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Literature searches completed on 28.6.99

Chapter 6 : Being a Carer

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 Statements
The term Carer is taken to mean informal caregivers, rather than those. providing care in the formal sector on an organised and paid basis. Health gain benefit is assessed here as being for the carer’s health, not that of the patient. It is clear from the literature (and not surprising) that carers and the people they care for are individuals with a vast range of preferences and needs. The main message from many research publications is the need for flexibility and good co-operation, i.e. the service system (health, social services and voluntary) should be well informed about and sensitive to carers’ needs. Health service providers should co-operate with other agencies and should listen and respond to the expressed preferences of the people that they are trying to help. In general the ‘hard evidence’ base in this area is poor. As well as quantitative evidence, qualitative evidence is drawn on where it gives relevant insight, although care should be taken in generalising from qualitative studies.
6.1. Background
6.1a. There are about 5.7 million carers in Britain (3.3 million women and 2.4 million men). One in eight adults provides informal care and one in six households (17%) contains a carer. Of these 5.7 million, 1.7 million (ie 30%) devote at least 20 hours per week to caring. Of the 1.9 million caring for someone in the same household, 38% spent at least 50 hours on the activityi.

This contrasts with the results of the Welsh Health Survey which found that one in thirteen (7.5%) of adults in Wales is a carer of whom 12.5% usually care for more than 20 hours per weekii.

i. Rowlands O. Office for National Statistics, Social Survey Division. Informal Carers. An Independent Study Carried Out By The Office Of National Statistics On Behalf of The Department Of Health As Part of The 1995 General Household Survey. London: The Stationery Office, 1998
(Type IV evidence – observational information. Nationally representative sample of ca 18,000 adults living in private households in Great Britain)
ii. Welsh Health Survey 1998. Cardiff: The National Assembly for Wales, 1999
http://www/wales.gov.uk/polinifo/health/keypubs/
pdf/acro.htm [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%)
6.1b. It is estimated that, in Britain, there are between 15,000 and 40,000 young carers (those under the age of 18), many receiving no support at all from statutory or voluntary services. Frequent effects include the followingi.
  • Impaired educational development.
  • Isolation from other children of the same age.
  • Lack of time for play, sport or leisure.
  • Conflict between caring role and their own needs.
  • Lack of recognition, praise, understanding and assistance.
  • Feeling stigmatised.
  • Problems moving into adulthood.
  • Lost opportunities and limited horizons.
i. Department of Health Social Services Inspectorate. Young Carers: Something To Think About. Report of Four SSI Workshops May – July 1995. London: Department of Health, 1995
(Type V evidence – expert opinion)

 

 

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6.1c. An important factor in the success of social services arrangements for carers was joint working with other agencies - particularly the health service. Lack of planning of hospital discharge, tensions between health and social services staff and lack of management support of community health staff were all cited as inhibiting effective co-working i. i. Department of Health Social Services Inspectorate. What Next for Carers? Findings from an SSI Project. London, Department of Health, 1995
(Type V evidence – expert opinion)
6.1d. As measured by the SF-36, the physical health of carers under the age of 65 is a little poorer than others in their age-group (46.9 vs 50.6) and the mental component scores are lower amongst carers than non-carers in all age groupsi. i. Welsh Health Survey 1998. Cardiff: The National Assembly for Wales, 1999
http://www/wales.gov.uk/polinifo/health/keypubs/
pdf/acro.htm [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%)
6.1e. The prevalence of psychiatric morbidity is significantly higher in people who care for others in their own homes. The odds ratio for psychiatric morbidity (using the General Health Questionnaire, GHQ) was 1.52 (95% CI, 1.11-2.05) after adjusting for other known risk factorsi. i. Horsley S, Barrow S, Gent N, Astbury J. Informal care and psychiatric morbidity. Journal of Public Health Medicine 1998; 20(2): 180-185
(Type IV evidence – cross sectional survey of 4550 adults, 10.9% (496) of whom identified themselves as caregivers)
6.1f. One postal study revealed that 51% of carers had suffered a physical injury such as a strained back since they began to care. 52% had been treated for stress-related illness since becoming carersi. i. Henwood M. Ignored and Invisible? Carers’ Experience of the NHS. London: Carers’ National Association, 1998
(Type IV evidence – postal questionnaire of 5000 members of the Carers’ National Association, 3000 (60%) responders)
6.1g. The small number of studies on informal care in black communities show that carers appear to be unsupported and isolated. This is often exacerbated by communication difficulties and the lack of sensitive and appropriate services. Service provision continues to remain ethnocentric, geared to meeting the needs of the white majority. Furthermore, there is evidence to show that black carers are often more severely affected by the problems of poverty and bad housing. The higher proportion of multi-generational households in black communities should not be interpreted as showing that ‘black people look after their own’i. i. Butt J, Mirza K; Race Equality Unit. Chapter 7: Carers pp.101-114 in Social Care and Black Communities. London: Her Majesty’s Stationery Office, 1996
(Type V evidence - Race Equality Unit review of small observational studies, maximum sample size = 50)

