Search results for ‘Subject term:"learning disabilities"’ Sort:
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A systematic review of hospital experiences of people with intellectual disability
- Authors:
- IACONO Teresa, et al
- Journal article citation:
- BMC Health Services Research, 14(505), 2014, Online only
- Publisher:
- BioMed Central Ltd
Background: People with intellectual disability are at risk of poor hospital experiences and outcomes. The aims were to conducts a content and quality review of research into the acute hospital experiences of both people with intellectual disabilities and their carers, and to identify research gaps. Method: A systematic search was conducted of primary research between 2009 and 2013 that addressed the experiences of people with learning disabilities and their carers in general acute care hospitals. Quality appraisal tools yielded scores for quantitative and qualitative studies, and overarching themes across studies were sought. Results: Sixteen studies met inclusion criteria. Quality scores were 6/8 for a survey, and 2/11-9/11 (mean =5.25) for qualitative studies/components. Content analysis revealed seven over-arching themes covering individuals fear of hospital encounters, carer responsibilities, and problems with delivery of care in hospitals including staff knowledge, skills and attitudes. Conclusions: The review of eligible papers revealed that despite 20 years of research and government initiatives, people with intellectual disability continue to have poor hospital experiences. The need for research to identify and investigate care at specific points of encounter across a hospital journey (such as admission, diagnostic testing, placement on a ward, and discharge) as well as to include people with a diversity of disabilities is discussed in terms of potential to influence policy and practice across health and disability sectors. (Publisher abstract)
Aging together: sibling carers of adults with intellectual and developmental disabilities
- Authors:
- COYLE Caitlin E., KRAMER John, MUTCHLER Jan E.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 11(4), 2014, pp.302-312.
- Publisher:
- Wiley
Family care provision is the norm for adults with intellectual and developmental disabilities, even as they and their support networks grow older. As families age together, the role of primary carer frequently transitions from the parent to a sibling, as ageing parents die or become too frail to provide continued support. This paper explores the transition in care from the perspective of a sibling who has replaced parents as the primary carer for an individual ageing with intellectual and developmental disabilities . Data are drawn from semi-structured, in-depth interviews with a sample of adults over age 40, living in the United States, and caring for a sibling with intellectual and developmental disabilities (n = 15). Data were analysed using a constant comparative qualitative approach. Results reveal themes impacting the adjustment to the role of primary carer, the extent to which ageing transformed the content of care needs, the importance of planning, and the availability of supplementary support. Findings from this study underscore the need to develop long-term services and supports as well as educational resources that accommodate this population of carers as they age together with their sibling with intellectual and developmental disabilities. (Edited publisher abstract)
'I never thought I would have to do this’: narrative study with siblings-in-law who live together with a family member with a disability
- Authors:
- VANHOUTTEGHEM Inge, et al
- Journal article citation:
- British Journal of Learning Disabilities, 42(4), 2014, pp.315-322.
- Publisher:
- Wiley
Using narrative research, the authors have aimed to gain an insight into the perspectives of 14 siblings-in-law (living in the Flemish part of Belgium) about the decision to live together with a family member who has a learning disability. The decision to live together usually begins with a crisis. However, the decision process is a complex mechanism; it involves dynamics and events within a family (between family members both with and without blood relationships) and is intensified by experiences within a society that holds different views about families and disability. To develop a deeper understanding of this complex process the article considers interpretations based on the contextual framework of Boszormenyi-Nagy. (Edited publisher abstract)
Mothers caring for children and young people with developmental disabilities: intent to work, patterns of participation in paid employment and the experience of workplace flexibility
- Authors:
- CRETTENDEN Angela, WRIGHT AnneMarie, SKINNER Natalie
- Journal article citation:
- Community Work and Family, 17(3), 2014, pp.244-267.
- Publisher:
- Taylor and Francis
The Juggling Work and Care study was a South Australian cross-sectional mail-out and online survey for carers of children and young adults with developmental disabilities aged 0–25 years, which investigated work participation, work-life balance and psychological well-being. The study shows that mothers who were in a couple relationship and primary caregivers for their child (n = 287) were less likely to be in paid employment and worked fewer hours than mothers in the general population, regardless of age of child. Work participation was shown to be strongly related to the severity of child disability. Impacts of caring for mothers were significant. Over a quarter of mothers who had intended to work after the birth of their child had not done so. As well, many mothers who had returned to work reported reduced job opportunities and career progression. Of concern, 9 out of 10 mothers were unaware of their right to request a change in working arrangements to assist them to care. Changes in workplace support for carers, for example, awareness of legislation and flexible leave entitlements, as well as increased community supports such as appropriate and accessible (child)care, could improve the financial and social circumstances of families and result in significant benefits to Australia's economy. (Edited 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)
Caring for a child with learning disabilities: over a prolonged period of time: an exploratory survey on the experiences and health of older parent carers living in Scotland
- Authors:
- CAIRNS Deborah, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(5), 2014, pp.471-480.
