ASSIGNMENT ; PRESENTATION OF LITERATURE REVIEW Review the .docx

ASSIGNMENT ; PRESENTATION OF LITERATURE
REVIEW
Review the available literature which will be presented along
with reflections. A range of literature sources should be used
including empirical research (this can include both national and
local research).
Various methods can be used to present the literature review
and students will need to include a written summary of the key
points of the presentation (750-1000 words). This summary
should include a reference list relating to all the literature
referred to in the presentation. The sections of the presentation
are as follows:
· Title of research topic
· rationale
· Introduction
· Brief discussion of literature search terms and key literature
used
· Thematic review of the literature
· Implications for social work/social work practice
British Journal of
Learning Disabilities
The Oﬃcial Journal of the British Institute of Learning
Disabilities
ORI G IN AL ARTI CLE
How adults with learning disabilities view living independently
Rebecca J. Bond, Occupational therapist, NHS Plymouth,
Plymouth Primary Care Trust, Westbourne Unit, Scott Business
Park, Beacon Park Road, Plymouth, PL2 2PQ, United Kingdom.

(E-mail: rebecca. [email protected]) and Jenni Hurst, Lecturer,
University of Plymouth, Peninsula Allied Health Centre,
Derriford Road, Plymouth PL6 8BH, United Kingdom
Accessible summary • Nine people with learning
disabilities talked about living on their own.
· They talked about good and bad things in their lives.
· They said it is sometimes hard but better than living in
residential care.
· They want people who provide services to know that it can be
hard to live alone.
Summary It is seen as increasingly important for people with
learning disabilities to be supported to live independently and
manage their own self care, productivity and leisure activities.
This qualitative study explored the experiences of nine adults
with mild learning disabilities who lived alone with minimal
support. Their narratives were analysed using thematic analysis
and seven themes emerged. These were feelings on living alone,
practical issues, support issues, choice and control,
vulnerability, health issues and the impact of having a learning
disability. This study has implications for service users,
professionals and service providers working with people with
learning disabilities. In particular, the issues raised reflected
the need to increase social inclusion and provide the right level
of support. Participants talked about service providers needing
to be aware of their vulnerability and wanted people to respect
their right to make their own choices.
Keywords Independent living, learning disabilities,
qualitative research, service users’ narratives

ª 2009 Blackwell Publishing Ltd, British Journal of Learning
Disabilities, 38, 286–292
doi:10.1111/j.1468-3156.2009.00604.x
Introduction
One of the key principles outlined in the English Policy
documents Valuing People (Department of Health 2001) and
Valuing People Now (Department of Health 2009) is to enable
people with learning disabilities to have greater choice and
control over their lives, including where they live and support
to live independently. Occupational therapy is one of the
professions working with people with a learning
This study was completed as part of a Masters degree in
Occupa- tional Therapy undertaken at the University of
Plymouth.
disability within their networks to assist them in to live
independently (Donati 2009). Understanding the impact of
living alone can aid such professions to assist people to gain
appropriate support.
The current changes in service provision planning suggest that
there will be increasing numbers of people choosing to live
independently or with support in their own homes and the need
to increase the availability of accessible and sustainable
housing (Office for Disability Issues 2008). The Down’s
Syndrome Association (2008) while acknowledging the
aspirations of people with learning disabilities, expresses
concern at the level of support available and whether this will
meet the needs of people with learning

287
disabilities. There still appears to be a lack of evidence to
support the successful implementation of these planned changes
(Forbat 2006).
Literature review
Evidence exists that people who have moved from larger
institutions preferred living in the group homes they moved to
(Forrester-Jones et al. 2002; Holland & Meddis 1997). Studies
such as those by Stancliffe & Keane (2000) and Barlow &
Kirkby (1991), concluded that people in supported living
placements had more life satisfaction than those in residential
care. Currently, there is a lack of evidence to suggest that they
like to live alone.
Within this framework, independent living can be defined as
enabling independence by receiving the right support how and
when it is required (Morris 2004). While there has been an
increasing move into the community in the last decades there is
still no accurate data detailing the number of people with
learning disabilities living independently (Beadle Brown et al.
2004). People who live independently need a complex
repertoire of occupational skills and the opportunity to decide
which aspects of their occupational performance need additional
support to maintain a healthy lifestyle (Heaton et al. 2001).
One difficulty may be the ability of the individual to maintain
and improve their occupational performance with less support.
Occupational therapists assist with this by identifying the
strengths and needs for the required range of skills required by
a person with a learning disability and their support network
(Donati 2009). Inclusion in the community is dependent on
having the opportunity to contribute to development of
accessible services (Parry & Jones 2009). Friendship has been
highlighted as an important compo- nent of support by people

