LEARNING DISABILITIES

Health Evidence Bulletins - Wales

Literature searches completed on: 18th October 2000

 10: Carers and Caring

This bulletin is a supplement to, not a substitute for, professional skills and experience. Users are advised to consult the supporting evidence for a consideration of all the implications of a recommendation.

The Statements The Evidence
The term Carer is taken to mean informal caregivers, rather than those providing care in the formal sector on an organised and paid basis.
The ‘hard evidence’ base for carers specifically in the area of intellectual disability is limited. However, it is clear that carers and the people they care for are individuals with a vast range of preferences and needs. Just as one carer may find caring a stressful experience, another may find it enriching and rewarding. It is difficult to draw conclusions concerning interventions that work. The main message from the many research publications is the need for flexibility, i.e. the service system (health, social services and voluntary) should be ‘carer sensitive’. Health service providers should listen and respond to the expressed preferences of the people to whom they are providing services. A related chapter, covering the evidence for supporting carers in general, is available in the Healthy Living Bulletin (http://hebw.cardiff.ac.uk/healthyliving/chapter6.html, accessed 8.12.00).
10.1 Epidemiology and Background
10.1a. In the 1998 Welsh Health Survey, one in thirteen (7.5%) of adults reported that they were carers and one in ten of those cared for had intellectual disabilityi. i. Welsh Health Survey 1998. Cardiff: The National Assembly for Wales, 1999
http://www.wales.gov.uk/subihealth/topics-e.html#Health
[accessed 8.12.00]
(Type IV evidence – survey of 50,023 adults, 1 in every 45 adults in Wales, with a response rate of 63%)
10.2 Gain and Strain in Caregiving
10.2a. Informal carers of learning disabled adults reported 40% more limiting health disorders than the general population, with depression almost four times more common among female carers (standard morbidity prevalence ratio for depression = 3.7, 95% CI, 2.4-5.7)i. i. McGrother CW, Hauck A, Bhaumik S, Thorp C, Taub N. Community care for adults with learning disability and their carers: Needs and outcomes from the Leicestershire register. Journal of Intellectual Disability Research 1996; 40(2): 183-190
(Type IV evidence – cross-sectional study, based on the Leicestershire Learning Disabilities Register, to describe the prevalence of disabilities, felt needs, and use of services for 2,117 learning disabled adults, and to compare outcomes of morbidity, stress, and satisfaction among 982 informal and residential carers)

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10.2b. In a large Dutch study, the significant predictors of caregiving burden were time demands, child physical health, child adaption skills, (less) service use and parents (lower) educational level. Service needs of parents varied according to the age range of the child i. The major needs mentioned were:
  • Age 0-9: Information and help with developmental issues, medical/dietician/speech therapy advice, in-home respite;
  • Age 10-19: Information and help with development and future residential living, leisure activity and respite care, dental help;
  • Adults: Information and concrete help re future out-of-home placements, information and advice from physicians.
i. Haveman M, van Berkum G, Reijnders R, Heller T. Differences in service needs, time demands, and caregiving burden among parents of persons with mental retardation across the life cycle. Family Relations: Interdisciplinary Journal of Applied Family Studies. 1997; 46(4): 417-425
(Type IV evidence – population-based study in the Netherlands of 2,573 parents of children with intellectual disability living at home – A 77% response rate to the distribution of 3327 questionnaires)
10.2c. The presence of significant behaviour problems is more important than disability type in determining most forms of parental stress, and predicts mental health services use. Parents of children with intellectual disability worried most about providing ongoing care into adulthood. Single mothers were not more stressed but used more services than 2-parent families i. i. Floyd FJ, Gallagher EM. Parental stress, care demands, and use of support services for school-age children with disabilities and behavior problems. Family Relations: Interdisciplinary Journal of Applied Family Studies. 1997; 46(4): 359-371
(Type IV evidence – study, in the US, of mothers and fathers of 231 children (aged 6-18 years) with intellectual disability with (n=46) or without (n=46) behaviour problems, or chronic illness, and a nondisabled behavior-problems sample (n=66). No details were given as to how the sample was recruited)

