Search results for ‘Subject term:"learning disabilities"’ Sort:
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Family fall-outs and how to avoid them
- Author:
- SCOWN Steve
- Journal article citation:
- Learning Disability Today, April 2010, pp.26-27.
- Publisher:
- Pavilion
- Place of publication:
- Hove
The families of people with learning disabilities and autism often complain of feeling unimportant and left out when service providers get involved. Their impression can be that important decisions are made without their involvement, and that all their years of love and intimate knowledge go unnoticed and unheard. Professionals have as their priority the well-being of the person at the centre, not their family, and may even see the parents and families as meddlers. This article argues that most family members are just trying to do the best for their relative, and that most people with learning disabilities will benefit from having their family actively involved in their lives and forming an integral part of their support team. The article discusses the challenges of how to develop a family-friendly approach which involves a cultural shift in services and different ways of working with families, and also the need to adapt to the changing social market that personalised support has introduced and proactively engage with families. It describes a family reference group, Forward with Families, set up by the support provider Dimensions, in order to assist in developing and implementing a whole organisational approach.
Contrasting perspectives of parents and service providers on respite care in Queensland, Australia
- Authors:
- TEO Cynthia, KENNEDY-BEHR Ann, LOWE John
- Journal article citation:
- Disability and Society, 33(9), 2018, pp.1503-1527.
- Publisher:
- Taylor and Francis
Parent-carers need support to continue to care for their child with significant disability in their home. There has, however, been little evidence that respite interventions have consistent or enduring beneficial effects on carer well-being. This article reports the findings of a qualitative study which adopted an Appreciative Inquiry philosophy to interview parent-carers of children with significant intellectual and/or developmental disabilities on how formal support services have helped them maintain their health and well-being, and disability support staff on how they help such parent-carers foster their health and well-being. We conclude that better communication and collaboration between service providers and users, more targeted training of workers, and embracing a person-centred and family-centred approach to respite services are needed. In addition, clearer definition and communication of the scope of respite services are required to best support families of children with significant disability in their home. (Edited publisher abstract)
The impact of four family support programmes for people with a disability in Ireland
- Authors:
- DALY Louise, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 19(1), 2015, pp.34-50.
- Publisher:
- Sage
- Place of publication:
- London
Background: This article reports on an evaluation of four family support programmes in Ireland for families of people with a physical or an intellectual disability or autism. The focus of the evaluation, which took place within a year of the programmes’ completion, was on establishing whether the programmes had an impact on families’ capacity to effectively support their family member. Method: A mixed-method design was used, which included a survey (n = 38) and interviews (n = 19) with participating family members. Ethical approval for the study was given by the relevant university ethics committee. Results: Findings suggest that participation in the programmes enhanced knowledge, attitudes, and competencies of families and also impacted their ability to advocate for their family member and to connect with the community. Discussion and conclusions: Whilst outcomes were overwhelmingly positive, further follow-up would be required to ascertain if sustained capacity building took place. (Publisher abstract)
Internet use for family carers of people with intellectual disabilities: a literature review and thematic synthesis
- Authors:
- CATON Sue, KOIVUNEN Emma-Reetta, ALLISON Callum
- Journal article citation:
- Journal of Intellectual Disabilities, 23(3), 2019, pp.446-468.
- Publisher:
- Sage
- Place of publication:
- London
Being a family carer can be rewarding but can also lead to mental and physical exhaustion as well as feelings of social exclusion and isolation. Research has shown that the use of the Internet and online forums can provide an immediate place to find information and reassurance and that forum use can be an empathetic place to share experiences and seek emotional support. This article details a systematic literature search of research on carers of people with intellectual disabilities and/or autism using the Internet. A thematic synthesis of the resulting papers identified that online forums give carers a sense of agency by providing a place to go for informational support that may not be elsewhere. Carers also enjoyed the safe community of solidarity and emotional support that online forums provide. An important finding is the lack of published papers in this area with the inclusion of just eight papers. (Edited publisher abstract)
Commentary on “The sibling’s perspective: experiences of having a sibling with a learning disability and behaviour described as challenging”
- Author:
- KASSA Clare
- Journal article citation:
- Tizard Learning Disability Review, 24(3), 2019, pp.147-150.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to provide a commentary on the article by Chase and McGill from the perspective of Sibs, the only UK-wide charity dedicated to supporting siblings of disabled children and adults. Design/methodology/approach This commentary explores the implication of Chase and McGill’s findings for sibling support. Findings: The article highlights how siblings need greater support throughout their life and argues that their views must influence the provision and development of that support. Originality/value: This viewpoint focuses on the needs of adult siblings, often a forgotten group facing unique challenges and shared experiences. (Edited publisher abstract)
The sibling’s perspective: experiences of having a sibling with a learning disability and behaviour described as challenging Jennifer Chase
- Authors:
- CHASE Jennifer, McGILL Peter
- Journal article citation:
- Tizard Learning Disability Review, 24(3), 2019, pp.138-146.
