Question & problem
Many people with disabilities require the assistance of other people in order to go about their daily lives. In high-income countries, home-based carers are professional or para-professional workers who provide assistance to people with disabilities, in their homes. They are often well-trained, and remunerated for their services. However, individuals with disabilities in many low- and middle-income countries (LMIC) predominantly live with their family, and receive home-based care from family members. There are some stresses associated with giving care to others, and these include burnout, compassion fatigue, and an array of emotional and social consequences related to the caring role. The carers, too, need care. This evidence brief summarises what we know about how to support home-based carers, taking into consideration that these people, in LMIC, are often untrained, unpaid family members of the person for whom they are caring.
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Recommendations
Key recommendation
Action
Governments and community-based organisations, as well as other stakeholders need to give clear priority to the provision of services for family carers. Multi-sectoral coordination could usefully direct action in this area.
Key recommendation
Action
Peer support groups and community health worker-led psychosocial and problem-solving interventions can be effectively delivered in LMIC. Priority needs to be given to evaluating if these models, and delivering which content, work for carers of people with disability in LMIC.
Key recommendation
Action
To combat social isolation and the economic consequences of caring on family livelihoods, more research is needed to evaluate structural interventions to create enabling environments for carers in LMIC.
Key recommendation
Action
Paraprofessional and community health workers in LMIC could be leveraged to deliver training and psychoeducation interventions for carers, as improved self-efficacy in caring could improve not only carer wellbeing, but also quality of care. However, information alone is insufficient in lieu of psychosocial support.
Key recommendation
Action
Universally-delivered interventions should be provided to all carers, but that targeted, additional provision could be made for carers identified as more in need of support.
Challenges
Challenge #1: There is clearly a significant impact of caregiving burden on caregivers with respect to their physical, psychological, and social wellbeing, and constraints on time and financial resources.
- Globally, families with a disabled member are poorer than families without a disabled member. The activities of caring for a person with disability may further isolate caregivers, reduce their opportunities for employment, and lead to stress and emotional strain.
Challenge #2: Family carers of people with disabilities in LMIC require psychosocial support, yet the resources for professional counselling and support are limited.
- The literature from high-income settings shows that problem-solving interventions, cognitive restructuring, and other counselling techniques can be effective to improve coping and emotional wellbeing among professional and paraprofessional home-based carers.
- Yet, professional psychological human resources are limited in LMIC, and so alternative solutions for delivering these types of interventions need to be sought.
Challenge #3: Enabling environments need to be created for carers in LMIC, as systemic isolation and other forms of exclusion contribute to carer burden.
- The literature from LMIC is limited in respect to how much, how, and with what kinds of effect, respite care, cash transfers and other types of financial support, and social support interventions might contribute to the wellbeing and caring effectiveness of carers. Yet, it is apparent that the wider ecological environment in which the carer and the person for whom they are situated, plays a large role in coping.
Challenge #4: Family caregivers lack practical information about disability, and training in how to perform the practical aspects of care for their family member.
- Carers want clear, understandable information about their relative’s condition and want to develop skills that enable them to manage in difficult situations and provide optimal care.
- Yet, it is unclear to what degree these carers interact with formal healthcare services in LMIC, and whether these services, or community-based resources, can be effectively leveraged to train and educate family carers, and whether this impacts on care quality, and the wellbeing of carers.
Challenge #5: A host of factors influence what supports are effective to improve wellbeing among carers of people with disabilities, and yet it is not clear how targeting of supportive interventions may work in LMIC.
- There are a number of personal and social variables that should be considered in determining the type of stress and the corresponding support needs of carers. Examples include the quality and nature of the relationship between carer and family member with a disability, their socio-economic status, and the extent of their social support network.
- Ideally, then, supportive interventions would take into account the specific needs and vulnerabilities of individual carers, and be targeted to provide different types of supports depending on carers’ coping. However, this will require more research in LMIC, about which factors most influence carers coping, and which interventions should be delivered to whom, and on what basis.
- It may be that universally-delivered interventions should be provided to all carers, but that targeted, additional provision could be made for carers identified as more in need of support.
Finding the answers
We conducted a review of reviews, examining systematic, narrative, and other types of review evidence on the topic of supporting home-based carers for people with disabilities (including the frail and people with disabling illnesses). Forty-eight reviews were examined to arrive at the present evidence note. Four reviews concerned LMIC evidence only, while most of the rest drew entirely on HIC research. All recommendations which are drawn from high-income country literature are based on an assessment that the findings and actionable evidence were transferable to low-resource settings.
Recommendations & actions
Key recommendation
Action
Governments and community-based organisations, as well as other stakeholders need to give clear priority to the provision of services for family carers. Multi-sectoral coordination could usefully direct action in this area.
Key recommendation
Action
Peer support groups and community health worker-led psychosocial and problem-solving interventions can be effectively delivered in LMIC. Priority needs to be given to evaluating if these models, and delivering which content, work for carers of people with disability in LMIC.
Key recommendation
Action
To combat social isolation and the economic consequences of caring on family livelihoods, more research is needed to evaluate structural interventions to create enabling environments for carers in LMIC.
Key recommendation
Action
Paraprofessional and community health workers in LMIC could be leveraged to deliver training and psychoeducation interventions for carers, as improved self-efficacy in caring could improve not only carer wellbeing, but also quality of care. However, information alone is insufficient in lieu of psychosocial support.
Key recommendation
Action
Universally-delivered interventions should be provided to all carers, but that targeted, additional provision could be made for carers identified as more in need of support.
Policy priorities
Multi-sectoral coordination between governmental Departments/Ministries, allied agencies, non-governmental organisations, and community-based partners, will be important for the agenda of ‘care for carers’ to gain momentum, and become the policy and programming priority which is needs to be. The possibility of government-led structural interventions should be examined, and costed at the national level, as – in LMIC – systematic factors contribute to care burden
Conclusion
In general, there is a lack of review evidence from low- and middle-income countries specifically dealing with how to support carers of people with disabilities. Yet, the component parts of such a literature exist; we know much about the economic and social state of families affected by disability in LMIC, and about the needs of carers, and even about psychosocial programming for wellbeing using paraprofessional and community health worker cadres. What is required is more systematic and comprehensive bringing-together of these literatures, to make a strong case for investment in specific programming, for carers in LMIC.
Gaps & research needs
There is an urgent need for more review evidence from low- and middle-income countries specifically dealing with how to support carers of people with disabilities.
There is a need to know which, if any, structural interventions may work to support carers of people with disabilities in LMIC, as well as which evidence-based universal interventions can be delivered by paraprofessional and community health workers.
Finally, there is a need to establish the factors according to which some carers may be identified for targeted support.
Acknowledgements
Publication details: © Disability Evidence Portal, London School of Hygiene & Tropical Medicine, August 2019.
Suggested citation: Xanthe Hunt. Evidence Brief: What interventions are effective to support home-based carers? Disability Evidence Portal, 2019.
Disclaimer: The views expressed in this publication are those of the author/s and should not be attributed to Disability Evidence Portal and/or its funders.