Article2001

Views and Experiences of People with Intellectual Disabilities and Their Families. (2) The Family Perspective

71 citations0/0 files storedJournal of Applied Research in Intellectual Disabilities

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Family and Disability Support Research Down syndrome and intellectual disability research Family Caregiving in Mental Illness

Abstract

The aim of the present paper is to distil findings from research into the views and experiences of families of people with intellectual disabilities (IDs). It draws from the authors' report on the views and experiences of users and carers, theDoH Research Initiative on Learning Disability: Proposal for a Research Review on the Views and Experiences of Users and Carers, which was commissioned by the Department of Health, and was intended to inform some of the thinking behindValuing Peopleand the associated research programme. The present paper traces the development and scope of research on family carers in relation to the personal and psychological experience of care as well as in relation to receipt of services. Theoretical and methodological gaps in the literature are outlined. Social systems theory is proposed as a means of addressing the requirements of a future research agenda about family care.

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References

1985Stress, appraisal, and coping 1979The Ecology of Human Development 1980The ecology of human development: Experiments by nature and design 1997Positive psychological states and coping with severe stress 1996Understanding Disability 2003Negotiating Family Responsibilities 1998Methods of Life Course Research: Qualitative and Quantitative Approaches 1996Toward a Definition of Family Resilience: Integrating Life‐Span and Family Perspectives

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2004Current Status and Future Directions in Family Caregiving and Aging People with Intellectual Disabilities 2012The changing face of the ‘good mother’: trends in research into families with a child with intellectual disability, and some concerns

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