern & Clemens 2007; Stormont et al 2005
    59. 59. Strategies for Challenging Behaviour <ul><li>Change instructional context – changing the delivery of instruction: </li></ul><ul><ul><li>Embedded instruction </li></ul></ul><ul><ul><li>Rhythmic entrainment </li></ul></ul><ul><li>Self-management: </li></ul><ul><ul><li>Following set activity schedule </li></ul></ul><ul><ul><li>Recording their own behaviours </li></ul></ul>Machlicek et al 2007
    60. 60. Case Study-Anna <ul><li>At age 7 Anna started to demonstrate challenging behaviours - temper tantrums & pinching </li></ul><ul><li>CB occurs: </li></ul><ul><ul><li>During prolonged repetitive activities, particularly late afternoon Rx sessions and </li></ul></ul><ul><ul><li>Anna’s mother reports that these behaviours occur during HAP when Anna is tired </li></ul></ul><ul><li>Strategies: </li></ul><ul><ul><li>Consider Anna’s interests </li></ul></ul><ul><ul><li>Give Anna choice of activities </li></ul></ul><ul><ul><li>Vary the order of activities </li></ul></ul><ul><ul><li>Positive reinforcement of other behaviour </li></ul></ul><ul><ul><li>Appointments scheduled earlier in the day </li></ul></ul><ul><ul><li>Advise Anna’s mother to allow rest before commencing HAP </li></ul></ul>
    61. 61. Case Study-Barry <ul><li>Barry now age 5, is demonstrating behaviours of head-banging & repetitive hand-flapping. </li></ul><ul><li>CB occurs: </li></ul><ul><ul><li>In therapy when either of Barry’s brothers are present and at home when transitioning from one activity to another </li></ul></ul><ul><li>Strategies: </li></ul><ul><ul><li>Routine schedule </li></ul></ul><ul><ul><ul><li>Use of music </li></ul></ul></ul><ul><ul><ul><li>Picture schedule </li></ul></ul></ul><ul><ul><li>Modification of stimuli </li></ul></ul><ul><ul><li>Clear rules & effective instructions </li></ul></ul><ul><ul><li>Alternative modes of task completion </li></ul></ul><ul><ul><li>Liaise with MDT for alternative methods of communication </li></ul></ul>
    62. 62. Family Involvement
    63. 63. Overview <ul><li>Family Involvement: </li></ul><ul><ul><li>Benefits </li></ul></ul><ul><ul><li>Barriers </li></ul></ul><ul><ul><li>Facilitators </li></ul></ul>
    64. 64. <ul><li>Parents have more time available to practice motor skills with the child </li></ul>Mahoney & Perales 2006; Ketelaar et al 1998 Why involve the family?
    65. 65. Benefits of Family Involvement <ul><li>Children learn new skills in a familiar context and environment </li></ul>Mahoney & Perales 2006 ; Ketelaar et al 1998
    66. 66. Benefits of Family Involvement <ul><li>Improved child behaviour </li></ul><ul><li>↓ parental and child stress </li></ul><ul><li>↑ adherence to intervention programmes </li></ul><ul><li>Improved family functioning </li></ul><ul><li>Improved communication </li></ul><ul><li>Enhanced parent-child socio-emotional relationship </li></ul><ul><li>A more holistic approach due to family sharing their knowledge </li></ul>McConachie & Diggle 2007; Siebes et al 2006; Rone-Adams et al 2004; Ketelaar et al 1998
    67. 67. Benefits of Family Involvement for Parents <ul><li>Parents: </li></ul><ul><ul><li>Acquire new skills </li></ul></ul><ul><ul><li>Increase their competence & confidence </li></ul></ul><ul><ul><li>Gain an improved understanding of their child’s development & capacities: </li></ul></ul><ul><ul><ul><li>Appropriate expectations for child’s future </li></ul></ul></ul><ul><ul><ul><li>Realistic goal-setting </li></ul></ul></ul>Mahoney et al 1999; Ketelaar et al 1998
    68. 68. Examining the Evidence for Family Involvement <ul><li>The family unit is recognised as the focus of services </li></ul><ul><li>(The Education of the Handicapped Act Amendments 1986) </li></ul><ul><li> Unethical to carry-out RCT’s that exclude family involvement </li></ul>HANDBOOK.htm#Handbookpg55
    69. 69. Barriers to Family Involvement Siebes et al 2006; DiMatteo 2004; Gavidia-Payne & Stoneman 1997 Internal Factors Limited availability of a parent High levels of parental stress Family conflict Poor psych. adjustment Lower education level Fewer financial resources
