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Empowering caregivers

The Bottom Line

  • Despite their critical roles, caregivers often feel unprepared to provide care and often receive little guidance from healthcare providers. 

  • Research evidence reveals knowledge, skills, attitudes, behaviours and resources required to empower caregivers.

  • Caregivers often grapple with constantly changing roles, grasping medical knowledge, emotional stress, financial strains, and changing family dynamics; they need greater affirmation and validation of their roles.

Canada, like most high-income countries, is experiencing an aging population, with those over 65 being on track to represent 25% of the Canadian population by 2050. This shift in population demographics is requiring significant changes in the delivery of health and social services including an increased focus on helping individuals to age well at home. Canadians have thus been called on to provide a significant amount of caregiving to their friends and families. A pan-Canadian study from 2012 show that each day bout 28% of Canadians provide care for a family member, friend or neighbour, and that approximately half of Canadians will do so over the course of their lifespan.(1)

Despite their critical roles, caregivers often feel unprepared to provide care and often receive little guidance from healthcare providers. How can we empower them so that they can have the confidence to deliver care to their loved ones?

What the research tells us

A recent rapid synthesis examined 27 systematic reviews and 15 primary studies to identify the knowledge, skills, attitudes, behaviours and resources required to empower caregivers.(2)

Research evidence reveal that caregivers need to be empowered with disease-specific knowledge for them to understand the health conditions and how to manage symptoms, plan for future decisions, make timely decisions about preferences for future health and personal care, maintain community connection, and access peer support. Research evidence also emphasizes other key knowledge required to empower caregivers, including knowledge of care transitions (for example, how to manage the transition from hospital to home), community services available, as well as knowledge about the health system more generally and the roles of the various healthcare providers.

In terms of required skills, research evidence emphasizes the importance of caregiving skills such as how to provide personal care and rehabilitation care. Coping skills, problem-solving skills, communication skills, and note-taking skills have also been identified as critical to empower caregivers. Research focusing on caregivers of older adults with dementia also highlights the need to develop caregiving skills in order to deal with people who may be confused, incontinent and depressed.

There is limited research evidence about the attitudes and behaviours needed by caregivers. With regards to attitudes, research evidence indicates the importance of cultivating positive attitudes towards people with dementia (since people with dementia may exhibit behaviours that make their care more challenging and can disrupt the lives of caregivers and others at home). In addition, research evidence shows that caregivers often have difficulties working in an unrecognized role without adequate financial, informational or educational resources to support them. In particular, caregivers often grapple with constantly changing roles, grasping medical knowledge, emotional stress, financial strains, and changing family dynamics. Thus, caregivers need greater affirmation and validation of their roles to really feel empowered.

 

Seeking support to be empowered

If you feel the need to be more empowered to provide care to your loved ones, some strategies could help you, such as:
- using structured information tools (for example, patient decision aids) and sharing life stories can help to improve communication and shared decision-making between patients, caregivers and healthcare providers;(3)
- interventions to improve coping and problem-solving skills can help to support caregivers’ well-being and reduce the number of problems they experience;(4; 5)
- mindfulness training can reduce depression, anxiety and burden, as well as increased quality of life, hope and overall mental health of caregivers;(6)
- web- and computer-mediated programs can be as effective as face-to-face interventions to deliver information, education, training, and psychosocial and behavioural supports to caregivers;(7) and
- peer helpers can provide caregivers with greater affirmation and validation of their roles.(8)

 

The content of this blog post is based on a rapid synthesis prepared by the McMaster Health Forum on empowering caregivers to deliver home-based restorative care.


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Author Details

References

  1. Turcotte M. Family caregiving: What are the consequences? Ottawa; Statistics Canada: 2012.

  2. Wilson MG, Waddell K. Rapid synthesis: Empowering caregivers to deliver home-based restorative care. Hamilton: McMaster Health Forum, 27 May 2019.

  3. Morrow EM, Nicholson C. Carer engagement in the hospital care of older people: An integrative literature review. International Journal of Older People Nursing 2016;11(4): 298-314.

  4. Thompson CA, Spilsbury K, Hall J, Birks Y, Barnes C, Adamson J. Systematic review of information and support interventions for caregivers of people with dementia. BMC Geriatrics 2007;7: 18.

  5. Greenwood N, Pelone F, Hassenkamp AM. General practice based psychosocial interventions for supporting carers of people with dementia or stroke: A systematic review. BMC Family Practice 2016;17: 3.

  6. Jaffray L, Bridgman H, Stephens M, Skinner T. Evaluating the effects of mindfulness-based interventions for informal palliative caregivers: A systematic literature review. Palliative Medicine 2016;30(2): 117-31.

  7. Stewart M, Barnfather A, Neufeld A, Warren S, Letourneau N, Liu L. Accessible support for family caregivers of seniors with chronic conditions: From isolation to inclusion. Canadian Journal of Aging 2006;25(2): 179-92.

DISCLAIMER: The blogs are provided for informational purposes only. They are not a substitute for advice from your own healthcare professionals.

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