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					A Review of Effective Carer Interventions


                    Appendix B


    Developed for the Caring for Carers Project



Department of Disability, Housing and Community Services
                    ACT Government




                   September 2003
There is a well established body of research that recognises carers experience poorer
physical and mental health than non carers (Schulz et.al. 1997). There is some
evidence that carers are at higher risk of mortality than non-carers (Schulz & Beech
1999). It would appear that certain groups of carers are more vulnerable to the
negative impacts of caring. These groups include carers who care for someone with
challenging behaviours, dementia or a have high level of daily dependency, carers
who experience family conflict, financial hardships, social isolation or have health
problems of their own (Sharlach et.al. 2001).


In developing services to support carers, it is important that the demonstrated
effectiveness of interventions on carer outcomes are well understood. The
effectiveness of interventions are commonly measured by their effects on carer
outcomes including carer burden, stress, coping, physical health, emotional well-
being, depression, quality of life and knowledge levels (Arksey et.al., 2002).


Respite, social support, education, information and counselling are among the most
prevalent interventions available to carers. The aim of this paper is to provide a
limited review of these interventions and to discuss issues relating to the effectiveness
of these interventions on outcomes for carers and the people they care for.
Implications for practice and research are included.


Respite

Common forms of respite (short breaks), include day care services, in home respite
care, overnight care in residential or hospital facilities and mixed respite care services.
Less common forms include leisure breaks organised after school or in holidays,
breaks provided in another families’ home, and residential holidays (McConkey &
Adams, 1999). Outcomes from respite are experienced by both the carer and the
person who receives the care.


Positive, neutral and negative outcomes have been reported from evaluations of
respite effectiveness. Ashworth & Baker (2000) reported that respite care facilitated
informal care and enabled care to continue at home for longer than would otherwise
have been possible, noting the most valued service component was the option of a
home-sitting service. McNally et.al. (1999) found little evidence that respite
intervention had a consistent or enduring beneficial effect on carers' well-being,
suggesting respite care fails to facilitate the maintenance of socially supportive
relationships which may moderate strain after respite has ended. They also found that
respite may positively encourage the decision to institutionalize the person receiving
care. Watkins and Redfern (1997) report reported worse relationships between some
carers and care recipients on returning from institutional respite.


Despite the mixed results of respite effectiveness, reviewers consistently note the high
level of satisfaction expressed by carers with respite services (Arksey et.al., 1999,
Sharlach et.al. 2001). This may be because carers receive more certain short term
benefits, but long term benefits remain uncertain.


Those who have reviewed the literature suggest small sample sizes, lack of research
and lack of comparability as reasons for a lack of consensus about the effectiveness of
respite (Arksey et.al., 1999, McNally et.al. 1999) and suggest that subtle differences
between the types of respite and elements within each type of respite determine
overall effectiveness. This implies further research is needed to determine what
respite is effective in a local context.


Authors highlight a number of perceived barriers to accessing respite. Chappell, et.al.
(2001) report some reasons carers give for not accessing respite include unfamiliarity,
cost, psychosocial conflicts over the appropriateness of respite care; and philosophical
values opposed to respite care. Ashworth & Baker (2000) suggest there may be a
social stigma attached with using respite, finding that regardless of the quality of
respite, many felt that use of respite might be viewed as a signal to the patient, the
family and the local community that they were no longer able to cope. McConkey
and Adams (1999) suggest that lower socio-economic status may be a social barrier to
participating in some forms of respite care that employ carers from relatively affluent
backgrounds. These findings suggest further research is needed to understand the
barriers to accessing services in a local context, in order to fully realize service
utilization of respite services.

Respite based on needs defined by carers may reduce the barriers to accessing respite.
Chappel et.al (2001) report carers define “respite” or “taking a break” differently to
policymakers, professionals, and researchers, and suggest carers should be asked to
define their own needs and what they consider to be effective respite in reducing
barriers to services. McConancy & Adams (1999) report carers prefer services that
benefit the child as well as giving the carers a break. Their study found that families
were unanimous in their desire for more leisure activities and holiday breaks; and
cited this preference as a recurrent theme in the literature. The study further found per
person costs were lower for in-home respite, leisure and family based breaks than
breaks in hospital and residential homes. These findings would suggest that the
tailoring of respite to the needs expressed by the carer and the person being cared for
is an important consideration. The findings in relation to cost effectiveness may
further suggest that trialling and evaluation of innovative forms of respite to meet
needs expressed by carers, may prove more efficient, effective and responsive than
institutional respite in the long term.