with learning disabilities and accessibility of friends should
always be considered when moving to independent
accommodation (Long & Holmes 2001; McVilly et al. 2006).
The vulnerability of those who live alone has also been
highlighted (Cooper 2002; Whittell & Ramcharan 2000).
Maintaining health is a concern if someone is living
independently and primary care staff need to be aware of people
with learning disabilities using the service (Hames & Carlson
2006). The lack of confidence of primary care workers in
treating people with learning disabilities remains an area of
concern (McConkey 2000). This could account for the lack of
practical support being offered to the participants in this study
around taking their medication. Similarly, a review of
integrated care approaches found there was a lack of published
studies looking at the potential benefits of adopting a more
integrated approach to treating their physical health needs
(Jansen et al. 2006). Living alone does not mean that there are
not issues to contend with and it is not always possible to be
part of the local community
(Holman 2007). This study provides the views and perceptions
of nine people with learning disabilities who have already
achieved independence and wish to contribute to the debate.
Aim of the research
Living independently is viewed as desirable by many people
with learning disabilities and service providers. The aim of this
study was to research the views of people with learning
disabilities about the reality of living independently and to
hear their stories.
Informed consent
Gaining informed consent from people with learning disabilities
raises ethical issues (Hutchison 2005). In this study, people
with mild learning disabilities who were already demonstrating
the skills needed to live alone were asked to participate. It was
therefore concluded that they would be able to give informed
consent if the materials were presented in an accessible and

meaningful manner. Consent to conduct this study was obtained
from the local ethics committee. Compliance with the Data
Protection Act (1998) was maintained with all research data.
Method
A qualitative research design was chosen for this study as the
aim was to explore the experience of living alone and to address
the increasing desire of people with learning disabilities to have
their voices heard and to take an active role in learning
disability research (Department of Health 2006). The semi
structured interviews were completed at times and venues to
suit participants. In designing the interview structure
consideration was given to the needs of the participants. Some
people with a learning disability may have limited language
skills and a difficulty in answering abstract questions leading to
communication difficulties during interviews (Clarke et al.
2005). The interview schedule contained clearly structured open
questions to assist understanding.
The interview structure was devised using the Canadian Model
of Occupational Performance (Canadian Association of
Occupational Therapists 1997) allowing for an occupational
focus on the areas of self care, productivity and leisure within
the context of the participants’ environment. Data were coded
and analysed using thematic analysis to understand the issues
for these nine people who were currently managing to live
independently. Each interview was audio taped and transcribed
and the data coded into themes (Rudestam & Newton 2001). As
the interviews progressed additional questions were added to
explore emerging themes identified by the first
participants.
288 R. J. Bond and J. Hurst

Trustworthiness was attained by formal supervision of the
research project and by the sharing the data with an experienced
mentor for advice. The interviewer kept notes to enable
reflection on participants’ experiences.
Participants
There were five female and four male participants whose ages
ranged from 33 to 56 years who were living alone and receiving
minimal or no formal support at home. Six of the participants
had moved out of residential care or more supported living,
three had previously lived with partners in the community. For
the purpose of this study, minimal support was defined as two
visits a week or less by a paid carer to support that person to
live independently. The study did not consider the amount of
informal support from family, friends or other professionals
outside the home.
Participants in this study were recruited by convenience
sampling. A recruitment letter was disseminated to the
researcher’s colleagues within the Learning Disability Service
and related local independent sector. Suitable participants were
initially approached via this third party to determine their
interest in taking part. This form of recruitment has been shown
to be effective when recruiting participants with learning
disabilities (Melton 1998). An information sheet was designed
with symbols to assist understanding and to make the
information accessible for potential participants. An audio tape
containing the same information was also made available. The
consent form was symbolised to maximise understanding. It
was explained to all participants that their confidentiality
would be assured. Participants were given the choice to provide
their own pseudonym, to further their active involvement in the
research process and four chose their own.

