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"She'll be able to live independently...as long as I’m around”: The “lived" experience of parenting a child with 22q11.2 deletion syndrome in the transition to adulthood
- Authors:
- GOODWIN Jane, SWABB Linda, CAMPBELL Linda E.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 33(3), 2020, pp.565-573.
- Publisher:
- Wiley
Background: 22q11.2 deletion syndrome (22q11DS) is the most common microdeletion syndrome. Parents of emerging adults with 22q11DS have an intense and ongoing involvement in their child's life. This study explores the lived experience of parents in relation to their child becoming independent and establishing intimate relationships. Method: Interpretative phenomenological analysis was used to explore the positive and negative experiences of five parents of emerging adults with 22q11DS. Results: Supervised independence overarched four subordinate themes. These themes highlighted the difficulties experienced by parents attempting to relinquish control whilst still experiencing a need to keep their child safe as their child negotiated a complex stage of life. Parents waited for “signs” from their child before initiating conversations about intimate relationships. Conclusions: These findings provide insight into the lived experience of parenting a child through the transition into adulthood, providing a catalyst for further research with the aim of facilitating better services for families. (Edited publisher abstract)
Loving each other safely
- Authors:
- HOLLINS Shelia, BAILEY Helen, UPTON Jason
- Publisher:
- RCPsych Publications
- Publication year:
- 2011
- Pagination:
- 66p.
- Place of publication:
- London
One of the Books Beyond Words series, this book aims to help young men with learning disabilities understand their own sexuality, choose what to do in a steady relationship and know how to stay healthy. The book has advice on safer sex and a list of resources and places to go for help. It uses pictures to tell the story of Ed as he gets a girlfriend and the of advice he needs they grow closer and decide they want to have sex.
Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives
- Authors:
- HEALY E., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 53(11), November 2009, pp.905-912.
- Publisher:
- Wiley
Despite philosophical shifts towards person centred care and the consequent recognition of sexual autonomy for people with an intellectual disability (ID), there continue to be social and cultural barriers to sexual expression. This first part of a two-part study assessed the sexual knowledge, experiences and aspirations of service users. It also looked at their perceptions of impediments to achieving sexual autonomy. Thirty-two participants (20 male, 12 female) attending an ID service in Ireland participated in focus groups delineated by gender and banded by age group (13–17 years; 18–30 years; 31+ years). Service users, especially those over the age of 18 years, seemed to have an understanding of their sexual rights and identified some social and cultural barriers that they felt prevent them from achieving sexual autonomy. Most wanted a relationship. Those under 18 years had only rudimentary knowledge of sexuality issues, for example pregnancy, but had similar friendship and marriage aspirations to the older group. Family and staff attitudes appeared to be very influential in the views of respondents. All service users had received some form of sex education, although the benefits seemed greatest for those over 18 years. The authors stress the importance of sex education training and promotion of positive attitudes among staff carers and families towards appropriate sexual expression.
Transition staff discuss sex education and support for young men and women with intellectual and developmental disability
- Authors:
- WILSON Nathan J., FRAWLEY Patsie
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(3), 2016, pp.209-221.
- Publisher:
- Taylor and Francis
Background: Young people with intellectual and developmental disability (IDD) get information, education, and support about social and sexual relationships from different sources. Staff are often involved in providing this education and support. The authors explored if and how this support is offered to young people transitioning to adulthood. Methods: Focus groups were conducted with 17 staff from 3 transition services to illicit information about their experiences providing this education and support. Findings: A key theme was that staff are “reluctant counsellors.” Although staff provided social and sexual education, they reported being underprepared and relied primarily on their own values as guidance. They did this in full recognition that transition services filled a social gap for participants, blurring the lines between education and social support. Conclusion: Further research is needed to inform sexuality and relationship policy and practice during transition to adulthood, as this is a key learning and developmental time for young adults with IDD. (Edited publisher abstract)
Sexuality and learning disabilities: a handbook
- Editors:
- McCARTHY Michelle, THOMPSON David, (eds.)
- Publisher:
- Pavilion
- Publication year:
- 2010
- Pagination:
- 171p.
- Place of publication:
- Brighton
The aim of this book is to serve as a guide for those who may be inexperienced in supporting people with learning disabilities with sexual issues. A number of authors share their direct experience and provide ideas on helping people with learning disabilities to find out about their bodies and sex. The focus is on what staff and family members can do themselves, but the writers also recommend specialist help where appropriate. The book is presented in a clear and accessible format, case examples are provided and chapters summarised in key points. Ideas for further reading and specialist organisations are included. Topics covered include; the law, masturbation, menstruation and menopause, profound learning disabilities, sexual opportunities, same sex and opposite sex relationships, pregnancy, sexual abuse, unacceptable sexual behaviour, and sex education.
Sexuality and personal relationships for people with an intellectual disability. Part II: staff and family carer perspectives
- Authors:
- EVANS D. S., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 53(11), November 2009, pp.913-921.
- Publisher:
- Wiley
There appears to be little evidence that current service provision is matching recent ideological shifts that encourage appropriate sexual expression for people with an intellectual disability (ID). This second of a two part study used a questionnaire to assess the attitudes of staff and family carers. Case scenarios were presented to parents or siblings (n = 155) and staff carers (n = 153) of people with an ID in the west of Ireland; most were female. Staff carers tended to be more open to discussing sexuality and relationships with service users compared to family carers. They also suggested more environmental (e.g. insufficient training) than service-user characteristics (e.g. low cognitive ability) as impediments to these discussions. There were significant attitudinal differences between staff and family carers and between younger and older carers. Staff carers were more likely to support service-user engagement in intimate and non-intimate relationships whereas the majority of family carers (80%) showed a preference for low levels of intimacy. Overall the attitudes of staff carers more closely matched those promoted by ideological developments but differences in attitudes between carer groups could lead to inconsistent approaches to the management of sexuality. The authors conclude that there is continued need to provide staff and family carers with opportunities for dialogue and an ongoing need for training in the area of sexuality.
The project: sex and relationships
- Author:
- GARBUTT Ruth
- Journal article citation:
- Learning Disability Today, 9(4), June 2009, pp.30-32.
- Publisher:
- Pavilion
- Place of publication:
- Hove
This article reports on a project to improve sex and relationship education for people with learning disabilities. The project was run by CHANGE, a national organisation that fights for the rights of people with learning disabilities, in association with Leeds University. Research tasks included: interviews with parents of young people with learning disabilities; focus groups with teachers and governors; a national survey of special schools; weekly drama sessions with young people over a two year period. Key findings were that there is a lack of accessible information for young people with learning disabilities. Parents had not been provided with information to support them in tackling the issue. Schools and parents are not working well together on sex education. Teachers do not know where to get relevant resources and many lack confidence in the issue. The article concludes with a number of recommendations for young people, parents and professionals.