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A comparative study of stress and unmet needs in carers of South Asian and white adults with learning disabilities
- Authors:
- DEVAPRIAM John, et al
- Journal article citation:
- Ethnicity and Inequalities in Health and Social Care, 1(2), December 2008, pp.35-43.
- Publisher:
- Emerald
A sample of 742 informal carers was selected from the Leicestershire Learning Disability Register. Data on carers' and subjects' demographic details, stress levels and unmet service needs were analysed and compared using chi-square tests and logistic regression analyses. Substantial differences were observed between the two groups. Carers of South Asian adults with learning disabilities reported significantly higher levels of care provision and unmet needs. Major stress was reported in 23% of carers. This was more common in carers with poor health, in those caring for younger adults, carers of adults with psychological symptoms, and in those with an expressed need for moral support or respite care. Stress is common among informal carers of adults with learning disabilities and inequalities, in reported care given and unmet needs, exist between carers of South Asian and white adults. Practitioners need to be aware of factors associated with stress when assessing carers in this population.
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.
Staff morale in day care centres for adults with intellectual disabilities
- Author:
- MASCHA Katerina
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 20(3), May 2007, pp.191-199.
- Publisher:
- Wiley
Levels of burnout, job satisfaction and intended turnover of staff working in day care centres for adults with intellectual disabilities are investigated in relation to role clarity, staff support and supervision, and coping strategies used by staff. Thirty six direct-care staff of four day care centres in the West Midlands UK were administered the Maslach Burnout Inventory, The Staff Support Questionnaire (SSQ), and The Shortened Ways of Coping (Revised) Questionnaire (SWC-R). Although staff reported high levels of job satisfaction, they experienced moderate degrees of emotional exhaustion and personal accomplishment and reported a high propensity to leave the service. Factors identified as relating to staff morale were staff support and supervision, role clarity, wishful thinking, staff cooperation, and other practical issues regarding the day-to-day running of the service. Staff in day care services for people with intellectual disabilities experience similar stressors to those experienced by staff in residential facilities with the informal culture of the service being of most importance to staff morale. Suggestions for the enhancement of staff morale are provided.
Physical and psychological health of family carers co-residing with an adult relative with an intellectual disability
- Authors:
- GREY Jillian M., TOTSIKA Vasiliki, HASTINGS Richard P.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(Supplement S2), 2018, pp.191-202.
- Publisher:
- Wiley
Background: Providing long-term care to an adult relative with intellectual disability can impact negatively on caregivers’ health and well-being. Methods: Data were collected via online and postal questionnaires on 110 family carers’ physical and psychological health, family stress and perceived positive gains from caring. Psychological adaptation and carers’ satisfaction with available support were also examined. Results: Study participants reported more health problems than general populations. Higher support needs of care recipients were associated with increased family stress. Carers being female were associated with lower family stress. Older age and better socio-economic position were associated with better psychological outcomes. Other associations were consistent with psychological adaption and perceived helpfulness of support buffering negative outcomes and facilitating positive gains from caring. Conclusions: Family carers of adults with intellectual disability appear to experience poorer health outcome than population norms. Adaption to the caregiving role may buffer negative outcomes. Further large scale, population-based, longitudinal research is needed. (Publisher abstract)
Associations between behaviours that challenge in adults with intellectual disability, parental perceptions and parental mental health
- Authors:
- WAITE Jane, et al
- Journal article citation:
- British Journal of Clinical Psychology, 56(4), 2017, pp.408-430.
- Publisher:
- Wiley
Objectives: This study examined parental perceptions of behaviours that challenge (CB) in their adult children with intellectual disability (ID), and explored whether perceptions mediated associations between CB and parental psychological distress. Design: A within-group correlational design was employed. Methods: Sixty-five parents reported on individuals with genetic syndromes and ID who had chronic CB. Parents completed the Illness Perception Questionnaire-Revised (IPQ-R) adapted to measure perceptions of self-injury, aggression or property destruction, alongside assessments of parental locus of control, attributions about behaviour, parental psychological distress, and CB. Results: A high proportion of parents evidenced anxiety and depression at clinically significant levels (56.9% and 30.8%, respectively). Contrary to predictions, psychological distress was not significantly associated with CB. The perception that the adult with ID exerted control over the parent's life mediated the association between CB and parental psychological distress. Few parents endorsed operant reinforcement as a cause of CB (< 10%). Conclusions: The high levels of psychological distress in parents is notable and of concern. Further research should consider the reasons why parents have causal attributions that might be inconsistent with contemporary interventions. Practitioner points: 1) Parents experience high levels of psychological distress while supporting adults with ID who engage in chronic behaviours that challenge; 2) A stronger belief that the adult with ID exerts control over the parent's life may mediate an association between CB exhibited by the individual with ID and parental psychological distress; 3) Few parents endorsed operant reinforcement as a cause of behaviours that challenge. (Publisher abstract)
Informal support and burden among parents of adults with intellectual and/or developmental disabilities
- Authors:
- ROBINSON Suzanne, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(4), 2016, p.356–365.
