Search results for ‘Subject term:"learning disabilities"’ Sort:
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Stress and coping in families caring for a child with severe mental handicap: a longitudinal study
- Authors:
- QUINE Lyn, PAHL Jan
- Publisher:
- University of Kent. Institute of Social and Applied Psychology
- Publication year:
- 1989
- Pagination:
- 238p., tables, bibliog.
- Place of publication:
- Canterbury
Second stage in a longitudinal study of 200 families caring for a severely mentally handicapped child,which includes analysis of behaviour problems, contact with professionals and services; and the transition to adult life.
Impact of COVID-19 on the burden of care of families of people with intellectual and developmental disabilities
- Authors:
- NAVAS Patricia, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 35(2), 2022, pp.577-586.
- Publisher:
- Wiley
Aim: This study analysed the impact that COVID-19 and the response measures implemented by the Spanish Government have had on families of individuals with intellectual and developmental disabilities. Method: Data on 323 family members (M = 52.3 years old; SD = 10.5) were collected through an online survey, which was focused on analysing difficulties experienced and service provision during lockdown. Results: Many families (66.3%) have seen their level of stress increased during lockdown because of, among other reasons, a greater burden of care. Difficulties were associated with the closure and changes in disability-related services. Families of people with extensive support needs have generally experienced greater difficulties. Conclusion: Support services should have been considered essential services during lockdown. The failure to receive support has resulted in excessive burden on families, who had to assume a multitude of roles to support their family member with intellectual and developmental disability. (Edited publisher abstract)
The hidden costs of support: experiences of family carers who support someone with learning disabilities
- Authors:
- BLOOD Lauren, COONEY Geraldine
- Publisher:
- National Development Team for Inclusion
- Publication year:
- 2020
- Pagination:
- 32
- Place of publication:
- Bath
Findings from a survey to explore the role and input of family carers, to determine how much time and money family carers typically spend providing support to their relative, and to assess the broader impact on the family carer. The findings show a considerable input from family carers, of both money and time, in the areas of coordinating support, providing practical support, supporting their relative’s health and community involvement. However, there were minimal differences between supported living and residential care and the housing model appeared to have little impact on the amount of support that family carers provided. As expected, family carers whose relative lived at home with them spent significantly more time providing practical support than those whose relative lived outside of the family home. The extensive comments provided by family carers revealed additional impacts on all areas of their lives, beyond time and money. These included impacts on their health, career and relationships. Respondents highlighted that the stress associated with liaising with, and navigating, services on the behalf of their relatives was a huge strain. These difficulties led to family carers having significant anxiety about the future. Parents in particular were worried about who would look after their relative as they age and become incapable of caring, particularly in the event of their death. As they were overseeing and coordinating their relative’s care, there was a fear that support arrangements would fall apart without them. (Edited publisher abstract)
The family caregiving context among adults with disabilities: a review of the research on developmental disabilities, serious mental illness, and traumatic brain injury
- Authors:
- BARRIO Concepcion, HERNANDEZ Mercedes, GAONA Lizeth
- Journal article citation:
- Journal of Family Social Work, 19(4), 2016, pp.328-347.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
A majority of adults with serious disabilities are cared for in the home by family members. Guided by an ecological framework, this article presents the findings of a literature review of research on family caregiving and family support for adults with disabilities. This review included 33 research studies published between 2000 and 2015 focused on three disabilities: developmental disabilities, serious mental illnesses, and traumatic brain injury. A synthesis of the findings underscores the critical role that family caregivers occupy in addressing the needs of their loved one with a disability; however, the needs of the caregiver are insufficiently met by existing service approaches. A better understanding of the unique needs and strengths of the family support context of caregivers and care recipients is needed, giving greater attention to ethnic, racial, and cultural considerations in future research. (Publisher abstract)
‘He's hard work, but he's worth it’. The experience of caregivers of individuals with intellectual disabilities and challenging behaviour: a meta-synthesis of qualitative research
- Authors:
- GRIFFITH G.M., HASTINGS R.P.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(5), 2014, pp.401-419.
- Publisher:
- Wiley
Background: This review synthesises the qualitative literature on the perspectives of those caring for a family member with intellectual disabilities and challenging behaviour, with a focus on their experiences of support services. Materials and Methods: A thorough literature search resulted in 17 studies being selected for inclusion in the meta-synthesis. Results: Five primary themes were identified: (i) love, (ii) altered identity, (iii) crisis management, (iv) support is not just ‘challenging behaviour’ services, and (v) the future: low expectations, high hopes. Conclusions: Carers spoke of the deep love for their family member and of the chronic strain the demands of caregiving placed upon them. Support services often caused additional problems and high levels of stress for caregivers, although there were also reports of good practice. The findings may inform clinicians and service providers about how best to support families of individuals with challenging behaviour. (Edited publisher abstract)
Utilising behavioural family therapy (BFT) to help support the system around a person with intellectual disability and complex mental health needs: a case study
- Authors:
- MARSHALL Keith, FERRIS Jan
- Journal article citation:
- Journal of Intellectual Disabilities, 16(2), June 2012, pp.109-118.