 

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6.1h. There are positive as well as negative aspects to being a careri. However, a critical review of 29 studies of the gain experienced by informal carers of older adults revealed a lack of an adequate framework for such studies ii. i. Grant G, Nolan M. Informal carers: Sources and concomitants of satisfaction. Health and Social Care 1993; 1: 147-159
(Type IV evidence – review of observational studies)
ii. Kramer BJ. Gain in the caregiving experience: Where are we? What next? The Gerontologist 1997; 37(2): 218-233
(Type IV evidence – systematic review of 29 observational studies looking at carers of older adults with various conditions e.g. stroke, dementia, unspecified)
6.2. Health information
6.2a. Access to a special computer network (ComputerLink - providing information, communication and decision-support functions) by carers of persons with Alzheimer’s disease during a 1 year period increased caregivers’ decision making confidence (Decision Confidence Measure 51.9 ± 6 to 56.8 ± 7). However, decision-making skill was unaffected and the system was used mostly for mail and discussion, rather than information purposes i.
(Health gain notation – 4 "unknown")
Caveat: The quality of the information provided in ComputerLink was not described.
i. Brennan PF, Moore SM, Smyth KA. The effects of a special computer network on caregivers of persons with Alzheimer’s disease. Nursing Research 1995; 44(3): 166-172
(Type II evidence – randomised controlled trial of 102 caregivers)
6.2b. In a small study of an education/support programme (over two weekends) for carers of head injured survivors, the participants welcomed the programme but it had no measurable effect on coping skills, self-esteem or general well-being i.
(Health gain notation – 4 "unknown")
i. Acorn S. Assisting families of head-injured survivors through a family support programme. Journal of Advanced Nursing 1995; 21: 872-877
(Type III evidence – before and after study of 19 family members)

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6.2c. In one survey, 94% of carers were providing crucial medical care but only 33% had received training or guidance of any kindi.
(Health gain notation – 6 "likely to be ineffective or harmful")

 

i. Warner L, Wexler S. Eight Hours A Day and Taken For Granted? London: Princess Royal Trust for Carers, 1998
(Type IV evidence – questionnaire survey of 1346 carers from 23 Princess Royal Trust Carers Centres, 30% response rate; Analysis based on respondents who cared for 8+ hours per day (82%=331 carers)).
6.3. General support
6.3a. Home care crisis treatment with an ongoing home care package for people with severe mental illnesses has been shown to reduce family burden with a reduction in physical illness at 6-month follow-up (odds ratio, OR 0.31, 95% CI 0.13-0.73; Number needed to treat, NNT 4, 95% CI 2-14) i.
(Health gain notation – 2 "likely to be beneficial")
i. Joy CB, Adams CE, Rice K. Crisis intervention for people with severe mental illnesses. Cochrane Database of Systematic Reviews. Cochrane Library 1999, Issue 2.
http://www.update-software.com/ccweb/cochrane/
revabstr/ab001087.htm
[accessed 10.3.00]
(Type I evidence – systematic review of 5 randomised controlled trials)
6.3b. A systematic review of specialised continuing care models for persons with dementia showed that respite care, day programmes and/or counselling may increase the time to institutionalisation, but do not necessarily improve the quality of life for carersi.
(Health gain notation – 5 "unlikely to be beneficial")

