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16 Effectiveness of interventions for informal caregivers of people with end-stage chronic illness: a systematic review
  1. K McGuigan1,
  2. C Carswell1,
  3. G Laurente1,
  4. Y Kuan2,
  5. M Yaqoob3,
  6. S Rej4,
  7. P Gilbert5,
  8. C McKeaveney1,
  9. C McVeigh1,
  10. C Tierney1,
  11. J Reid1,
  12. I Walsh6 and
  13. H Noble1
  1. 1School of Nursing and Midwifery, Queen’s University Belfast, Belfast, UK
  2. 2Western Health and Social Care Trust, Londonderry, UK
  3. 3Barts Health NHS Trust, London, UK
  4. 4Faculty of Medicine and Health Sciences, McGill University, Montréal, Canada
  5. 5Northern Ireland Kidney Patient Association, Belfast, UK
  6. 6School of Medicine, Dentistry and Biomedical Sciences, Queen’s University Belfast, Belfast, UK


Introduction End-stage chronic illness impacts not only patients but also their informal caregivers. Informal caregivers experience many challenges associated with their caring role, which can affect their psychological, physical and emotional wellbeing. Despite this, guidance on how to support informal caregivers of patients with end-stage, non-malignant, chronic conditions is lacking; with little evidence available on effective psychosocial interventions to address the needs of this group.

Aims This review will explore: a) What interventions exist for informal caregivers of adults with end-stage chronic illness? b) What evidence exists to support intervention effectiveness in improving psychosocial outcomes of informal caregivers?

Method The review follows PRISMA guidelines and is registered on the international Prospective Register of Systematic Reviews (PROSPERO) [CRD42021279151]. Four databases: Medline, CINAHL, EMBASE and PsycINFO were searched for relevant articles up to October 2020. Included studies involve: (1) adult, informal caregivers of individuals with end-stage chronic illness, (2) interventions targeting improved psychosocial outcomes of caregivers, (3) assessment of intervention efficacy via a minimum of pre-and-post measures.

Dissertations, conference abstracts and studies focused on: patient rather than caregiver outcomes; caregivers for children; qualitative outcomes, were excluded. Two reviewers screened studies for inclusion based on titles/abstracts and full texts with disagreements resolved by a third reviewer.

Results The narrative data synthesis reflects study design, comparison group, participant characteristics, recruitment strategy, intervention components, framework used, and outcomes. Description of key findings will be presented via data extraction table.

Conclusion This review explores interventions for informal caregivers of those with chronic illness at end-of-life. The review will elucidate the key components, underpinning theoretical frameworks, mechanisms and measures utilised in effective interventions to improve outcomes for caregivers.

Impact This study begins to build a much needed evidence base to inform intervention development to address the needs of these informal caregivers.

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