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‘Shutting the world out’: an interpretative phenomenological analysis exploring the paternal experience of parenting a young adult with a developmental disability
- Authors:
- THACKERAY Lisa A., EATOUGH Virginia
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(Supplement S2), 2018, pp.179-190.
- Publisher:
- Wiley
Background: An in-depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19–32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10). Method: Five fathers participated in semi-structured interviews which were subjected to interpretative phenomenological analysis (Smith, Flowers and Larkin, 2009, Interpretative Phenomenological Analysis: Theory, Method, and Research. London: Sage). Results: The final thematic structure comprises four inter-related themes. They demonstrate a high degree of concern for children's well-being; the joy adult children confers on their father's lives as well as the difficulties men experience in response to the limited opportunities available to their offspring. Importantly findings also illustrate the way in which men struggle to contend with painful emotions. Conclusions: Societal conceptions of masculinity, fatherhood and disability necessarily influence the way fathers experience the world (Yarwood, Fathering, 9, 2011, 150). It is imperative that service providers recognise the particular challenges faced by fathers, seeking ways to better engage and support them. (Edited publisher abstract)
Have your say about college: a report on FE provision for young people with learning disabilities in Somerset
- Authors:
- EVERETT Glyn, WILLLIAMS Val
- Publisher:
- Norah Fry Research Centre
- Publication year:
- 2007
- Pagination:
- 59p., bibliog.
- Place of publication:
- Bristol
This paper reports the findings of a demonstration research study in Somerset about local Further Education (FE) provision for those learners aged 14-25, who have a learning disability and complex needs. The study was commissioned by the Learning and Skills Council South West region (LSC), and took place between May-August 2007. Its aims were to: establish current needs and wishes of young people with a learning disability (aged 14-25) in Somerset; find out to what extent current FE provision meets those needs, both locally and at a distance; document outcomes of FE for students with learning disabilities; strengthen the information base about potential learners in this group; to provide for more joined-up forecasting and communication between the key agencies; and make recommendations for future developments in all these areas. Overall 40 students or young people with 12 learning disabilities, 20 parents and 30 professionals and college staff took part in the research. The findings are discussed in depth and cover such topics as: partnership work, gaps in provision; transition, choice, individual planning, additional support, specialist colleges, social life, and moving on to work.
“It’s ok, mom. I got it!”: exploring the experiences of young adults with intellectual disabilities in a postsecondary program affected by the COVID-19 pandemic from their perspective and their families’ perspective
- Authors:
- SPENCER Patricia, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 25(3), 2021, pp.405-414.
- Publisher:
- Sage
- Place of publication:
- London
Students’ resilience in a postsecondary program for individuals with an intellectual disability impacted by the COVID-19 disruption and the challenges they faced during this time was captured in the context of social network analysis interviews that included students’ and families’ experiences as they managed the pandemic. Students’ experiences spoke to their resilience in using the skills they gained through the program to navigate the COVID-19 disruption even though it was sometimes tricky. Parents’ experiences revealed their increased confidence and sense of pride in their adult children when they observed growth in independence, self-determination, and familiarity with technology. Innovative and engaging instructional practices and e-mentoring support offered by peer mentors motivated students in their academics and encouraged their social development during this time. Student and parent experiences offer hope that young adults with an intellectual disability can gain skills in a postsecondary program that better prepares them to meet life’s challenges. (Edited publisher abstract)
Co-production and pilot of a structured interview using Talking Mats® to survey the television viewing habits and preferences of adults and young people with learning disabilities
- Authors:
- BUNNING Karen, et al
- Journal article citation:
- British Journal of Learning Disabilities, 45(1), 2017, pp.1-11.
- Publisher:
- Wiley
Background: Capturing the views of people with learning disabilities is not straightforward. Talking Mats® has been used successfully to solicit the views of such individuals. The aim was to co-produce an interview schedule using Talking Mats® on the subject of television-viewing habits and preferences of adults and young people with learning disabilities. A secondary aim was to assess the feasibility of the tool prior to a larger scale survey. Materials and Methods: A co-production process was adopted for the development of the Talking Mats ® interview. Ten adults with learning disabilities were recruited as collaborators. Six people participated in an advisory group that met on six occasions. Four supplementary members reviewed the group's work separately. The collaborators generated vocabulary for the tool, selected the most meaningful graphic symbols and reviewed the categories of television programmes. A script to accompany the Talking Mats® procedure was developed and checked for linguistic complexity. The resulting tool was piloted with five participants. The procedure was video recorded and evaluated for procedural effectiveness. Findings: Review of the video recordings from the pilot study revealed that no participant scored below the minimum effectiveness rating of 12. Areas of difficulty that were noted included: time duration of interview, tangibility of symbols and currency of vocabulary. These triggered a number of recommendations for address in the larger scale survey (Publisher abstract)
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.
Transitional services for youth with developmental disabilities: living in college dorms
- Authors:
- KIRKENDALL Abbie, DOUECK Howard J., SALADINO Albert
- Journal article citation:
- Research on Social Work Practice, 19(4), July 2009, pp.434-445.
