Informal caregivers’ experiences of caring for people receiving dialysis: A mixed‐methods systematic review

Hoang, Van Lan; Green, Theresa; Bonner, Ann

doi:10.1111/jorc.12235

Cited by 89 publications

(119 citation statements)

References 41 publications

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“…We found that the difficulty of and time spent on caregiving tasks strongly predicted burden. Although caregiving tasks has been discussed as a major problem related to caregiver burden in previous qualitative studies (Low et al ; Walker et al ; Hoang et al ), this study demonstrated a strong association between caregiving tasks and burden. We have found that some specific caregiving tasks (i.e.…”

Section: Discussioncontrasting

confidence: 53%

“…A recent systematic review found that few studies have examined the burden of informal caregivers of people undergoing either haemodialysis or peritoneal dialysis (Hoang et al 2018). Informal caregiver burden has been reported as being between medium to high levels (Mollaoglu et al 2013;Avşar et al 2015;Cantekin et al 2016;Gilbertson et al 2018).…”

Section: Literature Reviewmentioning

confidence: 99%

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Informal caregivers of people undergoing haemodialysis: Associations between activities and burden

Hoang

Green

Bonner

2019

Journal of Renal Care

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SUMMARY Background Recent studies indicate that informal caregivers provide support to family members who are undergoing haemodialysis although the amount and type of activities provided and the burden of this is not well‐known. Objectives To analyse the burden and support activities of informal caregivers caring for adults receiving haemodialysis. Methods A cross‐sectional study recruited 178 adult informal caregivers (family members or close friends) of patients who had been undergoing haemodialysis for more than three months. Caregiver burden was measured by the Zarit Caregiver Burden Scale (ZCBS). Difficulty and time‐spent on caring tasks were assessed using the Oberst Caregiver Burden Scale (OCBS). Demographic characteristics were also collected. Results Most informal caregivers were female (55.6%) between 30 and 60 years of age (66%) and were a spouse of the person receiving haemodialysis. Overall, informal caregivers reported a high level of burden in caring (M = 40.15, standard deviation [SD] = 10.46) with 80.9% identifying the level as severe. However, the caring activities were perceived as slightly difficult (M = 24.5, SD = 8.81) and not requiring much time (M = 29.47, SD = 8.75). Predictors of greater informal caregiver burden were having their own health problems, greater time required to provide care, and doing more difficult tasks (R2 = 0.43, p < 0.01). Conclusion While the caregiving activities were not reported to take much time, there was a high level of burden on informal caregivers. Renal nurses are ideally placed to assess for caregiver burden and to provide education and support to them.

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Section: Discussioncontrasting

confidence: 53%

Section: Literature Reviewmentioning

confidence: 99%

Informal caregivers of people undergoing haemodialysis: Associations between activities and burden

Hoang

Green

Bonner

2019

Journal of Renal Care

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“…However, these treatments are highly demanding and involve life‐long therapy schedules, readjustments for dietary and fluid restrictions, polymedication protocols, and follow‐up consults . Consequently, this often translates into a significant burden for the patient and for their family members who constantly need to readapt their personal, familiar, social, and professional activities to fit dialysis requirements …”

Section: Introductionmentioning

confidence: 99%

Social support and treatment adherence in patients with end‐stage renal disease: A systematic review

Sousa

Ribeiro

Paúl

et al. 2019

Seminars in Dialysis

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Successful dialysis in end‐stage renal disease (ESRD) largely depends on the patients’ ability to adhere to several clinical requirements and life‐style changes. Social support has been consistently linked to better health outcomes in a number of chronic diseases. The current study presents a systematic review of the literature on the relationship between social support and treatment adherence in ESRD. The search was performed on Web of Science, PsycInfo, ScienceDirect, and Scopus from January 19 to May 15, 2019. Two hundred and twenty‐four records were identified. After quality assessment, 17 studies were included for qualitative synthesis. This review comprised a total of 2362 patients. Most patients were on hemodialysis (97.5%) for an average of 58.2 months. Results suggested an overall pattern of mixed findings regarding the association between social support and treatment adherence. Adherence to fluid restrictions was the type of adherence with more significant associations with social support (63%). Mixed results were found for adherence to dialysis sessions (50%) and to medication (50%). Associations between adherence to diet restrictions and social support were found in 44% of the included studies. No significant associations were found between social support and adherence to follow‐up consults. All of the included studies combining several types of adherence into an overall score found significant associations with social support. Findings suggested that it might be particularly beneficial to focus future research and clinical efforts toward social support from family, significant others, and health professionals, to improve patient's with ESRD treatment adherence.

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“…The costs of the home-based intervention and the quality assurance will be estimated on the basis of the current practice in the implementation. Informal care costs will be estimated from the literature 19. The costs of the intervention are recorded per centre.…”

Section: Methods and Designmentioning

confidence: 99%

Cost-effectiveness of a home-based group educational programme on renal replacement therapies: a study protocol

et al. 2019

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IntroductionLiving donor kidney transplantation (LDKT) is the optimal treatment for most patients with end-stage renal disease (ESRD). However, there are numerous patients who cannot find a living kidney donor. Randomised controlled trials have shown that home-based education for patients with ESRD and their family/friends leads to four times more LDKTs. This educational intervention is currently being implemented in eight hospitals in the Netherlands. Supervision and quality assessment are being employed to maintain the quality of the intervention. In this study, we aim to: (1) conduct a cost-effectiveness analysis of the educational programme and its quality assurance system; (2) investigate the relationship between the quality of the implementation of the intervention and the outcomes knowledge, communication and LDKT activities; and (3) investigate policy implications.Methods and designPatients with ESRD who do not have a living kidney donor are eligible to receive the home-based educational intervention. This is carried out by allied health transplantation professionals and psychologists across eight hospitals in the Netherlands. The cost-effectiveness analysis will be conducted with a Markov model. Cost data will be obtained from the literature. We will obtain the quality of life data from the patients who participate in the educational programme. Questionnaires on knowledge and communication will be used to measure the outcomes of the programme. Data on LDKT activities will be obtained from medical records up to 24 months after the education. A protocol adherence measure will be assessed by a third party by means of a telephone interview with the patients and the invitees.Ethics and disseminationEthical approval was obtained through all participating hospitals. Results will be disseminated through peer-reviewed publications and scientific presentations. Results of the cost-effectiveness of the educational programme will also be disseminated to the Dutch National Health Care Institute.Trial registration numberNL6529

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Informal caregivers’ experiences of caring for people receiving dialysis: A mixed‐methods systematic review

Abstract: This review substantiates that caregiver burden is due to the unrelenting nature of complex dialysis-specific activities although resilience often develops. Additional research is necessary to understand social support in this context and how health teams can assist caregivers further.

Cited by 89 publications

References 41 publications

Informal caregivers of people undergoing haemodialysis: Associations between activities and burden

Informal caregivers of people undergoing haemodialysis: Associations between activities and burden

Social support and treatment adherence in patients with end‐stage renal disease: A systematic review

Cost-effectiveness of a home-based group educational programme on renal replacement therapies: a study protocol

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