    70. 70. Barriers to Family Involvement Siebes et al 2006; DiMatteo 2004; Gavidia-Payne & Stoneman 1997 HANDBOOK.htm#Handbookpg53 External Factors Geographical constraints Low social support Continuity of care Accessing services Satisfaction with service
    71. 71. Home Activity Programs (HAP’s)-Parental Views <ul><li>Almost all mothers admitted they do not perform the whole Home Activity Programme </li></ul><ul><ul><li>66% of caregivers report some level of non-compliance with their HAP </li></ul></ul><ul><li>Mothers only implemented the activities that were enjoyable and not stressful for the child, mother and family </li></ul><ul><ul><li>Mothers did activities that were practical and easy to fit into ADL’s </li></ul></ul><ul><li>HAP can sometimes be another stressor for care-givers </li></ul>Rone-Adams et al 2004; Ketelaar et al 1998
    72. 72. Parent Quote <ul><li>“ It was hard to do the exercises every day. There’s so much else to do-appointments, school, work that it’s hard to fit it all in. When I was with her, I just wanted to have fun with her and not worry about stretches or exercises.” </li></ul>
    73. 73. Stress & HAP Compliance <ul><li>↑ stress in the lives of parents of children with disabilities </li></ul><ul><li>Multiple stressors in the parents lives </li></ul><ul><li>Significant relationship between parental stress and compliance with HAP </li></ul><ul><li>Therapists responsibilities: </li></ul><ul><ul><li>Instruct care-givers on HAP </li></ul></ul><ul><ul><li>Identify care-givers with ↑ stress levels </li></ul></ul><ul><ul><li>Recommend ways to ↓ stress </li></ul></ul>As stress ↑, compliance ↓ Rone-Adams et al 2004
    74. 74. Family Involvement Coming to Grips Striving to Maximise Breakthrough Improvement in child’s function ↑ level of knowledge and understanding Trust in therapeutic relationship Piggott et al 2003
    75. 75. Facilitating Family Involvement
    76. 76. Class Task
    77. 77. Service Strategies for Facilitation <ul><li>Centralising services </li></ul><ul><ul><li>Access to a contact person/ key worker </li></ul></ul><ul><ul><li>Continuity & consistency of service providers </li></ul></ul><ul><li>Family centred approach </li></ul><ul><ul><li>Positive staff attitudes about family involvement </li></ul></ul><ul><ul><li>Caregivers recognised as equal participants in the process </li></ul></ul><ul><li>Flexibility with regard to scheduling appointments </li></ul><ul><li>Open communication between all MDT members </li></ul>Siebe et al 2006; Kruzich et al 2003; Hanna et al 2003; Ketelaar et al 1998 HANDBOOK.htm#Handbookpg58
    78. 78. Therapist Strategies for Facilitation <ul><li>Involve parents in goal-setting & decision-making </li></ul><ul><li>Educate </li></ul><ul><li>Motivate parents </li></ul><ul><li>Individualise programme to the </li></ul><ul><li>family’s needs </li></ul><ul><li>Facilitate family coping </li></ul><ul><li>Address challenging behaviour </li></ul>Siebe et al 2006; Kruzich et al 2003; Ketelaar et al 1998
    79. 79. Education <ul><li>Education should be individualised </li></ul><ul><ul><li>Assess parental information needs </li></ul></ul><ul><li>Address significant concerns of parents </li></ul><ul><ul><li>Re: the development & future prospects of the child </li></ul></ul><ul><li>Ensure co-ordination & consistency of information giving </li></ul><ul><li>Providing information to parents: </li></ul><ul><li>Verbal information is preferred by parents for general information: </li></ul><ul><ul><li>Avoid overwhelming the family with suggestions </li></ul></ul><ul><ul><li>Provide clear & understandable information </li></ul></ul><ul><li>Written & pictorial information preferred for HAP </li></ul><ul><li>Practical information giving (demonstration): </li></ul><ul><ul><li>Empower parents to teach their child new skills </li></ul></ul><ul><ul><li>Teach parents problem-solving skills and encourage creativity in their treatments </li></ul></ul>Case 2000
