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Home-based physical symptom management for family caregivers: systematic review and meta-analysis
  1. Daniel Eric Schoth1,
  2. Simone Holley1,
  3. Margaret Johnson2,
  4. Emma Stibbs1,
  5. Kate Renton3,4,
  6. Emily Harrop5,6 and
  7. Christina Liossi1,7
  1. 1Pain Research Laboratory, School of Psychology, University of Southampton, Southampton, UK
  2. 2Patient and Public Representative, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
  3. 3University Hospital Southampton NHS Foundation Trust, Southampton, UK
  4. 4Naomi House & Jacksplace, Winchester, UK
  5. 5Helen & Douglas House, Oxford, UK
  6. 6Oxford University Hospitals NHS Foundation Trust, John Radcliffe Hospital, Oxford, UK
  7. 7Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
  1. Correspondence to Professor Christina Liossi; cliossi{at}soton.ac.uk

Abstract

Background Patients with life-limiting conditions are often cared for at home by family, typically without adequate training to carry out the challenging tasks performed. This systematic review assessed the efficacy of interventions designed to help family caregivers manage pain and other symptoms in adults and children with life-limiting conditions at home.

Methods A systematic search was performed on seven databases. A narrative synthesis was conducted, along with a meta-analysis comparing outcomes in those who received an intervention to those who did not, or to preintervention scores.

Results 84 eligible studies were identified. Significant improvements in pain and fatigue in patients with cancer were found compared with patients in the control group and baseline. Caregivers of patients with cancer receiving an intervention, compared with the control group caregivers, showed significant improvements in self-efficacy and active coping and lower avoidant coping. This group also showed significant improvements in burden, self-efficacy, anxiety and depression, and decreases in avoidant coping pre- to post intervention. Patients with dementia whose caregivers received an intervention showed significantly reduced pain intensity and improvements in quality of life pre- to post intervention. Caregivers of patients with dementia showed significantly reduced distress pre- to post intervention. No beneficial effects were found for caregivers of patients with Parkinson’s disease or heart failure, although only limited analyses could be performed.

Conclusions Interventions targeting family caregivers can improve both patient symptoms and caregiver outcomes, as demonstrated in cancer and dementia care. Future mixed-methods research should collect data from caregiver and patient dyads, identifying key intervention components. There is also need for more studies on caregivers of paediatric patients.

  • Family management
  • Symptoms and symptom management
  • Home Care

Data availability statement

Meta-analysis data is available from the corresponding author upon reasonable request.

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Data availability statement

Meta-analysis data is available from the corresponding author upon reasonable request.

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Footnotes

  • X @drkateren, @ChristinaLiossi

  • Contributors CL is the chief investigator of the PARAMOUNT study and conceived the project, designed the protocol and takes overall responsibility for the conduct of this systematic review and meta-analysis. CL is responsible for the overall content and is the guarantor. DES and SH planned and designed the study protocol, planned and performed the data extraction and statistical analyses, and wrote drafts of the manuscript. ES performed data extraction, contributed to data analysis and interpretation, and assisted in manuscript write-up. KR, MJ and EH provided critical insights. All authors have approved and contributed to the final written manuscript.

  • Funding This review is supported by Great Ormond Street Children’s Charity (Grant number: V5118).

  • Competing interests None declared.

  • Patient and public involvement statement Caregivers were involved as research partners in all aspects of the systematic review, including identifying the research question and identifying the need for the systematic review.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Preregistration The protocol for this systematic review was registered on PROSPERO (ID: CRD42020169950)

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.