Search results for ‘Subject term:"learning disabilities"’ Sort:
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Accepting and developing the sexuality of people with mental handicaps: working with parents
- Author:
- ROSE J.
- Journal article citation:
- Mental Handicap, 18(1), March 1990, pp.4-6.
- Publisher:
- British Institute of Mental Handicap
Describes a series of workshops and the parents' feedback.
Letting go : dilemmas for parents whose son or daughter has a mental handicap
- Authors:
- RICHARDSON Ann, RITCHIE Jane
- Publisher:
- Open University Press
- Publication year:
- 1989
- Pagination:
- 96p., bibliog.
- Place of publication:
- Milton Keynes
Describes the views of parents who have an adult mentally handicapped son or daughter about to leave home.
Enhancing the resilience of parents of adults with intellectual disabilities through volunteering: an exploratory study
- Authors:
- WONG Phyllis K.S., FONG K.W., LAM T.L.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 12(1), 2015, pp.20-26.
- Publisher:
- Wiley
In this research, the authors attempted to enhance the resilience level of parents of adults with intellectual disabilities through the parents participation in a volunteer program. The purpose of this study was to investigate the relationships between participation in the volunteer program and the resilience protective factors of parents. A pretest–posttest design was used involving 36 of the participants who were recruited from the 6-month volunteer programme. A 24-item Resilience Measuring Scale developed from the Resilience Scale and the Purpose in Life Test was used to measure the changes in the participants after the intervention. The results showed that the participants achieved positive changes in the protective factors of social resources and meaning of life after joining the volunteer programme. The findings provide initial evidence of the relationship between volunteering and the resilience protective factors for middle- to old-aged Chinese parents. The factors of the programme that facilitated resilience enhancement included using a group format, providing a situation to appreciate problems that others have, and frequent debriefings enabling integration and internalization of the experience. The authors posit some implications on the interventions for this population and make recommendations for further studies. (Edited publisher abstract)
Home and away
- Authors:
- GOODISON Lucy, ARMITAGE Jane
- Journal article citation:
- Social Work Today, 14.11.91, 1991, pp.20-21.
- Publisher:
- British Association of Social Workers
Looks at the crucial role social workers play in supporting families from ethnic minorities with a child with learning difficulties.
Do the professionals understand? Mothers' views of the service needs of families of children with handicaps
- Authors:
- MacLACHLAN M., et al
- Journal article citation:
- Mental Handicap, 15(1), 1987, pp.5-7.
- Publisher:
- British Institute of Mental Handicap
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Experiences of parents who support a family member with intellectual disability and challenging behaviour: “This is what I deal with every single day”
- Authors:
- DREYFUS Shoshana, DOWSE Leanne
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 45(1), 2020, pp.12-22.
- Publisher:
- Taylor and Francis
Background: Research into parents’ experiences of living with a family member with intellectual disability and challenging behaviour does not specifically address what parents say about themselves and their lives. This paper explores “I-statements” parents made about their day-to-day actions in life with their family member. Methods: Semi-structured interviews were conducted with 26 parents, of which 91% were mothers. “I-statements” were analysed using process analysis from systemic functional linguistics and thematic analysis. Results: “I-statements” showed that parents enacted a range of complex and sometimes extreme activities across a variety of life domains. Parents spoke about: managing relationships with services; educating themselves and others; seeking support; resisting poor service delivery; assisting others; and making both small and significant changes. Conclusion: The paper provided insights into the complex lives of these families and offered observations on the implications of the potential misalignment between the supports the data suggests are needed and those that, in reality, are available to them. (Edited publisher abstract)
Meeting the needs of parents in early childhood intervention: the educational partnership with parents-good practice and challenges
- Author:
- PRETIS Manfred
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 8(2), June 2011, pp.73-76.