- Publisher:
- Sage
This study evaluates the impact of a college-based dormitory program on transitioning youth with intellectual disabilities. A qualitative study, with interviews at pre and post, was conducted to evaluate the program's impact. Data were collected with semistructured interviews from young adults with intellectual disabilities who participated in a college-based residential program and their parents or guardians. Three general themes emerged from the data: Participants reported experiences that were (a) typical of normative life transitions, (b) typical of growing pains associated with significant life transitions and learning new skills, and (c) one step forward. Results indicate that the experience of living away from home for the first time was in some ways comparable to that of a typical college student. Improvement in life skills, including increased awareness of personal goals, enhanced vocational goals, increased maturity or assertiveness, was reported. Respondents were generally satisfied with the program.
Perceived benefits and negative impact of challenges encountered in caring for young adults with intellectual disabilities in the transition to adulthood
- Authors:
- RAPANARO Cher, BARTU Anne, LEE Andy H.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 21(1), January 2008, pp.34-47.
- Publisher:
- Wiley
This study investigated the perceived benefits and negative impact associated with stressful events and chronic caregiving demands encountered by parents caring for young adults with an intellectual disability in the period of transition to adulthood. A sample of 119 parents of young adults in Western Australia described these outcomes in a questionnaire, which were then analysed using qualitative content analysis. Although parents identified a range of negative outcomes, they also reported positive outcomes (perceived benefits) in relation to stressful events and chronic demands encountered in this period, including personal growth and enhanced personal resources. The language of stress and burden often used to describe parents’ experiences during the period of their son or daughter's transition to adulthood, needs to coexist with a language of fulfilment, growth and gain, as used by parents themselves. The implications of these findings, in relation to professional interaction with and support of parents in this period, are discussed.
Transitioning to adulthood with a mild intellectual disability - young people's experiences, expectations and aspirations
- Authors:
- SALT Emily, MELVILLE Craig A., JAHODA Andrew
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(4), 2019, pp.901-912.
- Publisher:
- Wiley
Aim: Very little attention has been paid to the views and experiences of young people with mild intellectual disabilities on the broad topics of adulthood and adult identity. The following study was undertaken to explore how young adults with mild intellectual disabilities conceptualize, relate to, and experience the process of transition. Method: Eight young adults with mild to borderline intellectual disabilities participated in semi‐structured interviews. Results were analysed using interpretive thematic analysis. Results: Two umbrella themes were identified: “On a developmental pathway” and “Negotiations in the environment”. Conclusions: The participants concerns were surprisingly similar to those commonly expressed by young adults without disabilities. Self‐perceived adult identity appeared to be affected by the participants' personal definitions of adulthood, as well as by social comparisons with both peers and adults. Finally, while concerns were expressed about their capacity to cope with responsibility, most felt optimistic about adopting full adult status in the future. (Edited publisher abstract)
Comparative life experiences: young adult siblings with and without disabilities' different understandings of their respective life experiences during young adulthood
- Author:
- MELTZER Ariella
- Journal article citation:
- Families, Relationships and Societies, 8(1), 2019, pp.89-104.
- Publisher:
- Policy Press
- Place of publication:
- Bristol
Research shows that siblings of people with disabilities have experiences during young adulthood – such as driving, socialising independently and moving out of home – that they often believe their brothers and sisters with disabilities will not have or will find harder to reach, and that they feel very aware of this comparative difference between them. Less research has, however, explored what siblings with disabilities think of this comparison. This represents a significant gap in the literature. Using accounts from 25 young adult siblings with disabilities and 21 without disabilities, this article compares how both view the comparison of their life experiences during young adulthood, revealing that siblings with disabilities have a more complex, nuanced and multi-faceted range of views about the comparison than their brothers and sisters without disabilities. The findings are discussed in light of the benefits of extending understandings of siblings with disabilities' views, including the benefits for family relations. (Edited publisher abstract)
Young people and friendships: what matters to us?
- Authors:
- BUTLER Vicky, et al
- Publisher:
- CARP Collaborations
- Publication year:
- 2018
- Pagination:
- 41
- Place of publication:
- Swansea
This research involved working with peer researchers to explore patterns of friendships and social isolation with young people with a learning difficulty in transition to adulthood. The research, which was conducted by CARP Collaborations, was funded by The Big Lottery Fund and the Disability Research on Independent Living and Learning (DRILL) programme. The report details findings of qualitative research undertaken across Gwent with 85 young people with learning disabilities, aged between 14- 25 years. The research found that all of the young people participating in the study were at significant risk of social isolation and with almost all did not see friends outside of structured activities or education settings. Additionally, the research participants faced high levels of social segregation with little participation in mainstream community life and few opportunities for paid work and financial inclusion. Two thirds of participants had faced bullying within their transition years. The report makes a series of recommendations, which include reviewing current education outcomes for young people with a learning disability; providing alternative routes to employment such as implementing supported employment models; facilitating friendships within inclusive community settings; and educating non-disabled people about disability and the effects of bullying and hate crime. (Edited publisher abstract)