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10.2d. Caregivers report the existence of pervasive rewards and gratifications, as well as stresses, as part of the caregiving experience, and these stem from various sourcesi,ii.
The collection of six predictors of burden and satisfaction, findings indicate that greater support from the adult child to the caregiver resulted in greater satisfaction and less burden. Adaptive and maladaptive behaviours and caregiving assistance all predicted caregiving satisfaction but only maladaptive behaviours predicted caregiving burden. The study also found that increased levels of support by the caregiver to the adult with intellectual disability was associated with greater caregiving satisfactionii.
In contrast, another study found that neither help given, nor help received demonstrated significant effects on either positive well-being, negative well-being or subjective burdeniii.
i. Grant G, Ramcharan P, McGrath M, Notan M, Keady J. Rewards and gratifications among family caregivers: towards a refined model of caring and coping. Journal of Intellectual Disability Research 1998; 42(1); 58-71
(Type IV evidence – preliminary analysis of a qualitative study of 120 families supporting children and adults with intellectual disability in Wales)
ii. Heller T, Miller AB, Factor A. Adults with mental retardation as supports to their parents: effects on parental caregiving appraisal. Mental Retardation 1997; 35(5): 338-346
(Type IV evidence – study by survey and interview of 80 primary caregivers of adult children, mean age 42 years, with intellectual disability in the United States)
iii. Smith GC. Caregiving outcomes for older mothers of adults with mental retardation: A test of the two-factor model of psychological well-being. Psychology & Aging 1996; 11(2): 353-361
(Type IV evidence – Test of a two-factor model of caregiving appraisal and psychological well-being, tested with 225 older mothers providing care at home to an offspring with intellectual disability in New York)
(The above studies used volunteer rather than representative samples, and cross-sectional rather than longitudinal study designs. Studies ii and iii were based in the United States)
10.2e. The marital status of the caregiver, the level of retardation, frequency of maladaptive behaviours, and health status of the adult family member with mental retardation; and the number and level of services needed were factors in the stress experienced by familiesi. i. Hayden MF, Goldman J. Families of adults with mental retardation: Stress levels and need for services. Social Work 1996; 41(6): 657-667
(Type IV evidence – interview data from a convenience sample of 105 families of adults (aged 20+) with intellectual disability living in Minnesota, US)

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10.2f. Parental responses indicate that caretakers of adult children with intellectual disability are worried and feel responsible for their care regardless of residential placement. There were no statistically significant differences between carers of adult children living in-home and out-of-home in terms of social burdens, gratifications (eg intimacy), emotional burdens or objective burdensi. i. McDermott S, Valentine D, Anderson D, Gallup D, Thompson S. Parents of adults with mental retardation living in-home and out-of-home: caregiving burdens and gratifications. American Journal of Orthopsychiatry 1997; 67(2): 323-329
(Type IV evidence – interviews with 95 volunteer families of adult children living at home (n=55) or out-of-home (n=44) in the US. The authors acknowledged that, due to the study’s cross-sectional design, it was not possible to determine if the individuals in out-of-home placements had been more burdensome to their parents prior to placement compared to those in the in-home group)
10.3 Support and Respite Care
10.3a. The leading unmet needs reported by informal carers were for financial help, long-term social support, respite care and housing adaptationsi. i. McGrother CW, Hauck A, Bhaumik S et al. Community care for adults with learning disability and their carers: Needs and outcomes from the Leicestershire register. Journal of Intellectual Disability Research 1996; 40(2): 183-190
(Type IV evidence – cross-sectional study based on the Leicestershire Learning Disabilities Register to describe the prevalence of disabilities, felt needs, and use of services for 2,117 learning disabled adults, and to compare outcomes of morbidity, stress, and satisfaction among 982 informal and residential carers)
10.3b. Younger caregivers are more predisposed toward seeking outside help and have higher expectations of the service system than older caregivers. Overall there were no differences in the number of support services received. However, younger caregivers reported significantly more unmet service needs and rated significantly more of them as a critical or an emergency need. Older caregivers were more likely to seek spiritual support and the younger caregivers more apt to mobilize their families to acquire and accept helpi. i. Hayden MF, Heller T. Support, problem-solving/coping ability, and personal burden of younger and older caregivers of adults with mental retardation. Mental Retardation 1997; 35(5): 364-372
(Type IV evidence – interview data from a convenience sample of 105 families of adults (aged 20+) with intellectual disability living in Minnesota, US)