- Publisher:
- Wiley
There is a general consensus that the effectiveness and efficiency of early childhood intervention (ECI) for children with disabilities is correlated with the active involvement and full participation of parents. This article considers how to improve parent participation in ECI. It considers: the parameters associated with parent participation; why parents should be involved in ECI programmes; the impact of parent participation; and aspects of best practice to increase participation. Parent participation requires a general understanding of each family's needs and desires and specific strategies for determining what each family needs to achieve the outcomes they desire. Studies looking at the effect size of parent participation in ECI programmes shows that the effects vary significantly between different programmes but are in general small. However, a small number of programmes show good effects, and the characteristics of these programmes are discussed. The article highlights the importance of shared understanding and shared decision between professionals and parents as a main predictor of high outcome in ECI.
Employment impact and financial burden for families of children with fragile X syndrome: findings from the National Fragile X Survey
- Authors:
- OUYANG L., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 54(10), October 2010, pp.918-928.
- Publisher:
- Wiley
Fragile X syndrome (FXS) is the most common hereditary cause of intellectual disability but little is known about the employment impact and financial burden experienced by the families of FXS children in the USA. The authors analysed data from the National Fragile X Family Survey for 1019 families with at least one child who had a full FXS mutation. Out-of-pocket expenditures related to FXS were categorised as: medication, therapy, respite care, supervision, genetic testing, development assessment, transportation, recreational needs, and other. Analyses examined the role of insurance, number of affected children, and number of co-occurring conditions in predicting the financial burden and employment impact of FXS, after adjusting for race, education, marital status and other sociodemographic predictors. Overall 47% of the families had experienced an increased financial burden and 62% had had to change work hours or stop work. Families with health insurance that met family needs were significantly less likely to report an excess financial burden. The type of insurance (private or public) was not significant. Affected children's mutation status, especially male children with the full mutation, was associated with employment impact while the number of co-occurring conditions was associated with both financial burden and employment impact. It is concluded that families affected by FXS experience significant employment and financial impacts and that policies designed to help them need to take into consideration the dimension of co-occurring conditions.
Negotiating autonomy within the family: the experiences of young adults with intellectual disabilities
- Authors:
- MILL Aviva, MAYES Rachel, McCONNELL David
- Journal article citation:
- British Journal of Learning Disabilities, 38(3), September 2010, pp.194-200.
- Publisher:
- Wiley
This article explores the transition to adulthood for young people with intellectual disabilities. An exploratory study explored the perspectives of young people with intellectual disabilities on their transition to adulthood, focusing particularly on the process of negotiating autonomy within the family. This study employed a life history approach, involving six young people with mild intellectual disabilities, aged 18-25 years, and two waves of responsive interviews. The first interviews explored participants' life roles, relationships and goals. The second interviews focused on the process of negotiating autonomy within the family. Three approaches to negotiating autonomy within the family were identified: defiant, passive and proactive. The particular approach taken by each participant was associated with the level of congruence between their perceived and desired levels of autonomy and parental support. The study suggests that the transition to adulthood for young people with intellectual disabilities and their parents is not inevitably conflict-ridden. Parents and professionals may support young people with intellectual disabilities through this life stage by including them in family and service decision-making, and by supporting them to take on varied and valued roles and responsibilities within the family and community.
Quality of life of Australian family carers: implications for research, policy and practice
- Authors:
- BURTON-SMITH Rosanne, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 6(3), September 2009, pp.189-198.
- Publisher:
- Wiley
As part of an international, multicentered project, the burden of care, health, and subjective well-being experienced by select Australian family carers supporting a relative with disability at home were investigated. Some 448 family carers residing in New South Wales and Tasmania completed a battery of instruments, including a self-report demographic survey, the Family Caregiver Burden Inventory, the General Health Questionnaire, and the Personal Wellbeing Index. Respondents were predominantly females (mean age = 48 years), married, and supporting a son or daughter with an intellectual disability (mean age = 18 years). Although caring for their family member was not perceived to be a burden, respondents reported notable limitations on their social networks and social activities. They reported higher levels of unemployment than would be expected for the general population and were over represented in lower income groups. They reported seriously low levels of mental health and personal well-being when compared with the general population. The findings revealed that this group of family carers were at high risk of social and economic disadvantage and at high risk of mental health challenges.