Findings and discussion
The coded data from the transcripts produced seven main
themes which reflected the views of all the participants;
The themes were ‘feelings about living alone’, ‘practical
issues’, ‘support’, ‘choice and control’, ‘vulnerability’, ‘health
issues’, and ‘the impact of having a learning disability’.
Feelings about living alone
These included both positive and negative aspects of living
alone with concerns about the future and being independent.
They valued being independent and having time to relax. Most
participants had chosen to live by themselves and associated
living alone with feeling that they could cope with independent
living.
Robbie, who had no close friends or relatives, also spoke of
how he felt about living alone and how isolated he felt it can
be:
‘It gets very very lonely. Sometimes I go to bed crying, cos I’m
lonely. And people don’t understand how lonely you can get’
(Robbie)
When comparing living alone to living in residential care,
participants said they preferred living alone; the reasons given
included enjoying privacy, having their own space and feelings
of freedom. These findings are similar to those of previous
studies (Barlow & Kirkby 1991; Stancliffe & Keane 2000)
whereby people in semi independent or independent
accommodation expressed greater feelings of autonomy. This
desire links to the aims of Valuing People (Department of
Health 2001) and Valuing People Now (Department of Health
2009) as people with learning disabilities continue to ask for
greater independence, including being supported to live
independently.
Practical issues
These dealt with everyday concerns such as home care, money
issues and neighbours. Other issues related to self care, tasks
outside the home including shopping, transport and work. The

participants related how they dealt with practical activities. The
participants were independent with tasks at home to varying
degrees and received different amounts of support. The majority
of participants struggled with more complex aspects of living
independently, such as money management and budgeting.
There were no studies found directly relating to how people
with learning disabilities feel about managing practical
activities at home. Studies such as those by Hallgren & Kottorp
(2005) and Melton (1998) demonstrate the importance of
feelings of empowerment when undertaking daily activities. In
the present study, the ability to manage practical tasks and the
need for support with them were interrelated with the themes of
support and choice and control. Attitudes to balanced
occupations varied, for example Mark and Sarah both worked
part time in different voluntary capacities.
‘I take the meals to the customers and I take the rubbish out,
clear the tables…I love working there…’ (Mark)
In contrast, Celia, who had no regular day time occupation
commented about her daily routine:
‘It’s very boring…get up, wash, dress, breakfast, clear up.
That’s about it.’ (Celia)
This supports the available literature linking positive day
opportunities such as employment with increased levels of self
esteem, motivation, well being and independence (Forrester-
Jones et al. 2002; Reid & Bray 1998). It also reflects some of
the frustration related by Anne, in her
289
interview, when she had nowhere to go in the day time (Holman
2007).
Support
This theme covered the positive and negative aspects of
receiving different types of formal and informal support and

supporting others. The support that people described receiving
was separated because the participants viewed them in this way;
formal or informal support. All the participants received formal
support to assist them to live independently. The majority of
participants received two visits per week of tenancy support, to
help them with practical tasks at home. Some participants
received emotional support including attendance at mental
health day units or counselling. Others received visits from
community support workers to provide emotional support and to
monitor their mental health.
They had clear opinions about the support they received and
how this related to their perceptions of living independently.
Most participants were happy with their level of support, but
some people expressed concern that they were not given a
choice in who supported them, or the time or length of the visit:
‘One I didn’t like very much. Alright but a bit bossy. ‘Come on,
put your oven on!’ And I thought ‘here we go again!’’ (Maria)
Participants had varying contact with partners, family or
friends. Several people spoke about receiving practical or
financial support. The majority of participants mostly had
friends who also had learning disabilities. The importance of
having meaningful relationships with people who are not paid to
support them (McVilly et al. 2006) is supported by the views of
some participants in the present study who valued having
support from friends, as well as the isolation felt by some of the
participants who did not.
Choice and control
This theme covered positive and negative feelings and the
perceived power of others. All of the participants had chosen to
live independently and during the interviews this emerged as a
major theme.
Perceived lack of choice and control
Although living independently with minimal support, most
participants still felt as though they had to continually prove
their right to live alone in the community. This lack of choice
and the power of others, particularly those in authority,

