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Parents' definition of effective child disability support services: implications for implementing family-centered practice
- Authors:
- HIEBERT-MURPHY Diane, TRUTE Barry, WRIGHT Alexandra
- Journal article citation:
- Journal of Family Social Work, 14(2), March 2011, pp.144-158.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Family-centred approaches to service delivery are widely advocated in child disability services. This enables interventions to operate within the context of the family, and helps with the assessment of family needs and priorities. This study aimed to further understanding of the factors that facilitate or hinder the process of implementing a family-centred service by examining parents’ experiences within a government programme aiming to advance family-centred principles in its delivery of community-based childhood disability services. Participants were from two health regions within the Province of Manitoba, Canada. Qualitative interviews were conducted with 39 mothers and 22 fathers approximately 18 months after entering the service delivery system. Parents reported that effective service delivery requires service coordinators with interpersonal and practice skills working within an adequately resourced service system that has policies and procedures that are responsive to family needs. Parent feedback was consistent with the principles of family-centred practice and has important implications for the implementation of family-centred services.
The impact of assistive equipment on intimacy and sexual expression
- Author:
- TAYLOR Bridget
- Journal article citation:
- British Journal of Occupational Therapy, 74(9), September 2011, pp.435-442.
- Publisher:
- Sage
Despite the expression of sexuality being an important quality of life domain, it continues to receive scant attention from occupational therapists. The author describes sexuality as a holistic concept that involves more than the sexual act. She conducted conversational interviews with 13 people with motor neurone disease living in England, and 10 of their partners. The aims of the research were to: understand the impact of life limiting illness on the expression of sexuality and intimacy for people with MND and their partners; to understand the meaning of sexuality and intimacy for these individuals; and to identify recommendations for health care practice. The study employed Heideggerian phenomenological principles which value the subjective experiences of individuals and support the view that the researchers subjectivity cannot be set aside but must be accounted for within the analysis. The findings provide evidence for the value of touch in people's lives and shed light upon the impact that assistive equipment has on intimacy, sexual expression and maintaining emotional and physical connection between couples. None of the people interviewed had previously been given the opportunity to discuss these issues with their occupational therapist. The author suggests that there is a place in occupational therapy practice for discussing the value of emotional and physical connection for individuals in the context of any equipment provided.
Not your average childhood: lived experience of children with physical disabilities raised in Bloorview hospital, home and school from 1960 to 1989
- Author:
- ODELL Tracy
- Journal article citation:
- Disability and Society, 26(1), January 2011, pp.49-63.
- Publisher:
- Taylor and Francis
Eight women and eight men with physical disabilities were interviewed to document their recollection of institutionalisation in Toronto’s Bloorview Hospital, Home and School between 1960 and 1989. The author lived at Bloorview from 1965 at age seven, until 1976. The diagnoses of participants included cerebral palsy, spina bifida, muscular dystrophy, and spinal cord injury/paraplegia. Respondents were aged 30 to 50 years; average length of stay in Bloorview was 7 years; the majority resided at Bloorview from age 10 to 18. Generally, those who lived at Bloorview prior to 1975 had a more negative experience and those who lived there after 1975 had a more positive experience. Residents operated a hierarchy among themselves, with those best able to speak and move themselves at the top. They experienced emotional, physical and sexual abuse. Punishment was often carried out in ways that took unfair advantage of their disability. Residents found creative ways to be rebellious. Respondents did not think that the schooling or therapy they got was useful, but felt that friends, family and recreation programs gave them self esteem and a positive future. Respondents, in retrospect, supported an ongoing role for institutions as a resource for technology and for fostering independence.
Disability and social change: private lives and public policies
- Authors:
- SHAH Sonali, PRIESTLY Mark
- Publisher:
- Policy Press
- Publication year:
- 2011
- Pagination:
- 224p.
- Place of publication:
- Bristol
Combining critical policy analysis with biographical accounts, this book provides a socio-historical account of the changing treatment of disabled people in Britain from the 1940s to the present day. It explores how public policies and institutional care have influenced the types of life-choices and the opportunities available to people. It also asks whether life has really changed for disabled people. A key strength of the book is how it uses biographical methods in new and critical ways to examine social and historical change over time. Chapters cover: Policy, history and biography; Telling stories; Keeping it in the family; Living with medicine; Learning about life; and Working for a living. Especially relevant for researchers, students and policy makers.