Some studies reviewed did, however, show effectiveness to the carer of counselling and of admission of the severely demented person to a special unit i.
(Health gain notation – 4 "unknown")
See also Section 6.5

i. Roberts J, Browne G, Gafni A et al. Specialized Continuing Care Models For Person With Dementia: A Systematic Review of the Research Literature. Working Paper Series #97-5. Hamilton, McMaster University: System Linked Research Unit on Health and Social Service Utilization, 1997
(Type I evidence – systematic review)
6.3c. There is no significant evidence to support either the widespread adoption or the discontinuation of existing hospital at home schemes for patients. However, their carers expressed less satisfaction with hospital at home compared to in-patient care i.
(Health gain notation – 4 "unknown")
i. Sheppeard S, Iliffe S. Effectiveness of hospital at home compared to in-patient hospital care. Cochrane Database of Systematic Reviews. Cochrane Library 1999 Issue 3
http://www.update-software.com/ccweb/cochrane/
revabstr/ab000356.htm
[accessed 10.3.00]
(Type I evidence – systematic review of 5 small trial involving 866 patients, with little uniformity in the choice of outcome measures)
6.3d. It is unclear from the current available evidence whether outreach respiratory nursing assistance or other ‘shared care’ or ‘co-ordinated care’ approaches benefit patients with chronic obstructive pulmonary disease and/or their carers, or are cost-effective to the NHS. A Cochrane Review is underway. Outcomes measured for carers will be quality of life and satisfaction i.
(Health gain notation – 4 "unknown")

 

i. Smith B, Appleton S, Adams R, Southcott A, Ruffin R. Home care by outreach nursing for chronic obstructive pulmonary disease (Protocol). Cochrane Database of Systematic Reviews. Cochrane Library 1999, Issue 2
(Type I evidence – systematic review in progress) Now published: http://www.update-software.com/ccweb/cochrane/
revabstr/ab000994.htm
[accessed 10.3.00]

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6.3e. Two active behavioural treatments to patient/care-giver pairs for depression in dementia patients improved depressive symptoms in both patients and care-givers. The combined results for the two active treatment conditions as measured by the Hamilton Depression Rating Scale were significant [pre-test (8.06 ± 4.2), post-test (5.88 ± 2.8), 6-months follow up (6.19 ± 2.9)] compared to non-significant changes in the other conditions i.
(Health gain notation – 2 "likely to be beneficial")
i. Teri L, Lodgson RG, Uomoto J, McCurry SM. Behavioural treatment of depression in dementia patients: a controlled clinical trial. Journal of Gerontology 1997; 52B(4): P159-P166
(Type II evidence – controlled trial of two active treatments compared with typical care and a wait-list control of 88 patient-caregiver pairs, 72 completing the post-test)
6.3f. A home-based physical activity regime (with regular follow-up over four months) in sedentary older caregivers of memory disordered patients, reporting at least moderate amounts of stress, can lead to better anger control and, possibly, reduced systolic blood pressure i.
(Health gain notation – 2 "likely to be beneficial")
i. King AC, Brassington G. Enhancing physical and psychological functioning in older family caregivers: the role of regular physical activity. Annals of Behavioural Medicine 1997; 19(2): 91-100
(Type II evidence – randomised controlled trial of 24 caregivers)
6.3g. One study in a systematic review of randomised controlled trials, quoting data from individual trials, concluded that family intervention for people with schizophrenia and their families may reduce the burden felt by family carers (Mean difference –0.4, 95% CI, -0.7 to –0.9) and expressed emotion, but not the families’ ability to cope i.
(Health gain notation – 2 "likely to be beneficial")
i. Pharoah FM, Mari JJ, Streiner D. Family intervention for schizophrenia. Cochrane Database of Systematic Reviews. Cochrane Library 1999, Issue 2
http://www.update-software.com/ccweb/cochrane/
revabstr/ab000088.htm
[accessed 10.3.00]
(Type II evidence – randomised controlled trial of 60 patients and their caregivers)

