Original Investigation
Dialysis
Patient and Caregiver Perspectives on Home Hemodialysis: A Systematic Review

https://doi.org/10.1053/j.ajkd.2014.10.020Get rights and content

Background

Although home hemodialysis (HD) is associated with better survival compared with hospital HD, the burden of treatment may be intensified for patients and their caregivers and deter patients from this treatment choice. We describe patient and caregiver perspectives and experiences of home HD to inform home HD programs that align with patient preferences.

Study Design

Systematic review of qualitative studies.

Setting & Population

Adults with chronic kidney disease and caregivers of both home and hospital dialysis patients who expressed opinions about home HD.

Search Strategy & Sources

MEDLINE, EMBASE, PsycINFO, CINAHL, and reference lists were searched to October 2013.

Analytical Approach

Thematic synthesis.

Results

24 studies involving 221 patients (home HD [n = 109], hospital HD [n = 97], and predialysis [n = 15]) and 121 caregivers were eligible. We identified 5 themes: vulnerability of dialyzing independently (fear of self-needling, feeling unqualified, and anticipating catastrophic complications), fear of being alone (social isolation and medical disconnection), concern of family burden (emotional demands on caregivers, imposing responsibility, family involvement, and medicalizing the home), opportunity to thrive (re-establishing a healthy self-identity, gaining control and freedom, strengthening relationships, experiencing improved health, and ownership of decision), and appreciating medical responsiveness (attentive monitoring and communication, depending on learning and support, developing readiness, and clinician validation).

Limitations

Non-English articles were excluded.

Conclusions

Patients and caregivers perceive that home HD offers the opportunity to thrive; improves freedom, flexibility, and well-being; and strengthens relationships. However, some voice anxiety and fear about starting home HD due to the confronting nature of the treatment and isolation from medical and social support. Acknowledging and addressing these apprehensions can improve the delivery of predialysis and home HD programs to better support patients and caregivers considering home HD.

Section snippets

Methods

We followed the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) framework.22

Literature Search

The electronic search yielded 1,110 citations, of which 24 studies involving at least 221 patients (chronic kidney disease stages 4-5 predialysis [n = 15], hospital HD [n = 97], and home HD [n = 109]) and 121 caregivers of both home and hospital HD patients were eligible (Fig 1).

Comprehensiveness of Reporting

The comprehensiveness of study reporting was variable (Table 2). Studies reported on 1 (4%) to 24 (100%) items. Participant selection strategy was described in 21 (88%) studies. Theoretical saturation, defined as when little

Discussion

Patients and caregivers weigh the potential benefits of home-based dialysis against their anxieties and fears when making choices about home HD. Patients describe initially lacking confidence about their own ability to master home HD and voice fears about being isolated from medical support, their vulnerability if a medical catastrophe were to occur, and anxiety about specific aspects of home HD, particularly inserting needles. Concerns about the burden that home HD placed on their family

Acknowledgements

Support: Ms Walker is supported by a Sydney University APA Scholarship, New Zealand Lotteries Health Research Grant, Maurice and Phyllis Paykel Trust, and the Hawke’s Bay Medical Research Fund. Ms Hanson is supported by a postgraduate scholarship from Kidney Health Australia. Dr Palmer is supported by a Rutherford Discovery Fellowship from the Royal Society of New Zealand. Dr Morton is supported by an Australian National Health and Medical Research Council (NHMRC) Early Career Researcher

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