Family voices: Life for family carers of people with intellectual disability in Ireland.

Darren Chadwick, Hasheem Mannan, Roy McConkey, Edurne Garcia Iriarte, Patricia O'Brien, Freda Finlay, Anne Lawlor, Gerry Harrington

    Research output: Contribution to journalArticle

    Abstract

    Background Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers.Materials and Method This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis. Results Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability ofappropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support.Conclusions Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities todevelop and be part of the community; and carers being shown respect, listened to and involved in decisions.
    LanguageEnglish
    Pages119-132
    JournalJournal of Applied Research in Intellectual Disability
    Volume26
    Issue number2
    Publication statusPublished - 1 Dec 2012

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    Ireland
    disability
    family member
    qualitative method
    respect
    parents
    well-being
    communication
    community
    experience
    Group

    Cite this

    Chadwick, D., Mannan, H., McConkey, R., Iriarte, E. G., O'Brien, P., Finlay, F., ... Harrington, G. (2012). Family voices: Life for family carers of people with intellectual disability in Ireland. Journal of Applied Research in Intellectual Disability, 26(2), 119-132.
    Chadwick, Darren ; Mannan, Hasheem ; McConkey, Roy ; Iriarte, Edurne Garcia ; O'Brien, Patricia ; Finlay, Freda ; Lawlor, Anne ; Harrington, Gerry. / Family voices: Life for family carers of people with intellectual disability in Ireland. In: Journal of Applied Research in Intellectual Disability. 2012 ; Vol. 26, No. 2. pp. 119-132.
    @article{e997e60fa4514d628c2ec12db414d6df,
    title = "Family voices: Life for family carers of people with intellectual disability in Ireland.",
    abstract = "Background Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers.Materials and Method This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis. Results Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability ofappropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support.Conclusions Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities todevelop and be part of the community; and carers being shown respect, listened to and involved in decisions.",
    author = "Darren Chadwick and Hasheem Mannan and Roy McConkey and Iriarte, {Edurne Garcia} and Patricia O'Brien and Freda Finlay and Anne Lawlor and Gerry Harrington",
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    Chadwick, D, Mannan, H, McConkey, R, Iriarte, EG, O'Brien, P, Finlay, F, Lawlor, A & Harrington, G 2012, 'Family voices: Life for family carers of people with intellectual disability in Ireland.', Journal of Applied Research in Intellectual Disability, vol. 26, no. 2, pp. 119-132.

    Family voices: Life for family carers of people with intellectual disability in Ireland. / Chadwick, Darren; Mannan, Hasheem; McConkey, Roy; Iriarte, Edurne Garcia; O'Brien, Patricia; Finlay, Freda; Lawlor, Anne; Harrington, Gerry.

    In: Journal of Applied Research in Intellectual Disability, Vol. 26, No. 2, 01.12.2012, p. 119-132.

    Research output: Contribution to journalArticle

    TY - JOUR

    T1 - Family voices: Life for family carers of people with intellectual disability in Ireland.

    AU - Chadwick, Darren

    AU - Mannan, Hasheem

    AU - McConkey, Roy

    AU - Iriarte, Edurne Garcia

    AU - O'Brien, Patricia

    AU - Finlay, Freda

    AU - Lawlor, Anne

    AU - Harrington, Gerry

    PY - 2012/12/1

    Y1 - 2012/12/1

    N2 - Background Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers.Materials and Method This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis. Results Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability ofappropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support.Conclusions Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities todevelop and be part of the community; and carers being shown respect, listened to and involved in decisions.

    AB - Background Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers.Materials and Method This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis. Results Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability ofappropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support.Conclusions Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities todevelop and be part of the community; and carers being shown respect, listened to and involved in decisions.

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    SN - 1360-2322

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    ER -

    Chadwick D, Mannan H, McConkey R, Iriarte EG, O'Brien P, Finlay F et al. Family voices: Life for family carers of people with intellectual disability in Ireland. Journal of Applied Research in Intellectual Disability. 2012 Dec 1;26(2):119-132.