- Publisher:
- Wiley
Background: Parents often play a lifelong role in supporting their sons and daughters with intellectual and/or developmental disabilities (IDD). There is a need to better understand parent resources, particularly when the individual with IDD has behaviour problems, as the latter has consistently been linked to parental burden. Methods: The current study aimed to investigate the relationship between the behaviour support needs of 212 adults with IDD and parental burden, and whether perceived helpfulness of informal supports moderated this relationship. The helpfulness of individual sources of informal support was also explored. Results: Informal support was negatively related to burden, although it did not act as a moderator. Individual sources varied in terms of how they were related to burden, but none acted as moderators. Conclusions: Although informal social support appears to be important to parents and may help alleviate burden, it does not appear to act as a moderator as anticipated. (Publisher abstract)
Elderly mothers of adult children with intellectual disability: an exploration of a stress process model for caregiving satisfaction
- Authors:
- KIM Go-en, CHUNG Soondool
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(2), 2016, pp.160-171.
- Publisher:
- Wiley
Background: This study examines the utility of Pearlin's caregiving stress model for understanding the caregiving satisfaction of elderly mothers of adult children with intellectual disability. Methods: Mothers living in Seoul, Kyonggi, and Incheon who were 55 years of age or older and providing care for adult children with intellectual disability aged 18 or above were selected purposively from community rehabilitation centre users. A total of 392 participants responded to the survey. The structural equation modelling method was used to evaluate the suitability of the stress process model and to test the hypotheses. Results: The stress model proved to be a good fit to the data. The results showed that a mediating variable – a problem-centred coping strategy – transmitted the effect of stress variables such as recognition of ageing, establishment of permanency planning, and worries about the future on caregiving satisfaction. The relationship of adult children with intellectual disability also transmitted the effect of establishment of permanency planning on caregiving satisfaction. However, an indirect effect of an emotion-centred coping strategy was not shown. Conclusions: The findings of this study shed light on the development of intervention strategies for elderly mothers who provide care permanently to adult children with intellectual disabilities. (Publisher abstract)
‘How long are we able to go on?’ Issues faced by older family caregivers of adults with disabilities
- Authors:
- DILLENBURGER Karola, MCKERR Lyn
- Journal article citation:
- British Journal of Learning Disabilities, 39(1), March 2011, pp.29-38.
- Publisher:
- Wiley
As the population ages, the number of older carers of disabled children rises accordingly. This paper reports findings from a study of parents/carers of disabled children asking them about relationships, social support and future planning. These carers are often under a lot of stress because of failing health, financial pressures, bereavement and worry about the future of their sons/daughters. Participants included 29 older parents/cares of 27 adults with intellectual and/or developmental disabilities. They were interviewed to investigate their views and experiences regarding long-term care and service arrangements, health and psychological needs and future planning. Results revealed a serious lack of support, respite care and future planning which caused high stress levels for caregivers. The authors concluded that policy makers and researchers working in this should take into consideration the needs of older caregivers when making future plans for adults with disabilities.
Older carers and adults with learning disabilities; stress and reciprocal care
- Author:
- GANT Valerie
- Journal article citation:
- Mental Health and Learning Disabilities Research and Practice, 7(2), Autumn 2010, pp.160-172.
- Publisher:
- South West Yorkshire Mental Health NHS Trust and University of Huddersfield
This paper presents some of the findings from a qualitative study which explored the perceptions of stress and experiences of the longevity of care giving of older carers of adults with learning disabilities together with the views of people with learning disabilities about their relationship with their parents. Twenty four adults over the age of 60 who were carers for adults with learning disabilities living in the community were interviewed and 14 adults with learning disabilities who lived with carers older than 60 participated in focus groups. Five major themes emerged from the interviews with carers: a high degree of stress; how much their lives revolved around their child; support given to them by the adult with learning disability; reluctance to use respite services, linked to their previous experiences; not defining themselves as carers, instead viewing their parenting role as a permanent one. Major themes that emerged from the focus groups were: a high level of concern regarding their parents; the amount of practical and emotional support they gave to their parents; restriction placed on their lives, either by their parents or self-imposed so their parents would not be left on their own; lack of planning for the future; lack of knowledge regarding their available options. The author comments that the findings show that there is often co-caring between the older carer and their relative with a learning disability, and that the amount and quality of mutual caring is frequently overlooked by service providers and professionals.
Validation of the Subjective and Objective Family Burden Interview (SOFBI/ECFOS) in primary caregivers to adults with intellectual disabilities living in the community
- Authors:
- MARTORELL A., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 51(11), November 2007, pp.892-890.
- Publisher:
- Wiley
There is little information on the psychometric properties of instruments for assessing family care burden in adults with intellectual disabilities (ID). This study aimed to analyse the usefulness of the ‘Subjective and Objective Family Burden Interview’ (SOFBI) in the assessment of principal caregivers in Spain. The SOFBI was administered to 166 principal caregivers of adults with ID in a vocational centre. The psychometric analysis included: internal consistency, inter-rater and test–retest reliability, construct validity, convergent validity with the World Health Organization's Disability Assessment Schedule II, and feasibility. The Cronbach's alpha was 0.88 for the overall interview and always above 0.7 in the quantitative subdomains. The Kappa coefficients for test–retest were between 0.5 and 0.8, whereas inter-rater agreement was nearly perfect. Maximum-likelihood factor analysis showed four well-defined factors, which fitted the previously designed domains. Feasibility was also good. The SOFBI is a multi-domain, modular instrument which is feasible, reliable and valid for measuring the burden of family caregivers to adults with ID living in the community.