The aim of this article is to review the literature related to fathers of people who have an intellectual disability (ID). Electronic databases and citation tracking were used to collate data using key terms such as fathers, adults with an ID, learning disability, mental handicap and developmental disability. Relevant articles were analysed and compared for commonality and difference. Eight themes emerged from the literature: response to diagnosis, varied response to ID, concern for the future, work, roles and relationships, impact of fathers upon child development, fathers and service providers, fathers' needs and coping strategies. This review of the literature presents areas of similarity and divergence and highlights the lack of information that relates specifically to fathers of adults. There are clear messages to service providers to support the inclusion of fathers and the need for further research in this area is indicated.
Abstract:The aim of this questionnaire was to explore the existence of future plans, parental expectation and sibling concern regarding people who have a learning disability. A questionnaire was sent via email to siblings of people who have a learning disability. 21 completed questionnaires were returned and responses were anaylsed using descriptive statistics and thematic analysis.A full discussion regarding sibling support was reported to have taken place by 12 (57%) of respondents, 7 (33%) stated this discussion had not taken place and 2 (9%) were unsure. 12 (57%) of participants reported no clear future plan however where a plan did exist, 7 (33%) of respondents claimed it was fully agreeable to both them and their parents. 11 (52%) of respondents reported no difference between their wishes regarding their future role and parental wishes. Key themes generated were; satisfaction with services, parental influence, sibling concern about the future, futures planning, the impact of the disabled person upon sibling lives and siblings needs.Further qualitative exploration into the personal wishes, reality and parental expectations for future support of siblings of adults who have a learning disability is required.Keywords: adult siblings, futures planning, learning disability, parental expectation Abstract word count 1862
Summary15 adult siblings of people who have a learning disability were interviewed in relation to their future wishes and expectations of care giving. Interpretative Phenomenological Analysis (IPA) was used to analyse transcripts from the interviews where it was demonstrated that futures planning remains an area of difficulty for families of learning disabled people. The range and degree of plans in place were variable across the families and overall, plans tended to lack detail and clarity. Various factors were cited as hindrances to the futures planning process such as parental anxiety, difficulty with service providers, superstition, attitude, assumption and life stage. Futures planning presented as a transitional process and further research into how best to support families and individuals who have a learning disability to develop long term yet flexible plans is indicated.
Accessible summary This study looked at where parents think people who have a learning disability may live when parents are not able to give support at home. The study showed that parents were not satisfied with services and that they worry about the future and getting older. Parents feel that supporting a son or daughter who has a learning disability is a difficult job but they want to give support for as long as possible. Parents are worried about what the brothers and sisters of people with a learning disability may have to do in the future. This study is important to people who have a learning disability because parents will not always be here to help. Summary The aim of this qualitative study was to provide an insight into the perceptions of older parents of learning disabled people on the future accommodation needs of their adult children. Semi‐structured interviews were used to seek parental awareness of residential options available, concerns in relation to future accommodation and the preferred accommodation options for their offspring. Four couples who shared the family home with an adult who has a learning disability took part in the study and data were analysed using a step‐by‐step form of content analysis as described by Burnard [Nurse Educ Today11 (1991) 461]. Emergent themes from transcripts were then organized into main categories. The results of this study suggest that older parents are dissatisfied with both statutory and private services, that they have concerns for their nondisabled children and their own ageing. Being a parent to a person who has a learning disability is seen to be a difficult task and yet parents may want to provide support at home for as long a possible. Of the parents who participated in this study, three couples wanted to maintain their adult child at home for as long as possible and the parents who were actively seeking accommodation outside the family home expected to be involved in all aspects of their daughter's care for the long‐term future.
The findings highlight that whilst the impact of intellectual disability upon adult siblings is variable, siblings are concerned about the future, and that life stage and circumstance appear to influence care giving.
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