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Community Family Care Intervention Model For Families Living
 

Community Family Care Intervention Model For Families Living

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    Community Family Care Intervention Model For Families Living Community Family Care Intervention Model For Families Living Presentation Transcript

    • Community family care intervention model for families living with severe mental illness in a community in KwaZulu-Natal . Phase One Experience of isiZulu Families living with severe Mental illness Charlotte Engelbrecht , Prof. Madhu Kasiram School of Nursing University of KwaZulu-Natal
    • Background
      • With the deinstitutionalisation process world wide 1 , and the change of the focus of health care from institutes to primary health care , thus community-focused care, families play an more important role in the care of their severe mental ill members.
      • Concerns are raised 2 following this movement:
        • Indiscriminate discharges
        • Inadequate family and community preparation and support
        • Inadequate community resources
        • Inadequate continuity of mental health care
        • Revolving door admissions
        • Neglect and abuse
        • Homelessness
    • Background (cont)
      • Family members do not understand how mental illness comes into their family, and often think their family member is bewitched 4
      • Lack of financial resources, lack of alternative placement options, 3 stigma 5 and feelings of burden in families 6 deepens the challenges of the mental health user and the family responsible for the primary
      • care of the person living with severe mental illness
    • Problem statement
      • The nature of intervention for families living with severe mental illness in the community is not yet described or tested for effectiveness in the isiZulu community.
      • The problems that families living with severe mental illness is not clearly and in-depth understood by the caring professions (hence the lack of services).
    • Research Question
      • How can families living with severe mental illness be cared for in the community and how can psychosocial rehabilitation for the person living with severe mental illness and their families be facilitated?
    • Aim
      • This paper focus on the first aim of the study
      • The aim of the study is to understand the phenomena of families living with severe mental illness
      • To develop an effective family care intervention model for families living with severe mental illness in a South African community context.
    • Goals
      • Investigating and developing an in-depth understanding of the phenomenon of families living with severe mental illness
      • Exploring, investigating and describing the perceptions and opinions of families and community members on interventions for families, living with severe mental illness, in a South African community context in KwaZulu-Natal
    • Paradigm:* Meta-theoretical assumptions
      • A narrative therapy and post structuralism background
        • In referring to families living with severe mental illness, the researcher does not exclude the person experiencing the severe mental illness, but externalizes severe mental illness as a problem, and includes the mental health service user as a member of the family with the same status and value,
        • that, when working with families living with severe mental illness, society and the helping professions are informed by discourses of pathology . These discourses are informed by “taken-for –granted ways of speaking about people’s lives and relationship practices that have the effect of marginalizing and objectifying people who seek help” (White,1998:173)
        • that families are the authors of their own lives and as they live they are authoring a unique story (White,1998).
        • Families are not to be blamed for the Mental Illness they are living with and that Mental Illness is not the symptom of their dysfunction, but signs of specific challenges the family is faced with.
        • The family is embedded within a community and that the community should be able to provide a matrix of care to families living with
        • severe mental illness.
    • Paradigm* Theoretical assumptions :
      • The consultation of families in regard to their care in the community is of outmost importance. This empower families and allow them to own the process of recovery (Fadden, 2006:23-38)
      • In a postmodern context the concept “ family ” is defined wide enough to include various family structures.
        • a family system can be defined as any social unit with which an individual is intimately involved 9
        • Families are groups related by kinship, residence, or close emotional attachments and they display four systemic features - intimate interdependence, selective boundary maintenance, ability to adapt to change and maintain their identity over time, and performance of the family tasks 10
        • In this paper “family” included a single family member relating the families story
      • Community will be defined as widely as possible, as the meaning of the concept might derive more specific as the research process develops. Community is seen tentatively as the social structure the family is embedded in.
      • Severe mental illness includes schizophrenia, bipolar mood disorder and major depression, Post Traumatic Stress Disease Schizophrenia might be more prominent as it is described as the most disabling of the mental illnesses.
    • Paradigm* Methodological assumptions
      • “ Reality is subjective and multiple as seen by participants in a study” 11
      • in interacting with the phenomena and the research participants
      • the research process is value-laden and multi-subjective
      • the research process is informal and evolving decisions will be made
      • as the researcher involves with the research participants, the personal voice of the researcher will be weaved with the voices of the participants
      • because of the nature of the study, the researcher will use an inductive process and thus will not provide a theoretical framework for the content of the research, but will compare derived and generated knowledge with existing frameworks of knowledge as data analysis progressess. 11
    • Research Methodology
      • The use of grounded theory as a key method for family studies 12 .