Social Support

In general, social support groups are designed to provide informal peer support, and
can provide information about diseases and disability, and referrals for caregiver
services and educational strategies.


There are mixed conclusions about support groups. Harding and Higginson (2003)
report positive outcomes from social support groups in their review of interventions
and their effectiveness for caregivers in cancer and pallative care. Pakenham et.al
(2002) report empirical evaluations of support groups among carers of people with
chronic illness, show reduced emotional distress, intrusive experiences, grief
reactions, stigma and demoralization, and the provision of useful information and
support. However, Toseland and Rossiter (1989) concluded that no clear link could
be established between support groups and carer experiences across a range of
outcome measures in their review of support groups for family caregivers of people
with mental illness. One possible explanation of the mixed conclusions is suggested
by Arksey et.al. (2002) who argue that standard outcome measures commonly used to
evaluate carer support groups may be inadequate, and suggest research needs to adopt
a more dynamic and theoretical approach to evaluating support groups which
considers the needs of carers at different stages and undertake experimentation with
different forms of support groups.
Research indicates that support groups seem to benefit young carers. Phillips (1999)
reported decreases in stress, increases in perceived social support, and reduced
depression and anxiety and higher self-esteem in an evaluation of a support group for
siblings of children with developmental disabilities. Duaz- Williams et.al (1997)
report support group intervention helped siblings to deal with their emotions, and
understand their sibling's illness in a study of a social support intervention for siblings
of chronically ill children.


Lower socio-economic status can be a barrier to utilisation of support groups. Norton
et.al (1993) reported members of self-help groups tended to be white, highly, educated
and higher up the economic scale. Possible reasons as to why carers on low incomes
are unable to access support include not being able to access transport or substitute
care (Kendrick & Simon, 2002) and possible stigma associated with being less
affluent than peers (McConkey and Adams, 1999). These findings suggest support
groups should reduce barriers associated low income to ensure equitable access to
carer supports.


The use of information technology (IT) has been shown to facilitate social support
activity and benefits among carers and the people they care for. Andersson et. al
(2002) reported unexpected benefits of rapid social networking between families and
within extended families in their evaluation of a project which aimed to help families
in their caregiving role through email and IT education. Storck (2002) reports family-
like relationships and dynamics develop online, electronic communication reduces
caregiver burden and stress and support large group dynamics such as mirroring,
exchange and citizenship in a study on internet and electronic communications among
carers. These finding suggest that IT can be a useful supplement to informal carer
support. Utilisation of IT interventions might also consider how to include those who
are unable to afford access to IT.

Education

Evaluations of carer education strategies report a range of positive outcomes for the
carers and the people being cared for. In a review of educational interventions of
carers of people with mental illness, Arksey et.al. (2002) note that education has
immediate positive outcomes in reducing stress and increasing knowledge, but only
knowledge is retained over time. This suggests that education should be used in
conjunction with other interventions to effect broader carer outcomes.


Important elements of effective education interventions appear to be those that
combine practical real-life knowledge, coping strategies and relationship support.
Pusey and Richards (2001) found individualised interventions that utilised problem
solving and behaviour management (coping strategies) demonstrated the best
evidence of effectiveness. Dorfman et. al. (1996) found effective educational
interventions are those that encompass the caregiver/care-recipient relationship
(communication and support issues), identify social support networks, and promote
caregiver self-efficacy and health. Schweibert et.al.(1994) found that effective
educational interventions for adult children caring for ageing parents, include
knowledge of community resources and the ageing process, provision of emotional
support, and development of stress reduction techniques and coping strategies.


Education programs should be culturally appropriate. Gallagher-Thompson et al
(cited in Sharlach et.al. 2001 ) report culturally tailored skills programs for Latina and
Caucasian women caregivers were found to be more effective in reducing depression,
increased positive coping and fostering aspects of social support, than traditional
support groups. Scharlach et.al. (2001) report that the experience of caring varies
across cultures, for reasons including different levels of informal support from
families and friends, different values placed on individuality as compared with
familial consensus or elder/leader authority and different expectations about family
responsibilities. Holyroyd (2003) in examining caregiving in Hong Kong, highlights
interventions that draw on cultural assumptions that emphasise individualism and self
autonomy, and may not be effective in cultures that emphasise the existence of self in
relation to others. These findings would suggest that educational programs need to
consider the cultural aspects of caring.