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6.3h. A six session psychosocial intervention programme (which included support, problem solving and coping skills) for spouses of newly diagnosed cancer patients was effective only for a distressed sub-sample of caregivers (11 in treatment, 13 in control group) i.
(Health gain notation – 3 "trade-off between beneficial and adverse effects")
Caveat: In general, caregivers’ level of caring activities was low which may account for these findings.
i. Toseland RW, Blanchard CG, McCallion P. A problem solving intervention for caregivers of cancer patients. Social Science and Medicine 1995; 40(4): 517-528
(Type II evidence – randomised controlled trial of 80 spouses)
6.3i. Emotionally focused therapy resulted in a significant decrease of marital distress in couples with chronically ill children, post-treatment and at 5 months follow-up i.
(Health gain notation – 2 "likely to be beneficial")
i. Walker JG, Johnson S, Manion I, Cloutier P. Emotionally focused marital intervention for couples with chronically ill children. Journal of Consulting and Clinical Psychology 1996; 64(5): 1029-1036
(Type II evidence – randomised controlled, but unblinded, study of 32 couples)
6.3j. A comprehensive support programme (with individual and family counselling, continuous availability of ad hoc counselling and support group participation) in spouse caregivers of patients with Alzheimer’s disease, can substantially reduce the increase in symptoms of depressioni. It can also substantially increase the length of time that they are able to care for the patients at home. The average time to nursing home placement was 329 days longer (95% CI 47-611 days) in the treatment than the control group (p=.02) ii.
(Health gain notation – 2 "likely to be beneficial")
i. Mittelman MS, Ferris SH, Shulman E et al. A comprehensive support program: Effect on depression in spouse-caregivers of AD patients. The Gerontologist 1995; 35(6): 792-802
(Type II evidence – randomised controlled trial of 206 spouse-caregivers)
ii. Mittelman MS, Ferris SH, Shulman E, Steinberg G, Levin B. A family intervention to delay nursing home placement of patients with Alzheimer disease. Journal of the American Medical Association 1996; 276(21): 1725-1731
(Type II evidence – randomised controlled trial of 206 spouse caregivers)
6.3k. Given the limited nature of the evidence from randomised trials, it is not yet possible to recommend the following services versus conventional support for carers of people with Alzheimer’s disease i.
  • Individualised service assessment and planning
  • Technology-based carer networking
  • Carer-education/training
  • Multi-faceted/dimensional strategies (such as specialised carer assessment and training).

(Health gain notation – 4 "unknown")
Caveat: This review was limited to those caring for people with Alzheimer’s disease. Some of the studies put forward qualitative evidence that contradicts this conclusion. Further research is recommended.

i. Thompson C, Briggs M. Support for carers of people with Alzheimer’s type dementia. Cochrane Database of Systematic Reviews. Cochrane Library 1999 Issue 2.
http://www.update-software.com/ccweb/cochrane/
revabstr/ab000454.htm
[accessed 10.3.00]
(Type I evidence – systematic review, using the Cochrane Controlled Trials Register only, of 6 randomised controlled trials with methodological problems & looking at various services - 565 carers in total. The papers described above were not included in this review as included or excluded studies)

 

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6.3l. Six months after the start of an enhanced occupational therapy service (an average of 6 visits rather than 2-3) for stroke patients, the carers of patients receiving the enhanced service (but not the patients themselves) were less distressed than the carers of patients receiving the routine service. General Health Questionnaire, GHQ = 29 (0-13) for treatment and 26 (0-27) for control groupi.
(Health gain notation – 2 "likely to be beneficial")
Caveat: Not all patients had carers. Comparability of carers in control and intervention groups was not demonstrated.
i. Logan PA, Ahern J, Gladman JRF, Lincoln NB. A randomized controlled trial of enhanced Social Service occupational therapy for stroke patients. Clinical Rehabilitation 1997; 11: 107-113
(Type II evidence randomised controlled trial of 111 stoke patients and their carers)
6.3m. The introduction of a stroke family care worker improved patients’ and their carers’ satisfaction with services and had a marginal beneficial effect on some psychological and social outcomes (using a variety of measures) but did not improve measures of patients’ physical well-beingi.
(Health gain notation – 2 "likely to be beneficial")
Caveat: Only a limited subset of patients’ carers were studied and the comparability of the two groups of carers is not demonstrated.
i. Dennis M, O’Rourke S, Slattery J, Staniforth T, Warlow C. Evaluation of a stroke family care worker: results of a randomised controlled trial. British Medical Journal 1997; 314: 1071-1077
http://www.bmj.com/cgi/content/full/314/7087/1071 [accessed 10.3.00]
(Type II evidence – randomised controlled trial of 417 patients with an acute stroke. Carers analysis is on less than half this number)
6.3n. Individualised problem-solving counselling by trained nurses for carers of people with cognitive impairment during a 6-month period showed no improvement in psychosocial adjustment, psychological distress or caregiver burden at 12 months in the treatment compared to the control (usual care) group. However, all recipients stated that they found counselling helpful and it was of measurable benefit for a subgroup of carers with poor logistical analysis skills at baselinei.
(Health gain notation – 4 "unknown")
Caveat: This subgroup was identified retrospectively by an interaction effect. 119 carers were eligible for the study, 36 refused, 83 were randomised, 77 completed baseline data but only 58 completed the 12 months follow-up.
i. Roberts J, Browne G, Milne C et al. Problem-solving counselling for caregivers of the cognitively impaired: Effective for whom? Nursing Research 1999; 48(3): 162-172
(Type II evidence – randomised controlled trial of 77 carers)