      • Grounded theory is compatible with the diversity and richness of data when faced with multiplicity of complex processes and layers of meanings in research done on family work 13
    • Research Methodology
      • In this phase in-depth narrative interviews was used, where the researcher asked one question:
      • Question:
      • Tell me the story of your family’s life living with Mental Illness in the Community
    • Population
      • The target population for phase one was families who are living with severe mental illness in the Umlazi district of KwaZulu-Natal
    • Sampling
      • Purposive sampling was done to identify families living with severe mental illness. The researcher developed relationships with the staff of Mental Health Clinics in the Prince Mshiyeni Memorial Hospital. The Sister in Charge selected and invited Family members of Mental Health Service Users attending the Mental Health Outpatient clinic to participate in the research.
      • 4 families participated:
      • It was interesting that though the invitation was made for families to meet with the researcher,
          • 4 women responded to the call
            • Retired nurse and community volunteer (sister of the MHSU)
            • Business woman and seamstress (mother)
            • Retired nurse went back to work (wife and mother)
            • Unemployed, divorced mother of 6 children (mother)
          • All families lived longer than a year and less than 50 years with Severe Mental Illness
    • Data collection
      • In-depth interviews , ( unstructured) of the participants who can provide data that might best answer the research questions.
      • All interviews will be audio taped with the permission of the participants and transcribed.
      • Notes will also be made of observations done throughout the research process.
      • Data is managed with respect and confidential and is only used for the purpose of this
      • study 11 .
    • Trustworthiness*
      • Guba’s 16 strategies of trustworthiness applies:
      • Credibility
      • Transferability
      • Dependability
      • Conformability
    • Ethical Strategies*
      • The research proposal was submitted to the ethics committee of the University of KwaZulu-Natal
      • Permission to do the research was given by both The Department of Health and the research committee of the Prince Mshiyeni Memorial Hospital
      • Participants was invited to offer their views, experiences and stories to the researcher.
      • The researcher took the position of respect and decentralize her power as researcher and therapist by taking the position of “Not-knowing ”
      • Strategies for Autonomy, Privacy, Benefice, No harm
      • was observed
    • Ethical strategies (cont)*
      • All research notes, audio or video types is locked away with restricted access to only the researcher. No names will be mentioned in the research and the information provided will only be used for the purposes of the research.
      • General benefice to all Mental Health Care Users was explained to the participants in the study. Services will be provided to the participants in the process of the research is free of charge and the participants where provided means of transport when they met the researcher at a place different from their daily routine
      • To participants. As research many times ask questions that might open un- dealt with issues, the researcher will make sure
        • that the participants will be referred to the necessary mental health care provider.
        • Participant can withdraw statements anytime from the data base,
        • should they feel that the data is to personal or too revealing.
    • Data analysis
      • The data analysis process takes place simultaneously with the data collection process.
      • Literature review of data to compare the data emerging from the research with previous data and research done will also be part of the process 14
      • Coding will be done according to the grounded theory methods , which includes open coding , selective coding and theoretical coding 15
    • Findings
      • Multiple responsibilities
        • There are 14members in the family. “I am looking after them all”. The boys and men sleep in the rooms at the back and the girls sleeps inside the house
        • health care in the community
        • work at the church
      • Divorced from the child’s father. This sick child’s father does not see him much. It is some times hard to let the business grow, when looking after him.
      • “ The girls left this unhappy house, and I need to look after them (three mentally ill family members) on my own”
      • Retired, Started to work night duty again
      • I have 6 children, two are diagnosed with mental illness, I am divorced and I am unemployed
    • Findings (continue)
      • Emotions
        • Embarrassed
        • Worried
        • Rejected
        • Not respected
        • Anger
        • Frustration
        • Cheated
    • Findings (cont) Issues of care
      • Difficulty
        • He refused to wash
        • He did not recognize me,
        • he did not want me to touch him,
        • he did not want to eat my food
        • He is confused and disappear
        • He is always out, roaming the community
      • Helpful
        • Nursing: “ because of my training as nurse”
        • Caring: volunteer community health worker
        • Church member
        • Community involvement
        • Business skills
        • Sewing
    • Findings (cont) Relationship affected
      • Relationships within the family
        • When he allowed me to touch him, I knew he is getting better
        • He is cheeky to me
        • When I fell pregnant he started to act strange. He did not want me to breast feed the baby. He said the baby was an animal and must be thrown outside. With all my pregnancies he became ill as if he is jealous of the baby
      • Relationships with others
        • He was fine. We gave him labola to take a wife. She took him away from my house and abused him.
        • He was in court for sexual harassment
        • The neighbour called to say he took her washing from the line
    • Findings (cont) Community life (Feelings and perceptions of the community lived in)
      • Distrust and difficulty in community life:
        • They are bad people
        • They gave the boys drugs
        • They are envious of my house
        • They stole my water reservoir
        • Someone took my doors and windows of my house
        • They cannot help, they cannot do anything
      • Possitive relationship with the community(one participant) as she trained them to accept her brother
        • They know him, they must not give him alcohol or dagga. They will have to answer to me
    • Findings (cont) Practices of Support
      • Support from
        • Church
        • God
        • Hospital
        • Husband
      • No support from:
        • Can’t expect the extended family to help, they have their own problems
    • Findings (cont) Needs and Dreams
      • Community centre to help with care/timeout and housing
        • If we could have a centre where they could stay
        • What will happen to them when I die?