appeared to feature significantly in their lives. Topics discussed
by participants demonstrated that they perceived a lack of
choice and control; from things such as being
allowed to keep a pet (Kirsty), being moved without proper
consultation (Jake) or having her children removed (Celia). This
calls into question the fine line between assisting a vulnerable
person who has limited cognitive ability and imposing
restrictions upon that person to live within defined acceptable
limits. It has been argued in the literature that in providing
choice for people with learning disabilities, it is important that
the professional duty of care is not
overlooked (Smyth & Bell 2006).
Feelings around being in control and having choice
Some participants had very positive experiences about being
enabled to make choices for themselves. Mark was aware that
he did not have to take any of the advice given to him about
keeping safe and made his own judgements about whether he
walked through the local park or not. Kirsty spoke of being
aware that she did not have to listen to advice and could make
her own decisions. Sarah felt that she was in control over the
support she received and that she chose what to ask for
assistance with:
‘Well I do it myself, if I want any help, they give me help with
it...And if I wanted any help, they’re on the phone and that’
(Sarah).
Choice and rights were two of the key objectives set out in
Valuing People (Department of Health 2001) detailing what
people with learning disabilities wanted. It would seem from
this study that there are still issues that need to be addressed in
this area to enable people to truly feel they are enabled to make
choices for themselves.
Vulnerability
People with learning disabilities are frequently classed as
vulnerable (Clarke et al. 2005). The vulnerability of the
individuals interviewed emerged as a major theme in the study.

Although participants were asked about keeping themselves
safe, they volunteered information about past and present abuse
and how their vulnerability had lead to them experiencing
difficult situations
All of the participants lived alone in inner city locations, some
in areas known to have problems with drugs and high crime
levels. Robbie, Maria and Jake reported that they lived next
door to people who were drug addicts and this caused them
problems in terms of not feeling safe, of being threatened and of
anti social behaviour such as loud music. Both Robbie and
Maria had experienced things thrown through their windows in
recent months. Evidence found by Cooper (2002) supports the
findings of the present study regarding the vulnerability of
people with learning disabilities. Whittell & Ramcharan
(2000) also identified the victimisation by others in a local
community towards people with learning disabilities.
However, it has been
found that people are able to learn to keep themselves safer
when given the right support to do so (Long & Holmes 2001).
Eight out of the nine participants interviewed talked of being
subjected to abuse of some kind. Some of this was past
recollections and some more recent. Bruce spoke of trusting
someone who said they would be his friend and then stole from
him. Celia was subjected to physical abuse and theft from her
son. Robbie spoke about being sexually abused as a child and of
being recently cheated financially and verbally assaulted. Kirsty
was aware of how vulnerable she was when going out drinking
alone and felt she was often taken advantage of sexually:
‘I’ve grown up with bad experiences…when I was younger and
all the way up, even now. With people taking advantage of
me, abused and raped.’ (Kirsty).
Studies such as those by Whittell & Ramcharan (2000) and

Taggart et al. (2006) are pertinent to those living indepen-
dently in the community. The findings of the present study
support these as participants described their vulnerability and of
how they had been taken advantage of and abused. There is also
a strong link between vulnerability, abuse and lack of choice
and control as studies by White et al. (2003) and Calderbank
(2000) have demonstrated. Calder- bank (2000) suggested that
community living and empowerment policies actually
contribute to increasing the
potential for abuse of already vulnerable people.
Health issues
This study was not designed to examine the health of the
participants and there were no questions specifically asking
about health in the interview schedule. However, in the course
of discussing issues around support needs and coping,
information regarding health was volunteered by the majority of
participants. This highlights how closely linked issues around
health were to living independently for the people interviewed.
A variety of health problems including asthma, diabetes,
epilepsy and arthritis were experienced by participants. The
main impacts of these conditions on living independently
appeared to be around remembering and understanding the
prescribed medication. No studies were identified directly
relating to issues surrounding concordance with medication for
people with learning disabilities living independently. However,
given that cognitive skills such as memory and ability to tell the
time are problems for many people with learning disabilities,
the ability to take medication correctly has the potential to be a
problem.
Several of the participants interviewed spoke of being reminded
by support workers to take medication, although none of them
were employing practical aids such as blister packs or alarms to
remind them when to take a dose. The
ability to take medication and keep healthy was directly linked
by several participants to being able to remain living