 

 

 

 

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6.3o. Financial help from the ‘Family Fund’ for mothers of severely disabled children produced a limited although statistically significant reduction in the mothers’ perceptions of the stresses of caring for their child (as measured 10 days to 3 weeks after receipt of the grant). The mothers’ sense of well-being and adjustment also improvedi.
(Health gain notation – 2 "likely to be beneficial")
i. Beresford BA. Easing the strain: assessing the impact of a Family Fund grant on mothers caring for a severely disabled child. Child: Care, Health, Development. 1993; 19: 369-378
(Type III evidence – before and after study of 162 mothers)
6.3p. When support (six or more visits during a 12 month period) was provided by a specialist outreach nurse to patients with disability related to recent stroke there were no significant differences in stress (as measured by the general health questionnaire) experienced by carers in the treatment or control groups at any of the assessment points (3, 6 and 12 months). The study concluded that no proven strategy exists that can be recommended to address the psychosocial difficulties of patients with stroke and their familiesi. However, when a purposeful stratified subsample of carers in both groups were interviewed, the majority in the intervention group believed they had benefited from the specialist nurse’s visitsii.
(Health gain notation – 4 "unknown")
Caveat: The measurement tool (the Barthel Index) used in the randomised controlled trial (and in many other studies) may not be sufficiently sensitive to detect the amelioration of the worries, problems and frustration experienced by carers.
i. Forster A, Young J. Specialist nurse support for patients with stroke in the community: a randomised controlled trial. British Medial Journal 1996; 312: 1642-1646
http://www.bmj.com/cgi/content/full/312/7047/1642 [accessed 10.3.00]
(Type II evidence – randomised controlled trial of 140 patients and their carers)

ii. Dowswell G, Lawler J, Young J, Forster A, Hearn J. A qualitative study of specialist nurse support for stroke patients and care-givers at home. Clinical Rehabilitation 1997; 11: 293-301
(Type IV evidence – qualitative analysis, by semi-structured questionnaire, of 8 treatment and 7 control group caregivers)
6.4. Support Groups and Carers’ Centres
6.4a. Support group programmes for caregivers of people with dementia only seemed to improve knowledge of the condition. Eight months following the intervention (eight 3-hour sessions), there was no effect on the burden felt by the care-giver i and insufficient evidence of efficacy in terms of delayed institutionalisation ii.
(Health gain notation – 4 "unknown")
i. Hébert R, Leclerc G, Bravo G, Girouard D, Lefrançois R. Efficacy of a support group programme for care-givers of demented patients in the community: a randomized controlled trial. Archives of Gerontology and Geriatrics 1994; 18: 1-4
(Type II evidence – randomised controlled trial of 41 care-givers)
ii. Hébert R, Girouard D, Leclerc G, Bravo G, Lefrançois R. The impact of a support group programme for care-givers on the institutionalisation of demented patients. Archives of Gerontology and Geriatrics 1995; 20: 129-134
(Type II evidence – randomised controlled trial of 45 caregivers)
6.4b. A critical review of 21 studies that evaluated support groups for caregivers stated that there is insufficient evidence to allow definite conclusions about their usefulness to be drawn. It did, however, show that there were a number of positive effects and very few negative effectsi.
(Health gain notation – 4 "unknown")
Caveat: This review was not systematic and publication bias could well produce a picture like this.
i. Lavoie J-P. Support groups for informal caregivers don’t work! Refocus the groups or the evaluations. Canadian Journal on Aging 1995; 14(3): 580-603
(Type IV evidence – review of a variety of studies, not all experimental)