    80. 80. Individualisation <ul><li>Families are all unique </li></ul><ul><li>Each family may wish to have a different level of involvement </li></ul><ul><li>Individualization of intervention, based on child & family’s needs & priorities </li></ul><ul><li>Parent’s as equal participants in decision making & goal-setting </li></ul><ul><li>Adapt the program to family’s capabilities </li></ul><ul><li>Incorporate program into family’s daily schedule </li></ul>King et al 2004; Ketelaar et al 1998; Wehman 1998
    81. 81. Motivation <ul><li>Enquire about potential barriers to participation </li></ul><ul><ul><li>Develop plans to overcome these barriers </li></ul></ul><ul><li>Treatments & discussions should offer parents hope </li></ul><ul><li>Collaborative relationship between parent & therapist using empowering interactions </li></ul><ul><li>Info packs </li></ul><ul><ul><li>Re: importance of attendance & adherence </li></ul></ul><ul><li>Make self-motivation statements to parents </li></ul><ul><li>Provide supervision to parents & collaborative reassessment of goals </li></ul>Novak & Cusick 2006; Nock & Kazdin 2005; King et al 2004; Case 2000
    82. 82. Kaiser & Hancock 2003
    83. 83. Case Study-Anna <ul><li>Once Anna’s mother is coping better from a psychological point of view, we want to increase her participation by initiating a HAP. </li></ul><ul><li>Practical difficulties for Anna’s mother in implementing the HAP : </li></ul><ul><ul><li>Resources – lack of suitable open space & equipment (therapy ball & wedges) </li></ul></ul><ul><ul><li>Lack of understanding of condition & the child’s future </li></ul></ul><ul><li>Strategies: </li></ul><ul><ul><li>Education & Motivation - </li></ul></ul><ul><ul><ul><li>Importance of HAP & benefits </li></ul></ul></ul><ul><ul><ul><li>Oral info & pictorial HAP </li></ul></ul></ul><ul><ul><ul><li>Practical demonstration of HAP (one exercise at a time) </li></ul></ul></ul><ul><ul><ul><li>Empowering mother </li></ul></ul></ul><ul><ul><ul><li>Exercise log book </li></ul></ul></ul><ul><ul><li>Individualising - </li></ul></ul><ul><ul><ul><li>Ax existing resources at home & suggest innovative alternatives </li></ul></ul></ul><ul><ul><ul><li>Incorporate into ADLs </li></ul></ul></ul>
    84. 84. Case Study-Barry <ul><li>Following the initial Physiotherapy Ax a HAP was formulated with Barry’s mother. </li></ul><ul><li>Practical difficulties for Barry’s family in implementing the HAP were: </li></ul><ul><ul><li>Time – due to other children </li></ul></ul><ul><ul><li>Accessing service – geographical constraints </li></ul></ul><ul><ul><li>Challenging behaviour </li></ul></ul><ul><ul><li>Lack of spousal support </li></ul></ul><ul><li>Strategies: </li></ul><ul><ul><li>Individualisation: </li></ul></ul><ul><ul><ul><li>Consider other family supports eg. siblings </li></ul></ul></ul><ul><ul><ul><li>Incorporate into ADLs </li></ul></ul></ul><ul><ul><li>Education & Motivation: </li></ul></ul><ul><ul><ul><li>Oral information backed up with written information </li></ul></ul></ul><ul><ul><ul><li>Participation of both parents in information sessions </li></ul></ul></ul><ul><ul><ul><li>Teaching parents skills: problem-solving & progression. </li></ul></ul></ul><ul><ul><li>Service: </li></ul></ul><ul><ul><ul><li>Regular contact between therapist and family (by telephone) </li></ul></ul></ul><ul><ul><ul><li>Flexible appointments and open communication within the MDT </li></ul></ul></ul>
    85. 85. Family Involvement 1. Identify Family Goals 2. Identify Barriers 3. Identify Facilitators 4. Develop Plan with Parents 5. Evaluate Goal Progress 6. Modify Plan
    86. 86. WHO ICF Model
    87. 87. WHO ICF Model POOR TRUNK CONTROL Cerebral Palsy
    88. 88. WHO ICF Model FOOTBALL Cerebral Palsy
    89. 89. WHO ICF Model SCHOOL Autism
    90. 90. Group Work
    91. 91. Conclusion <ul><li>The family plays an important role in development disability </li></ul><ul><li>Consider the influence of the following on family involvement: </li></ul><ul><ul><li>Family Coping </li></ul></ul><ul><ul><li>Challenging Behaviour </li></ul></ul><ul><li>The WHO ICF model should be applied to physiotherapy practice in developmental disability </li></ul><ul><li>Website: </li></ul>
    92. 92. Thank you for your attention & co-operation. Any Questions?