      • Social activities in the community
        • they could have time together to drink tea and eat some cake
      • Vocational/occupational needs
        • they could be busy with something
        • he could do some work
        • he could get a job
      • Safety needs
        • If they could be protected within proper fenced premises
      • Educational needs
        • If he could continue to study
        • If they could go back to school
    • Conclusion: 1. Effect of Mental illness on families living with Severe Mental Illness Person living with Mental Illness MHSU Frustration No work No studies No Partner No dreams Principle care giver Worried Helpless Finacially challenged Tired Crying Unhappy Anger Cheated Close Family Left family home Blaming Stigma Respect Helping with care
    • Conclusion: 2. Burden of Care and family live is embedded in layers of Challenges Family 1. Challenges of Severe Mental Illness 2. Multiple Family Responsibilities 3. Extreme poverty 6.Crime 7. Lack of social support 4. Stigma 5. Drugs & alcohol
    • Conclusion (continue)
      • These findings confirm premises developed by Rojano 18
        • Dysfunctions and mental health problems are commonly seen in the economically deprived ,
        • Socially destitute families are influenced by other variables including
          • Limited access to resources
          • Individual and family underdevelopment
          • Lack of possitive experiences
          • Chronic exposure to stressful environments and
          • Disengagement from civic life
    • References*
      • BANDEIRA M, CALZAVARA MGPC, FREITAS LCF & BARROSO SM (2006): Family Burden Interview Scale for relatives of psychiatric patients (FBIS-BR): reliability study of the Brazilian version. Bras. Psiquiatr. (2006)
      • STEINERT T (2001): Reducing violence in severe mental illness; Community care does not well. British Journal of Psychiatry . 2001, 323(7321): 1080-1081;
      • THOMPSON EH & DOLL W ( 1982): The burden of families coping with the Mentally Ill: an invisible crisis. Family Relations , 1982, 31, 379-388
      • LAZARUS R (2005):Managing de-institutionalisation in a context of change: the case of Gauteng, South Africa. South African Psychiatric Review 2005; 8:65-69.
      • JANSE VAN RENSBURG B (2005 ):Community placement and reintegration of service users from long term mental health care facilities. South African Psychiatry Review 2005;8: 100-103. Loffstadt, Nichol & De Klerk, 2006:231-234
    • References*
      • SCER M (2006): Stigma- the mark of shame. South African Psychiatry Review May 2006: 118
      • KAGEE A & VAN DER MERWE M (2006):Predicting treatment adherence among patients attending primary health care clinics: the utility of the Theory of Planned Behaviour. South African Journal of Psychology, 36(4), 2006:699-7
      • KASIRAM M, PARTAB R & DANO B (2006): HIV/AIDS in Africa; the not so silent presence. Print connection: Durban
      • WHITE M (1998): Re-authoring lives: Interviews and essays. Dulwich Centre Publications, Adelaide. p 228
      • WALKER DK &. CROCKER RW . (1988): "Measuring Family Systems Outcomes." In: H.B. Weiss and F.H. Jacobs, eds. Evaluating Family Programs. New York: Aldine de Gruyter, pp. 153-176.as quoted in http://www.unu.edu/unupress/unupbooks/uu13se/uu13se01.htm#definitions%20of%20the%20family%20and%20its%20functions , entered on 1 May 2007
    • References*
      • MATTESSICH P & HILL R (1987). "Life Cycle and Family Development." In: M.B. Sussman and S.K. Steinmetz, eds. Handbook of Marriage and the Family. New York: Plenum Press, pp. 437-469. as used in http://www.unu.edu/unupress/unupbooks/uu13se/uu13se01.htm#definitions%20of%20the%20family%20and%20its%20functions, entered 1 May 2007
      • CRESWELL J (1994): Research Design. London: Sage. p 227.
      • GILGUN JF, DALY K & HANDEL, K (1992): Qualitative methods in family research. Sage: California. p. 340
      • Burk, C (2005): Comparing qualitative research methodologies for systematic research: the use of grounded theory, discourse analysis and narrative analysis. Journal of Family therapy (2005) 27:237-262
      • DICK, B (2005): Grounded theory: a thumbnail sketch. http://www.scu.edu.au/schools/gcm/ar/arp/grounded.html entered 13/04/2007
      • WIKIPEDIA (2007): Grounded Theory (Glaser). http://en.wikipedia.org/wiki/Grounded_theory_%28Glaser%29 entered 13/04/2007
      • LINCOLN YS & GUBA EG (1985): Naturalistic enquiry. London: Sage.
      • (Szabo: 2006:5).
      • ROJANO R (2004): the practice of community Family therapy. Family Process
      • 1(43), 2004