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10.3c. From a longitudinal study of older mothers caring for an adult with intellectual disability, the authors made the following conclusions i:
  • support groups were not beneficial although some groups may provide a forum for social contact and information exchange
  • mothers whose friendship networks were composed largely of close friends who were also coping with a relative with disabilities, reported greater increases in burden than those with more diverse networks
  • mothers who were pessimistic about their son’s or daughter’s future had increasing levels of burden and depressive symptoms over time. Service providers could encourage these parents to make arrangements to help them reduce their fears and pessimism
i. Greenberg JS, Seltzer MM, Krauss MW, Kim H-W. The differential effects of social support on the psychological well-being of aging mothers of adults with mental illness or mental retardation. Family Relations: Interdisciplinary Journal of Applied Family Studies. 1997; 46(4): 383-394
(Type IV evidence – longitudinal study, over three years, of volunteer mothers (aged 55 years and older) of adults with mental illness (n=73) or intellectual disability (n=288) living in the US)
10.3d. Interview data showed that support services for adult offspring were positively received by parents in the way they interrupted, what would otherwise be, a continuous cycle of care. However, for some parents the nature of the provision was such that support services heightened rather than moderated their sense of living a restricted lifestyle. The authors noted that the challenge for service providers and planners is to find innovative responses to these parents by allowing a greater flexibility of provision.
The paradox is that, greater support could lead to an increased demand for residential provision, as parents sought to emulate their non-carer peersi,ii.
i. Todd S, Shearn J. Time and the person: The impact of support services on the lives of parents of adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 1996; 9(1): 40-60
(Type IV evidence – data from qualitative, in-depth interviews of 33 parents (aged 43-75 years) of co-resident adult offspring with intellectual disability. Of 40 randomly selected families in South Wales, 28 agreed to participate)
ii. Todd S, Shearn J. Struggles with time: The careers of parents with adult sons and daughters with learning disabilities. Disability & Society 1996; 11(3): 379-401
(Type IV evidence – as above)
10.3e. From a systematic review of the literature, the major recommendations to support informal carers of people with intellectual disability and challenging behaviour were thati:
  • stress management techniques were effective for use both routinely and at times of high arousal
  • respite care services which genuinely provide respite and are able to offer support both on a planned and crisis basis are valuable
  • information should be provided (eg regarding the child’s disability, challenging behaviour, support services and welfare benefits)

(Health gain notation – 2 "likely to be beneficial")

i. Allen, D. Mediator analysis: An overview of recent research on carers supporting people with intellectual disability and challenging behaviour. Journal of Intellectual Disability Research 1999; 43(4): 325-339
(Type IV evidence – descriptive systematic review (using PsychLIT, Medline and reference list follow-up))

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10.3f. Community Support Teams (CST) for people with intellectual disability and challenging behaviour report that they serve the majority of their clients (at least two thirds) with some degree of success. However, from an analysis of recent cases, the majority of cases successfully closed were closed due to such factors as the acceptance of recommendations or the person being referred on to another service after the completion of assessment rather than reduction in challenging behaviour (which accounted for only 36% of closures) i.
It was recommended that, due to the potential bias of positive reporting from Teams, the actual rather than reported outcomes of CST cases should also be examinedi.
One small study in the UK suggested that carers were satisfied with the Adult Learning Disability Community Support Team (CST). The most popular response was that a mild improvement in the referred problem (38%) or in life-quality (48%) had resulted from the referral. Areas of improvement suggested by carers included the provision of more information regarding the team’s role and more written information for referred cases ii.
(Health gain notation – 4 "unknown")
i. Emerson E, Forrest J, Cambridge P, Mansell J. Community support teams for people with learning disabilities and challenging behaviours: Results of a national survey. Journal of Mental Health 1996; 5(4): 395-406
(Type IV evidence – A survey of 65 community support teams in England and Wales, 71% useable responses)
ii. Witts P, Gibson KB. Satisfaction with an Adult Learning Disability Community Support Team. Journal of Applied Research in Intellectual Disabilities 1997; 10(1): 41-47
(Type IV evidence – questionnaire study including 48 carers in an urban industrial community in the UK, 73% response rate)
10.3g. A three year study found that adults with intellectual disability were more likely to move away from the parental home if their mothers were older and in poorer health. Following the move to out-of-home, 93.6% of the sample had a least weekly contact with the mother and 48.4% of mothers continued to provide help with at least one caregiving taski. i. Seltzer MM, Greenberg JS, Krauss MW, Hong J. Predictors and outcomes of the end of co-resident caregiving in aging families of adults with mental retardation or mental illness. Family Relations: Interdisciplinary Journal of Applied Family Studies. 1997; 46(1): 13-22
(Type IV evidence – prospective study of aging mothers living with an adult child with either intellectual disabilites (n=308) or mental illness (n=73) to determine the antecedents and consequences of the end of co-residence. This was a US study using a volunteer rather than a representative sample)
10.3h. A review of respite services for people with intellectual disability concluded that, although quantifiable results from research studies are limited, expressed satisfaction with respite and felt relief are sufficient criteria to justify the need. However it is generally considered that respite can influence the quality of life of carers (and users of the services) in both negative and positive ways. To provide a benefit, services must be flexible and responsive to users so that they feel confidence in the care providedi.
(Health gain notation – 4 "unknown")
i. Cotterill L, Hayes L, Flynn M, Sloper P. Reviewing respite services: some lessons from the literature. Disability and Society 1997; 12(5): 775-88
(Type V evidence - expert summary from a non-systematic review of the literature)