Information

The evidence suggests that carers want different information at different points in
time after the onset of disability. Kendrick and Simon (2002) report the provision of
information should be an ongoing process covering all aspects relevant to caring and
tailored to the needs of carers and patients at a particular point in time, in their study
of carers of people with stroke. They further found that the older the carer, the less
satisfaction with information received and the harder it is to obtain more information.
Salvage (1998) also found that the older the person, the lower the level of awareness
about available services. These findings would suggest that information should be
tailored to the individual carer with respect to their age and stage of the caregiving
relationship.
The research suggests that the provision of printed information is insufficient, on its
own, to meet the needs of carers. Weuve et.al. (2002) reported caregivers who were
provided with a detailed case management plan and linked directly to services
reported less burden than caregivers who were provided with written information and
service referrals. Done & Thomas (2001) found that a short training workshop in
communication techniques was more effective than an information booklet for
improving communication skills in informal carers of people suffering from dementia.
These findings suggest that linkages to services are more effective than just being
provided with a phone number or printed information.


Counselling

Counselling aims to help caregivers improve their ability to cope with the stresses of
caring. Interventions are delivered one on one, family or group interventions and are
based on different theoretical approaches.


The evidence of counselling interventions appears to yield positive outcomes for
particular carers groups, however the extent of these benefits are unclear. Mittleman
et.al (1996) reported delayed institutionalization in a study of counseling for carers of
people with Alzheimer’s. Szmukler et.al. (1996) reported no impact on the negative
aspects of care giving or in coping style, and slightly greater psychological morbidity
at follow-up in a study of a brief, intensive counselling intervention for carers of
people with schizophrenia. These finding suggest further research is needed to
ascertain the elements of successful interventions and to identify which carer groups
would benefit from this more expensive intervention.


Positive behavioural interventions within family settings appear to be effective in
alleviating carer stress by increasing carer’s skills in managing challenging behaviour.
Allen (1999) reported positive outcomes for interventions that included contingency
management approaches and interventions that focussed on the problem behaviour,
helped families interpret their children's behaviour in a more positive way and helped
to maintain positive parent-child interactions. Pusey & Richards (2001) report that
the most effective interventions featured a behavioural element focusing on problem
solving and strategies for behaviour management, in a review of the effectiveness of
psychosocial interventions for carers of people with dementia. These findings suggest
that carers of children or adults with challenging behaviour could enhance their
coping skills through counseling interventions.


Research suggests intervening at a caregiver/care-recipient level may produce better
outcomes for both the caregiver and care-recipient than intervening at the individual
caregiver level. Pakenham et.al. (2001) report that joint counselling between spouse
carers of people with chronic illness, is a more effective treatment approach because
partners tend to use complementary or similar types of coping strategies. This joint
counselling included structured problem solving, cognitive restructuring, contingency
management, communication skills training and time management. Zarit and
Toseland (1989) report however that adult children and spouses respond quite
differently as caregivers to the same support/intervention program. These finding
support the importance of evaluating outcomes for both the carer and care recipient.


Implications for Practice and Research

This has been a necessarily narrow selection of studies from a much larger, substantial
body of international research on carer interventions. Caution should be taken as to
generalising the results discussed here.


Recurrent themes which seem to emerge from the literature on caregiver interventions
are that:


    1. The effectiveness of interventions varies across carers groups and the people
        who they care for. Interventions need to be sensitive to the carer/care
        receiver’s relationship, type of disability or chronic illness, stage in the caring
        lifecycle, age, gender and culture.

    2. It would appear that no intervention on its own is effective, but are more
        useful when used to supplement to other interventions.

    3. Carer support services should be designed to meet the holistic needs of the
        carer and person being cared for, rather than based around individual
        interventions.

    4. A number of social and economic barriers appear to affect the utilisation of
        carer support services. It is important that these barriers are more fully
   understood in a local context, and interventions are designed to reduce their
   effects.

5. While many studies identified here report some positive outcomes, there is a
   lack of evidence supporting the effectiveness or ineffectiveness of
   interventions. These studies consistently highlighted methodological
   weakness in evaluations. This suggests that new interventions need to be
   supported by robust evaluations which are sensitive to effectiveness over time.
   Understandings of need, outcomes and effectiveness will be influenced by
   continued research in this area.

6. The research on the effectiveness of interventions is inconclusive. Given the
   uncertainty of results and the shift towards increased consumer/carer
   participation in decision making, it is important that new interventions are
   designed and evaluated based on notions of need, outcomes and effectiveness
   defined by carers and people who receive care.
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