independently:
‘If I don’t take my tablets and look after myself, people will be
doing stuff like putting me in a home…and it will be their
decision instead of mine.’ (Kirsty)
This links directly to the perceived lack of choice and control
discussed by most participants. Some of them were worried
about their independence ‘being taken from them’ if
professionals thought they were not managing their health
needs sufficiently. This could account for the lack of practical
support being offered to participants in this study around
taking medication. Similarly, a review of integrated care
approaches for people with learning disabilities (Jansen et al.
2006) found there was a lack of published studies looking at
the potential benefits to adopting a more integrated
approach to treating the physical health needs of people with
learning disabilities. In this study, eight out of the nine
participants were accessing mental health services. Again,
although participants were not specifically asked about their
mental health, several people volunteered information about
their mental health support, in all cases this was because of a
past abuse or a traumatic event. It is well documented that
people with learning disabilities are more likely than the
general population to have mental health problems (Priest
& Gibbs
2004).
The impact of having a learning disability
Several of the participants spoke about what having a learning
disability meant to them in terms of living independently in the
community. Jake felt that the only difficulty having a learning
disability caused him was with literacy. Kirsty related that aside
from needing assistance with practical things like cooking and
money management, her learning disability led her to being very
trusting of others, which left her vulnerable. Robbie talked the
most about the negative stigma of having a learning disability
and how that had caused him to have major problems with
harassment from his local community and lack of support and

understanding from statutory services such as the local council
and police:
‘Round here they don’t understand. I had one up the
road…swore at me, told me to ‘go back to [mental health
hospital], go back to your cage’…It’s really awful; I go up the
street, someone’s taking the mick out of me. Awful.’ (Robbie).
The majority of participants socialised predominantly with other
people with learning disabilities, and did not actively engage in
local community activities. Social isolation such as this can
lead to problems with self
291
esteem and feelings of worth as well as a sense of
powerlessness. (Jahoda & Markova 2004). Many participants
felt powerless in different aspects of their daily lives and were
also receiving mental health support. Johnson (2003) uses a
case study to demonstrate an individual’s perceptions of how
understanding she was different from others resulted in a
negative self image and led to low self esteem and stress.
Limitations of the study
This was a small scale study, completed within a limited time
scale and therefore the findings cannot be generalised. Access
was only available to service users who were known to the local
service providers. Because of the time scale there was limited
verification of the data; to increase the trustworthiness of the
study, the researcher would have wished to share a symbolised
summary of each interview with participants.
Implications for research
Because of the preliminary nature of this study, further research
is recommended. Research exploring what is required to support
and develop occupational performance during transition is also
required if less able people are to make a move into independent
living.

Conclusion
It is clear from the data collected for this study that the four key
principles set out in Valuing People (Department of Health
2001) need to remain a priority for evoking change and
improvements in service delivery. The findings of this study
support this policy in that the people interviewed valued and
desired greater rights, choice, inclusion and independence.
Ways in which people can be helped to achieve these wishes
include; improving support to enable increased social inclusion
for people, getting the levels of support right for individuals,
raising awareness of vulnerability and increasing choice and
autonomy for people.
The participants in this study related that they often have
difficulties in their everyday lives and they can sometimes
struggle to various degrees to manage their health, safety and to
undertake practical tasks associated with independent living.
However, when comparing their present lifestyle with
alternatives, the participants were very clear in their desire to
remain living independently:
‘I prefer to be independent…I’m happy, I’m happy learning the
hard way’. (Bruce)
‘I prefer to live as I am…I’ve got my freedom, I can do what I
want.’ (Robbie)
Acknowledgements
Thank you to the 9 people interviewed who talked so openly
about their lives. Thanks also to the following for providing
financial support for the MSc; Elizabeth Casson Foundation,
The Collage of Occupational Therapists (Press- ilitt Care
Fellowship Award) and NHS Plymouth.
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