Research focus

Supporting carers as individuals to improve quality of life

Three recent studies observe the support given to carers

A total of 20% of carers have no support according to a Health Education England report (Health Education England 2018), but support for carers can build resilience and confidence (NHS England 2018). This research digest looks at three recent research studies relating to the support of carers.

Key points

  • Healthcare professionals are well positioned to support carers as individuals
  • There are evidenced-based tools to support assessment
  • Specific carer groups have specific needs

Picture: Alamy

Updated meta-review of evidence on support for carers

Support strategies undertaken with individuals and groups of carers were examined in this study. The methodology used a rapid meta-review of systematic reviews undertaken over the period 2009-2016, including 61 studies relating to effective interventions to support those caring for adults. This study updates a 2010 meta-review.

The research reports no clear intervention which is effective in universally supporting carers, but the findings do demonstrate effective support for those caring for adults with similar health conditions.

For carers working with people experiencing dementia, interdisciplinary learning for the carer and person being cared for can be effective, as can cognitive re-framing, relaxation techniques, and technology assisted psycho-social support. 

Art therapy, problem-solving and communication skills and were useful for carers of people with cancer, and counselling was effective for family functioning and those caring for someone post stroke. Respite care was not reviewed as there was a lack of quality research, however the carers who reviewed this work commented it was a useful intervention.

The authors advocate that high quality, theory-based research is required to further explore the needs of carers and inform supportive interventions.

Dalton J, Thomas S, Harden M et al (2018) Journal of Health and Services Research and Policy. 23, 3, 196-207.

How best to assess quality of life in informal carers of people with dementia: A systemic review of existing outcome measures

Existing quality of life instruments for carers of people with dementia were reviewed with the aim of identifying the appropriate measurement for clinicians to use and to inform further research. A broad range of measures need to be considered due to the complexity of the meaning of quality of life, including psychological, physical, functional, social, resilience, and more. 

The systematic review used consensus-based standards for the selection of health status measurement instruments in medicine methodology, designed to measure self–reported outcomes. Ten existing instruments were reviewed.

The Carer Wellbeing and Support Questionnaire and the Care-Giver Wellbeing Scale were rated highly using this methodology. The descriptive nature of the instruments is reported as useful to practitioners.

It was not clear which tools are being used in practice currently. This may reflect the lack of evidence for existing tools when considering dementia carers. The authors conclude further specific testing for this cohort of carers is required, combined with rigorous evaluation. This will enable practitioners to discern the most appropriate instruments to inform their assessment and support of informal carers.

Dow J, Robinson J, Robalino S et al (2018) PLoS ONE 13 (3): e0193398.

Resilience for family carers of advanced cancer patients. How can health care providers contribute? A qualitative interview study with carers

This qualitative research focuses on carers’ experiences – exploring how healthcare professionals can support carers’ resilience. 

Purposeful sampling led to semi-structured interviews being undertaken with 14 carers supporting people with a non-curable cancer diagnosis. A text condensation thematic analysis was used.

There were four key findings which supported resilience.

Carers needed to be seen as individuals, being 'welcome, respected, and paid attention to.' This personal interaction was rated higher than the availability of palliative care provision. The carers reported the importance of information and communication regarding illness, prognosis and death being available, as well as open discussion to prepare carers for the experience. It was found that resilience can be better fostered when a good carer-cared for relationship is enabled. 

The authors recommend the systematic assessment of carer’s needs by healthcare professionals, to facilitate a trusting relationship with carers and promote resilience.

Roen I, Stifoss-Hanssen H, Grande G et al (2018) Palliative Medicine.1-9. doi: 10.1177/0269216318777656.


Health Education England (2018) Facing the Facts, Shaping the Future: Carers, self-care and volunteers reviews

NHS England (2018) Leading Change, Adding Value Team. Demonstrating a commitment to carers

Compiled by Pam Hodge, lecturer in practice learning, Middlesex University

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