 

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6.4c. In contrast to the evidence on support groups (statements 6.4a and 6.4b) Social Services Inspectors received nothing but praise from carers involved with carers’ groups or carers centresi. In a survey of users of carers’ centres, carers stated that their most valuable support was a ‘listening ear’ and 59% had obtained this from a carers’ centre ii.
(Health gain notation – 2 "likely to be beneficial")
i. 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. Paragraph 1.19.
http://www.doh.gov.uk/scg/chance.htm [accessed 10.3.00]
(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)

ii. Warner L, Wexler S. Eight Hours A Day and Taken For granted? London: Princess Royal Trust for Carers, 1998
(Type IV evidence – questionnaire survey of 1346 carers from 23 Princess Royal Trust Carers Centres, 30% response rate; Analysis based on respondents who cared for 8+ hours per day (82%))
6.5. Day and Respite Care
6.5a. A systematic review of 18 studies concluded that respite interventions and individual psychosocial interventions are moderately effectivei.
(Health gain notation – 2 "likely to be beneficial")
Caveat: Only one of these studies was a randomised controlled trial.
i. Knight BG, Lutzky SM, Macofsky-Urban F. A meta-analytic review of interventions for caregiver distress: recommendations for future research. The Gerontologist 1993; 33(2): 240-248
(Type I evidence – systematic review of 18 studies)
6.5b. A more recent systematic review concluded that there is little evidence that respite care for a patient with dementia significantly affects caregiver burden or delays institutionalisation of the patient i.
(Health gain notation – 4 "unknown")
However, a qualitative study of services providing a break for carers of people with Alzheimer’s disease or related disorders (day care, relief care, sitting services) found that these were usually felt to be beneficial by the carerii.
(Health gain notation – 2 "likely to be beneficial")
See also Statement 6.3b.
i. Flint AJ. Effects of respite care on patients with dementia and their caregivers. International Psychogeriatrics 1995; 7(4): 505-517
(Type I evidence – systematic review of 4 controlled studies and carers of 762 patients)
Reviewed in the Database of Abstracts of Reviews of Effectiveness, Cochrane Library 1999 Issue 2
ii. Levin E, Moriarty J, Gorbach P. National Institute for Social Work Research Unit. Better for the Break. London: The Stationery Office, 1994
(Type IV evidence – A comprehensive survey of 530 confused elderly people & their carers with an interview survey, plus one year follow-up of 243 carers)
6.5c. A review of respite services for people with learning disabilities 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 provided i.
(Health gain notation – 2 "likely to be beneficial")
i. Cotterill L, Hayes L, Flynn M, Sloper P. Reviewing respite services: some lessons from the literature. Disability and Society 1997; 12(5): 775-788
(Type V evidence – expert summary from a non-systematic review of the literature)

 

