Burden of Care and Quality of Life Among Caregivers for Adults Receiving Maintenance Dialysis: A Systematic Review

doi:10.1053/j.ajkd.2018.09.006

American Journal of Kidney Diseases

Volume 73, Issue 3, March 2019, Pages 332-343

https://doi.org/10.1053/j.ajkd.2018.09.006 Get rights and content

Rationale & Objective

Dialysis is a burdensome and complex treatment for which many recipients require support from caregivers. The impact of caring for people dependent on dialysis on the quality of life of the caregivers has been incompletely characterized.

Study Design

Systematic review of quantitative studies of quality of life and burden to caregivers.

Setting & Study Population

Caregivers of adults receiving maintenance dialysis.

Selection Criteria for Studies

The Cochrane Library, Embase, PsycINFO, CINAHL, PubMed, and MEDLINE were systematically searched from inception until December 2016 for quantitative studies of caregivers. Pediatric and non–English language studies were excluded. Study quality was assessed using a modified Newcastle-Ottawa scale.

Data Extraction

2 independent reviewers selected studies and extracted data using a prespecified extraction instrument.

Analytical Approach

Descriptive reports of demographics, measurement scales, and outcomes. Quantitative meta-analysis using random effects when possible.

Results

61 studies were identified that included 5,367 caregivers from 21 countries and assessed the impact on caregivers using 70 different scales. Most (85%) studies were cross-sectional. The largest identified group of caregivers was female spouses who cared for recipients of facility-based hemodialysis (72.3%) or peritoneal dialysis (20.6%). Caregiver quality of life was poorer than in the general population, mostly comparable with caregivers of people with other chronic diseases, and often better than experienced by the dialysis patients cared for. Caregiver quality of life was comparable across dialysis modalities.

Limitations

Heterogeneity in study design and outcome measures made comparisons between studies difficult and precluded quantitative meta-analysis. Study quality was generally poor.

Conclusions

Quality of life of caregivers of dialysis recipients is poorer than in the general population and comparable to that of caregivers of individuals with other chronic diseases. The impact of caring for recipients of home hemodialysis or changes in the impact of caring over time have not been well studied. Further research is needed to optimally inform dialysis programs how to educate and support caregivers.

Section snippets

Search Strategy and Inclusion Criteria

A prespecified search strategy (Item S1) was used to identify studies published before January 1, 2017, that reported the burden or QoL of caregivers of dialysis (facility HD, home HD, or PD) patients. Electronic databases including The Cochrane Library, Embase, PsycINFO, CINAHL, PubMed, and MEDLINE were systematically searched with an English language restriction. Unpublished studies were identified, when possible, by abstracts of conference proceedings, as well as reference lists of relevant

Literature Search and Study Characteristics

The search strategy yielded 1,072 articles, of which 86 underwent full-text review (Fig 1). Another 25 were excluded, leaving 61 papers meeting the inclusion/exclusion criteria (Tables 1 and S1). There were 17 studies published before 200024, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40 and 44 from 2000 to December 2016.17, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66, 67, 68, 69, 70, 71, 72, 73, 74, 75, 76, 77, 78, 79,

Discussion

This systematic review has found that caregiver QoL and burden is worse than in the general population and comparable to caregivers of patients with other chronic diseases. Depression is less common than among the cared for dialysis patients and comparable or slightly greater than for the general population. Furthermore, the impact on caregiving for facility HD patients is similar to that of PD patients. QoL is better for caregivers of transplant recipients than dialysis patients.

Despite the

Article Information

Authors’ Full Names and Academic Degrees

Elise L. Gilbertson, MBBS(Hons), Rathika Krishnasamy, PhD, Celine Foote, PhD, Alice L. Kennard, MBBS(Hons), Meg J. Jardine, PhD, and Nicholas A. Gray, MBBS.

Authors’ Contributions

Research idea and study design: NAG, MJJ; data acquisition: ELG, CF, ALK, NAG; data analysis/interpretation: RK, NAG, ELG; statistical analysis: RK; supervision or mentorship: NAG, RK, MJJ. Each author contributed important intellectual content during manuscript drafting or revision and accepts accountability for the overall work by ensuring

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Original InvestigationBurden of Care and Quality of Life Among Caregivers for Adults Receiving Maintenance Dialysis: A Systematic Review

Rationale & Objective

Study Design

Setting & Study Population

Selection Criteria for Studies

Data Extraction

Analytical Approach

Results

Limitations

Conclusions

Section snippets

Search Strategy and Inclusion Criteria

Literature Search and Study Characteristics

Discussion

Article Information

Authors’ Full Names and Academic Degrees

Authors’ Contributions

Kidney Int

Adv Chronic Kidney Dis

Adv Renal Replac Ther

Am J Kidney Dis

Soc Sci Med

J Chronic Dis

Am J Kidney Dis

Am J Kidney Dis

Gen Hosp Psychiatry

Am J Kidney Dis

Transplant Proc

Transplant Proc

Am J Kidney Dis

Strain among caregivers: a study of experience in the United States

Gerontologist

Caregiver burden and depressive symptoms: analysis of common outcomes in caregivers of elderly patients

J Aging Health

Caregiving as a risk factor for mortality: the Caregiver Health Effects Study

JAMA

Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial

Cancer

Psychological, social, and health consequences of caring for a relative with senile dementia

J Am Geriatr Soc

Family Caregiving and Out-of-Pocket Costs: 2016 Report

Social support and subsequent mortality among patients with end-stage renal disease

J Am Soc Nephrol

The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies

BMJ

The quality of life of patients with end-stage renal disease

N Engl J Med

Quality of life and physical function in older patients on dialysis: a comparison of assisted peritoneal dialysis with hemodialysis

Clin J Am Soc Nephrol

US Renal Data System 2017 Annual Data Report: epidemiology of kidney disease in the United States

Am J Kidney Dis

UK Renal Registry 17th Annual Report: chapter 1 UK renal replacement therapy incidence in 2013: national and centre-specific analyses

Nephron

The experiences of loneliness, depression, and social support of Turkish patients with continuous ambulatory peritoneal dialysis and their caregivers

J Clin Nurs

A systematic review and meta-analysis of utility-based quality of life in chronic kidney disease treatments

PLoS Med

Critical evaluation of the Newcastle-Ottawa scale for the assessment of the quality of nonrandomized studies in meta-analyses

Eur J Epidemiol

Prevalence of depression, depressive symptoms, and suicidal ideation among medical students: a systematic review and meta-analysis

JAMA

Levels and predictors of distress in home hemodialysis caregivers

Dial Transplant

Quality of life for spouses of CAPD patients

ANNA J

Assessment of marital relationships of hemodialysis patients

Am J Med Sci

Marital and family characteristics of home and hospital dialysis patients

Loss Grief Care

Psychosocial adjustment of the family caregiver: home hemodialysis as an example

Social Work Health Care

Stress, social support, and symptoms of depression in spouses of the medically ill

Int J Psychiatry Med

Personality variables in coping with the stress of a spouse's chronic illness

J Clin Psychol

Multi-dimensional assessment of the effects of dialysis on the marital relationship

Dissertation Abstracts International

The effect of ethnic origin on personality resources and psychophysiological health in a chronic stress situation: the case of spouses of dialysis patients

Israel J Psychiatry Relat Sci

Psychosocial adjustment of home hemodialysis, continuous ambulatory peritoneal dialysis and hospital dialysis patients and their spouses

Original Investigation
Burden of Care and Quality of Life Among Caregivers for Adults Receiving Maintenance Dialysis: A Systematic Review