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10.3i. In a questionnaire study of families of children with an intellectual disability, respite care was generally preceived as an inadequate service, although 88% of respondents had no knowledge of the existence of respite-care servicesi.
Mothers found a pilot summer respite scheme for children with intellectual disability (aged 6-18 years) very useful and expressed felt needs for substantially more such provision both during the summer and at other timesii.
(Health gain notation – 4 "unknown")
i. Treneman M, Corkery A, Dowdney L, Hammond J. Respite-care needs – met and unmet: assessment of needs for children with disability. Developmental Medicine and Child Neurology 1997; 39(8): 548-553
Type IV evidence – questionnaire study of 634 families of children with a learning and/or physical disability in South London, UK. 49% response rate)
ii. McGill P. Summer holiday respite provision for the families of children and young people with learning disabilities. Child: Care, Health & Development 1996; 22(3): 203-212
(Type IV evidence – results of interviews with mothers of 18 children who attended the scheme in the Medway, UK)
10.3j. A review of research approaches and service design for people with intellectual disability and their carers noted the following research gaps in the literaturei:
  • A dearth of longitudinal studies and therefore deficits in evidence about caring and adaptation over the life course, over the course of disability, and how carers manage service transitions
  • A failure to fully involve carers and families in setting the research agenda
  • A concentration on the perspectives of mothers and caregiving dyads (eg mother-child, carer-professional) to the exclusion of the broader family relationships
  • The lack of a balanced examination of stress, uplift and effective coping in families (ie considering both the strain and gain of caregiving)
  • A failure to include both user and carer views in research. The chances of obtaining the views of people with intellectual disability (including profound disability) should be maximised, for example via generation of research questions by users and differing communication techniques. Improved outcomes for carers should be accompanied by gains for their dependents.
i. Grant G, Ramcharan P. Views and Experiences of Users and Carers: A Research Review. University of Sheffield: Department of Health Learning Disability Research Initiative, 1999
(Type IV evidence – descriptive systematic review of the literature)

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10.4 Carers Entitlements
10.4a. The Carers (Recognition and Services) Act 1995 gives people who provide or intend to provide "a substantial amount of care on a regular basis" the right to request an assessment from social servicesi. The implementation of this Act is patchy ii,iii. Carers are not always informed of their rights (53% in one survey) ii and many Social Services staff are unclear about entitlement and lack relevant training iii. Assessments are not always carried out. Some carers are offered very sensitive and practical support, others almost nothing. However, when assessments are undertaken, carers report satisfaction both with the process and the results ii,iii. Carers should be entitled to expect at least an annual discussion of what they need, what is available, the help they are receiving and the care provided iv. i. Carers (Recognition and Services Act) 1995 (c.12)
(Type V evidence – influential report)
ii. Carers National Association. Still battling? The Carers Act one year on. London: CNA, 1997
(Type IV evidence – a questionnaire survey (1655 replies) from 12,000 members of the Carers National Association) and 50 follow-up interviews)
iii. Fruin D. Social Services Inspectorate. A Matter of Chance for Carers? Inspection of Local Authority Support for Carers. London: Department of Health Social Care Group, 1998. CI(98)19
http://www.doh.gov.uk/scg/chance.htm
[accessed 8.12.00]
(Type IV evidence – report of an inspection of 7 social services departments in England during 1997/8 using interviews & focus group techniques with users/staff and case file reviews)
iv. "The National Strategy for Carers" London: Department of Health, 1999
http://www.doh.gov.uk/carers.htm [accessed 8.12.00]
(Type V evidence – influential report)

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Health Evidence Bulletins: Wales, Duthie Library, UWCM, Cardiff CF14 4XN. e-mail: weightmanal@cardiff.ac.uk