- Publisher:
- Sage
- Place of publication:
- London
Family members and staff who provide support to people with intellectual disabilities with mental health difficulties are more likely to experience increased stress. Previous research has demonstrated that psycho-educational family interventions have a positive impact on the person with mental health difficulties and on the family members who support them. This article uses a case study to illustrate the implementation of a family intervention with the support system around ‘George’, a 45 year old man with mild intellectual disabilities and diagnoses of schizophrenia and autism. Following behavioural family therapy, which encourages service users to take the lead in discussions about how their illness affects them and their family, the family members reported a decrease in levels of strain. Both the family and team members reported improvement in functioning within the support system. The authors concluded that the family based intervention was a cost-effective way of building resilience and reducing stress.
Respite care as a community care service: factors associated with the effects on family carers of adults with intellectual disability in Taiwan
- Authors:
- CHOU Yueh-Ching, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 33(1), March 2008, pp.12-21.
- Publisher:
- Taylor and Francis
This study examines the effects and associated factors of respite care, which was legislated as a community service for adults with an intellectual disability (ID) in Taiwan in 1997. A total of 116 family carers who live with an adult with ID and have utilised the respite care program were surveyed using standardised measures. The results suggest that the most notable effects of respite care include improvement in the carers' social support and life satisfaction, and relief of psychological stress and overall burden of care. The factors associated with these effects include the way the participants have used the respite care and the users' individual characteristics. How families used the respite care, whether the carers practised a religion, and where the families resided, were the most significant factors in determining the effectiveness of the respite. Suggestions are made for making access to information about the program more widely available, and for extending the availability and duration of the service.
Family subtyping and early intervention
- Authors:
- MARGALIT Malka, AL-YAGON Michal, KLEITMAN Talia
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 3(1), March 2006, pp.33-41.
- Publisher:
- Wiley
The goal of the study was to identify and differentiate subgroups among mothers whose infants were diagnosed as having a developmental disability. The sample consisted of 80 mothers from intact families in Israel whose infants had such diagnoses, most of whom were diagnosed with Down syndrome. All mothers were receiving early intervention services. Acknowledging the mothers' heterogeneous reactions to their situation, the study attempted to identify discrete family profiles, based on mothers' sense of coherence as a measure of personal strength and family cohesion as a measure of systemic support. Four family subtypes were identified. The authors examined experiences of stress, coping, and affect among these subgroups. Significant differences emerged among these four subgroups in mothers' stress experience, as well as their negative and positive moods. Relations between mothers' strengths and their needs are discussed as related to the early intervention program.
Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability
- Authors:
- OELOFSEN Natius, RICHARDSON Phil
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 31(1), March 2006, pp.1-12.
- Publisher:
- Taylor and Francis
Few previous studies have examined Antonovsky's sense of coherence (SOC) in parents of young children with developmental disability (DD). This study explored relationships between parental stress, SOC, social support, and health in parents of preschool children with and without DD. A secondary aim was to explore the relevance of the SOC construct to parental adjustment. Data were analysed from 59 families with preschool children with DD and 45 families of typically developing preschoolers (children without DD) who completed the study questionnaire. Mothers and fathers of children with DD reported high levels of parenting stress, with 84% of mothers' and 67% of fathers' scores falling within the clinical range. Parents of children with DD consistently reported higher levels of parenting stress, weaker SOC, and, for mothers and parents in 2-parent families, poorer health than parents of children without DD. Within families, mothers of children with DD reported poorer health, higher levels of parenting stress, and weaker SOC than their partners. There were no significant differences in reported health, parenting stress, or SOC between parents of children without DD. The results supported previous findings on high levels of parental stress in parents of preschool children with DD. The weaker SOC of parents of children with DD is likely to be an indication of the pervasive impact on parents of their child's DD. These findings also indicated possible gender differences in parental adjustment to their child's DD. Overall, the findings of this study support the usefulness of SOC theory in understanding adaptation in parents of children with DD.
Views and experiences of people with intellectual disabilities and their families: (2) the family perspective
- Authors:
- GRANT Gordon, RAMCHARAN Paul
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 14(4), 2001, pp.364-380.
- Publisher:
- Wiley
Examines findings from research into the views and experiences of families of people with intellectual disabilities (IDs). It draws from the authors' report on the views and experiences of users and carers, the DoH Research Initiative on Learning Disability: Proposal for a Research Review on the Views and Experiences of Users and Carers, which was commissioned by the Department of Health, and was intended to inform some of the thinking behind Valuing People and the associated research programme. This article traces the development and scope of research on family carers in relation to the personal and psychological experience of care as well as in relation to receipt of services. Theoretical and methodological gaps in the literature are outlined. Social systems theory is proposed as a means of addressing the requirements of a future research agenda about family care.