- Publisher:
- Emerald
Purpose: Siblings of individuals with disabilities provide the most long-term care for an individual with disabilities, yet research on their experiences is limited. A majority of previous research focuses on young siblings from a parent’s viewpoint. The purpose of this paper is to investigate the effects of having a sibling with a disability and behaviour described as challenging from adult siblings’ perspectives. Design/methodology/approach: Six adult siblings of individuals with intellectual disabilities and behaviour described as challenging were interviewed about their responsibilities pertaining to their sibling, family relationships and the support that had been provided. The study used semi-structured interview methodology based on interview questions from previous research. Findings: Siblings described a multifaceted impact on their lives. They attributed aspects of their career choices, personal characteristics and family dynamics to having a sibling with a disability and behaviour that challenges. Siblings stressed the inadequate support that they have received throughout their lives. They are, in a sense, the invisible carers for their sibling but they are perceived by society as just a sibling. Siblings described an optimistic perspective on their lives, even though they expressed the difficulties that they have faced. Research limitations/implications: Due to the recruitment process and limited demographic of the participants, the findings may not be generalisable to the general population of siblings of individuals with disabilities. Further research should focus on a broader population. Practical implications: This study reinforces the need for more support for siblings of individuals with disabilities in childhood and in adulthood. Originality/value: This paper provides perspectives of individuals that have not been fully represented in previous research. (Edited publisher abstract)
Impact of challenging behaviour on siblings of people with autism
- Authors:
- YACOUB Evan, et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 12(5-6), 2018, pp.145-152.
- Publisher:
- Emerald
Purpose: Despite being largely supportive of their sibling with an autism spectrum disorder (ASD), some siblings without ASD also feel the effects of the disorder particularly in relation to challenging behaviour and lack of empathy. The purpose of this paper is to explore the experiences adults who have a sibling with ASD and intellectual disability (ID) with challenging behaviour. Design/methodology/approach: Interviews were conducted with 11 capacitous adult siblings of service users who have ASD and ID as well as a history of challenging behaviour. A modified version of the autism Parenting Stress Index was used to assess the impact on those siblings. thematic analysis was utilised to analyse their responses. Findings: Four main themes emerged from the interviews, which highlighted that challenging behaviour can cause emotional losses and can impact upbringing and the sibling relationship. Despite the siblings making adjustments, they continue to have concerns for the future. Originality/value: Chronic challenging behaviour can impact on siblings, and it is important to support entire families, and not exclusively parents. (Edited publisher abstract)
Parental perceptions and satisfaction with family services in families of children with autism spectrum disorder and other developmental disabilities
- Authors:
- ZUNA Nina I., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(3), 2016, pp.233-242.
- Publisher:
- Taylor and Francis
Background: This paper reports results from a study examining disability-related services at the family level. Method: The authors used descriptive statistics to examine (a) the types of disability-related family services families used, (b) how well family services met their needs, (c) the types of family services needed but not received, and (d) families’ perceptions of their knowledge of disability-related family services. Results: Families were mostly satisfied with the services they received; however, about 25% of the sample indicated that a few family services, such as respite, sibling support groups, and parent support groups, were needed but not received. Families were also slightly less satisfied with their knowledge of family services as compared to their ability to request services. Conclusions: Families identified specific services to meet the needs of all of their family members; however, their family support needs are not always being adequately addressed by current programmes. Initial assessments should be used to match family services to family needs, and follow-up consultations would help to ensure that the services received result in improved family quality of life. (Edited publisher abstract)
When satisfaction is not directly related to the support services received: understanding parents' varied experiences with specialised services for children with developmental disabilities
- Authors:
- ROBERT Marie, LEBLANC Line, BOYER Thierry
- Journal article citation:
- British Journal of Learning Disabilities, 43(3), 2015, pp.168-177.
- Publisher:
- Wiley
Parents of children with autism or intellectual disabilities are more susceptible to stress and have a greater burden of adversity than other parents. Their well-being and satisfaction greatly depend on the system's response of finding them formal support and the help they need. This study proposes an interpretive approach, based on 15 parents' experiences, to find and understand the strengths and weaknesses of specialised support services. The research also aims to obtain data on parents' experiences in order to identify the conditions and the perceptions on which feeling satisfaction or dissatisfaction is based. The situations that were considered positive are all directly related to the professional concrete support parents say they received (e.g. ‘working with’ their child to improve communication with him or her, understanding his or her issues, and managing difficult behaviours). However, the overall experience of each parent has either a dominant positive or a dominant negative connotation. The parents' satisfaction or dissatisfaction appears to be constructed from two criteria: (i) whether parents see themselves as experts or non-experts on the situation of their child and (ii) parents' opinions on the purpose or goal of the intervention or of the services they received. (Edited publisher abstract)
‘My brother likes meeting new people, but don't ask him any direct questions’: involving adults with autism plus learning disability in a qualitative research project
- Authors:
- TOZER Rosemary, ATKIN Karl, WENHAM Aniela
- Journal article citation:
- British Journal of Learning Disabilities, 42(4), 2014, pp.292-300.
- Publisher:
- Wiley
People who have difficulties in communication and understanding are often excluded from research which is about them. As part of a qualitative study focusing on the adult siblings of people with autism and learning disabilities, the authors met twelve people with autism plus severe learning disability with their brother or sister. Individually tailored resources were used to make the meeting accessible and positive. Sibling involvement was essential to the participation, and inclusion of adults with autism plus learning disability strengthened the research findings, making them more valid and more relevant to policy and practice. This article describes the authors experiences of facilitating this involvement, the methods used and understandings gained, with the aim of encouraging practitioners and researchers to do likewise. Meeting the brothers and sisters with autism was important as it helped the researchers understand their relationships much better and make suggestions about how they and their siblings could be better supported. (Edited publisher abstract)