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6.5d. Respite services for disabled children are of value and should, as far as possible, be tailored to the needs of the familiesi.
(Health gain notation – 2 "likely to be beneficial")
i. Ball M. Social Services Inspectorate. Disabled Children: Directions For Their Future Care. London: Department of Health, 1998
(Type V evidence – results of a series of seminars held by the Social Services Inspectorate in England during 1997)
6.5e. A descriptive study of family-to-family respite help for eight families where children had significant disabilities suggest that this arrangement was generally well received. Compared to a similar period in the previous year, the families’ need for other interventions (hospitalisation, physician visits, antibiotic treatment) was reducedi.
(Health gain notation – 2 "likely to be beneficial")
i. Mausner S. Families helping families: An innovative approach to the provision of respite care for families of children with complex medical needs. Social Work in Health Care 1995; 21(1): 95-106
(Type IV evidence – descriptive evaluation)
6.6. Carers’ Needs and Entitlements
6.6a. 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. But 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.
(Health gain notation – 4 "unknown")
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 10.3.00]
(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 10.3.00]
(Type V evidence – influential report)
6.6b. "The National Strategy for Carers":
The Government’s carers package is promised to include the following i.
  • A new charter on what people can expect from long-term care services.
  • Good health information for carers. (Carers need good information ii,iii). An NHS Direct helpline for carer information and government information on the Internet is planned.
  • Involvement of carers in planning and providing services. (Carers expect that professionals should listen to and respect their viewsiv).
  • New powers for local authorities to provide services and address carers’ needs.
  • Support for neighbourhood services, including carers’ centres. (Carers need reliable and satisfactory services ii,iv,v).
  • New special grant to help carers take a break (£140 million over the next 3 years). (There is a body of evidence suggesting that time off helps carers to cope and continue to care ii).
  • Financial support for working carers to remain under review.
  • Time spent caring will entitle carers to a second pension.
  • By 2050 carers could receive an extra £50 a week in today’s terms (proposals are under consultation).
  • Reducing council tax for more disabled people being cared for.
  • Considering scope for extending help to carers to return to work.
  • New census question to tackle incomplete information about carers.
  • Support for young carers, including help at school.

(Health gain notation – 4 "unknown")

i. "The National Strategy for Carers" London: Department of Health, 1999. http://www.doh.gov.uk/carers.htm [accessed 10.3.00]
(Type V evidence – influential report)

References to specific publications in this document are given below.
ii. Twigg J (ed.) Carers: Research and Practice. London: The Stationery Office, 1992
(Type V evidence – well referenced expert review biased towards authors’ own work)
iii. Warner L, Wexler S. Eight Hours A Day and Taken For Granted? London: Princess Royal Trust for Carers, 1998
(Type IV evidence – questionnaire survey of 1346 carers from 23 Princess Royal Trust Carers Centres, 30% response rate; Analysis based on respondents who cared for 8+ hours per day (82%))
iv. Quereshi H, Patmore C, Nicholas E, Bamford C. Overview: Outcomes for Older People and Their Carers. No.5 in Outcomes in Community Care Practice. University of York: Social Policy Research Unit, 1998
(Type IV evidence – group and individual interviews with 22 carers)
v. Department of Health Social Services Inspectorate (September 1995). What Next for Carers? Findings from an SSI Project. London, Department of Health 1995.
(Type V evidence – expert opinion)

 

 

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6.6c. An important, if not very recent, review of research into the needs of carers makes a series of points that are relevant to this topic i. A selection of these follow.
  • General practitioners occupy a pivotal position in community care but they tend to focus on the patient rather than the carer and are variable in their knowledge of service support particularly concerning relevant referrals outside the health sector (p.73-74).
  • Carers value information about the condition of the person they look after and GPs are particularly well placed to give this (p.74).
  • Acute hospital care is not attuned to carers’ needs. Consultant psychiatrists tend to be more aware of the existence of carers but their practice remains strongly focused on the patient (p.74).
  • Visits from social workers are valued by carers but there is little evidence that they – or other practitioners – mobilise complex packages of support for carers. (p.67).
  • The home care service is highly valued by clients and carers (p.68).
  • Community nurses are valued by carers (p.79).
  • Regular help from care assistants is valued by carers (p.102).
  • Day care is valued by carers and may help to enhance their mental well-being. It is particularly valuable where the cared-for person has dementia or exhibits behavioural problems. However, availability varies greatly between localities and client groups (p. 84).
  • Voluntary help may be seen as charity by carers. Payment of helpers may make more acceptable, and increase the range of help considered acceptable and the availability of helpers (p.100).
  • Carers value support groups as an opportunity to share experiences with people in a similar situation and to exchange information and emotional support (p.91).
  • Institutional respite is valued by those carers who use it, and there is evidence to suggest that it improves their levels of well-being. Attempts to maximise bed occupancy can lead to respite being provided in inflexible and standardised packages that do not meet the needs of individual carers (p.88-89).

(Health gain notation – 4 "unknown")

i. Twigg J. Carers Research and Practice. London: The Stationery Office, 1992
(Type V evidence – well referenced expert review biased towards authors’ own work)

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