Caregiver burden in pediatric dialysis: application of the Paediatric Renal Caregiver Burden Scale

Bauer, Abbie; Blanchette, Eliza; Zimmerman, Cortney Taylor; Wightman, Aaron

doi:10.1007/s00467-021-05149-x

Cited by 15 publications

(5 citation statements)

References 39 publications

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“…Previous studies have demonstrated the physical, psychological, social, and financial burdens experienced by caregivers of children on dialysis from a qualitative perspective ( 5 , 6 , 22 – 28 ). To our knowledge, this study is the first to use PROMIS measures to evaluate caregiver experience in the pediatric dialysis population and is one of the first to use these tools in caregivers of any pediatric patient with chronic illness ( 29 , 30 ). Use of PROMIS measures in caregivers of children on chronic dialysis sheds light on targets for future interventions to improve both caregiver and patient quality of life.…”

Section: Discussionmentioning

confidence: 99%

“…CKD Stage 5D requiring chronic dialysis is a rare outcome in children. Although our cohort is small, it is sizeable for a single pediatric dialysis center and represents a more diverse population than other published works ( 29 ). Further research into the patient and caregiver experience on dialysis should be explored through a multicenter study design to adequately power these results.…”

Section: Discussionmentioning

confidence: 99%

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When Dialysis “Becomes Life”: Pediatric Caregivers' Lived Experiences Obtained From Patient-Reported Outcomes Measures

et al. 2022

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IntroductionQualitative research reveals significant caregiver impact resulting from managing children requiring chronic dialysis but offers few quantitative measures of their lived experiences.Materials and MethodsThis cross-sectional study included 25 caregivers of children on chronic peritoneal dialysis (PD) and hemodialysis (HD) enrolled from 2018 to 2019 at a large pediatric dialysis program in the U.S.Patient Reported Outcomes Measures Information System (PROMIS) measures and free text commentary were collected and analyzed to evaluate the self-reported impact and wellbeing of these caregivers.ResultsAmong all dialysis modalities, caregivers' positive affect (43.4 ± 10) and general life satisfaction (45.1 ± 11.5) were significantly lower than the general adult population. Compared with HD caregivers, PD caregivers demonstrated significantly more fatigue and sleep disturbance and less positive affect and life satisfaction. Amongst HD caregivers, sleep disturbance, positive affect, and meaning/purpose differed significantly from the general population. Analyses of text commentary revealed that caregivers also expressed the feelings of loss, importance of knowing the impact of dialysis prior to initiation, need for a support group, and value of home nursing.ConclusionsCaregivers of children on chronic dialysis had significantly poorer self-rated health and wellbeing compared with the general adult population. This may be due in part to their feelings of social isolation. Our findings highlight opportunities to improve caregivers' lived experiences.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

When Dialysis “Becomes Life”: Pediatric Caregivers' Lived Experiences Obtained From Patient-Reported Outcomes Measures

et al. 2022

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“…A recent study by Erez et al [48] applied PROMIS measures to evaluate the wellbeing of caregivers of children on dialysis, and consistent with prior research [49–55], found worse health and life satisfaction in those caregivers as compared to the general adult population.…”

Section: Centering the Child And Family Perspectivementioning

confidence: 54%

“…Novel therapeutic approaches in neph and hypertension research [49][50][51][52][53][54][55], found worse health and life satisfaction in those caregivers as compared to the general adult population.…”

Section: Key Pointsmentioning

confidence: 99%

Enabling flourishing: novel approaches in palliative medicine for children with advanced kidney disease

House

Wightman

2022

Current Opinion in Nephrology &Amp; Hypertension

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Purpose of reviewPaediatric kidney disease results in considerable burden on children and their families. Paediatric palliative care is a holistic, family-centred care approach intended to enable flourishing and address the many impediments to life participation which advanced kidney disease can impose. To date, palliative care resources have been underutilized in paediatric nephrology. This review will highlight recent literature targeting the engagement and life participation of children with advanced kidney disease through implementation of novel palliative care approaches and propose directions for future research.Recent findingsChildren with advanced kidney disease and their families highly value incorporation of their perspectives, particularly on life participation, within care plan development; but what it means to participate in life can be variable, and clinicians need improved tools to ascertain and incorporate these perspectives. Novel palliative care interventions developed for application in comparable disease states offer potential opportunities for paediatric nephrologists to support this goal.SummaryChildren with advanced kidney disease and their families will benefit from incorporation of their perspectives and values, facilitated by palliative interventions.

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“…This is surprising as the course and scope of CKD can differ markedly from other pediatric illnesses. For example, peritoneal dialysis or hemodialysis can demand daily treatment lasting several hours or overnight therapy [7]. While diverse pediatric chronic illnesses share some characteristics [8,9], it is important to understand the specific contexts that families experience in order to design effective support programs.…”

Section: Introductionmentioning

confidence: 99%

A scoping review of the experiences and well-being of siblings of children with chronic kidney disease: implications for practice and research

et al. 2022

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Background Children with chronic kidney disease (CKD) and their families deal with challenging circumstances. While numerous studies have shown that both patients and parents in these families can experience a variety of challenges and concerns, the experience of siblings is less well understood. The focus of this scoping review was on research addressing the experiences and well-being of siblings of children with CKD. Methods Following scoping review methodology, five databases were searched for peer-reviewed research or graduate theses published in English that addressed the experience or well-being of siblings aged 25 years or younger (biological, step or foster) of children with CKD; studies from any year or location were included. Two independent coders identified relevant studies. Findings were summarized and synthesized. Results Of the 2990 studies identified, 19 were chosen for full text review and eight fit the inclusion criteria. Five of the selected studies were qualitative, two were quantitative and one used mixed-methods. Four broad themes across studies were identified including family functioning, significant relationships, psychological well-being, and coping strategies. While there was some convergence between qualitative and quantitative findings, these linkages were weak. Conclusions Several unmet needs of siblings were uncovered by this review. Sibling perceptions of differential parental treatment and desire for information about CKD emerged as priorities for practice. Using a strength-based approach in order to better understand sibling experiences and well-being was also recommended for future research.

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Caregiver burden in pediatric dialysis: application of the Paediatric Renal Caregiver Burden Scale

Cited by 15 publications

References 39 publications

When Dialysis “Becomes Life”: Pediatric Caregivers' Lived Experiences Obtained From Patient-Reported Outcomes Measures

When Dialysis “Becomes Life”: Pediatric Caregivers' Lived Experiences Obtained From Patient-Reported Outcomes Measures

Enabling flourishing: novel approaches in palliative medicine for children with advanced kidney disease

A scoping review of the experiences and well-being of siblings of children with chronic kidney disease: implications for practice and research

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