- Publisher:
- Wiley
To examine the impacts of a lifetime of caring on older parents of offspring with learning disabilities an exploratory postal survey was completed by 100 older parent carers. The survey including the Medical Outcome Study (Short Form) 36 version 2 (SF-36v2). The reported survey is part of a larger mixed method study including in-depth interviews. The majority of respondents (n = 91) reported caring for 50 h or more per week with multiple caregiving duties. While the SF-36v2 reported physical health of older parent carers to be similar to UK norms, their mental health was significantly reduced. The findings highlight the vulnerability of ageing parents of offspring with learning disabilities. This previously underreported situation warrants further investigation and urgent attention from health and social care agencies and professionals. (Edited publisher abstract)
Exploring coping strategies of carers looking after people with intellectual disabilities and dementia
- Authors:
- PERERA Bhathika D., STANDEN Penny J.
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 8(5), 2014, pp.292-301.
- Publisher:
- Emerald
Purpose: Carers play a vital role in looking after people with intellectual disabilities (ID). Caring role can be stressful and challenging in nature. Carers use various coping strategies to deal with stressors. The purpose of this paper is to explore coping strategies of carers looking after people with ID and dementia. Design/methodology/approach: Qualitative methodology was used to explore coping strategies. Focus groups and face-to-face interviews were carried out. These interviews were transcribed and analysed using thematic analysis. Findings: Nine interviews with carers (six paid carers and three family carers) and two focus groups with nursing staff looking after people with ID were carried out. Three key themes of “Narrative”, “Strategy toolbox” and “Compartmentalisation” emerged from analysis. Narrative and strategy took box were further subthemed. Carers had narratives about them and the person they look after. These “narratives” helped them to deal with day to day stressors. They also carried a “strategy toolbox”, which they used when they were in stressful situations. Compartmentalisation helped them to separate their personal life from work life as a carer. Originality/value: Understanding carers’ coping strategies is important when planning services to help carers who play an important role in our society. Professionals can support carers to understand and improve their existing coping skills and help them to thrive in their role as carers. (Publisher abstract)
The importance of developing confidence and self-esteem in children with a learning disability
- Author:
- GOLENIOWSKA Hayley
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 8(3), 2014, pp.188-191.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to look at the importance of self-esteem in individuals with a learning disability. Design/methodology/approach: The paper explore ways of developing self-esteem and confidence with simple techniques for parents and carers of those with learning disabilities to try. Findings: Anecdotal examples are given by a mother of a child who has Down's Syndrome. The paper outlines ways parents and professionals can increase the self-worth of individuals with a learning disability through fun play, encouraging relevant social and life skills, even safe risk taking. The paper outlines the need for accepting and praising your child for who they are as well as seeking out positive role models. Originality/value: Self-esteem and confidence are crucial ingredients in giving people with learning disabilities a sense of well-being and of beings valued member of a community. They are also key in keeping depression and loneliness at bay. (Publisher abstract)
System-wide information about family carers of adults with intellectual/developmental disabilities: scoping review of the literature
- Authors:
- LUNSKY Yona, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 11(1), 2014, pp.8-18.
- Publisher:
- Wiley
Family carers play an important role supporting individuals with intellectual and developmental disabilities (I/DD) into adulthood. Funders of services often desire this ongoing involvement by family members yet they rarely collect data about family carers. As policy makers and planners are increasingly recognising the need for information related to indicators of system performance, a scoping review was conducted to identify system-wide information needed about family carers of adults with I/DD that would help improve the quality of service provided. A final review of 87 research articles was organised in terms of service use, service need, and permanency planning by family carers of adults with I/DD. Service use and need were associated with the presence of challenging behaviours among individuals with I/DD as well as carer demographics and health status. In addition, carers' subjective view of how well they think they can provide for their child in the future was an important determining factor of service need. Permanency planning was associated with child level of functioning as well as parent income, social support, and compound caregiving demands. Studies highlighted the importance of measuring family carers' mental and physical health and their perceptions of the adequacy of services received. Considered also were methodological limitations, highlighting considerations for future system monitoring. Methodological limitations of studies reviewed include reliance on cross-sectional data, samples consisting of families already receiving at least some services, and little information about the process of seeking and obtaining services. Areas to target in future system monitoring include information on who needs services, what services are needed, families' perceptions of the caregiving experience and families' experiences waiting for services over time. Understanding the experiences of family carers as seekers of formal services can help inform policy and practice. (Publisher abstract)
Emotional and tangible reciprocity in middle- and older-aged carers of adults with intellectual disabilities
- Authors:
- PERKINS Elizabeth A., HALEY William E.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 10(4), 2014, pp.334-344.
- Publisher:
- Wiley
This study investigates whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving. (Edited publisher abstract)