Life Participation in Parents of Children With CKD

Abstract

Background

The caregiver burden among parents of children with chronic kidney disease (CKD) is high and can impair their life participation, which may in turn have negative consequences on their children’s care and outcomes. We aim to describe effects on life participation in parents of children with CKD, from the perspectives of their children, health professionals, and the parents themselves.

Methods

We thematically analyzed data from the Standardized Outcomes in Nephrology—Children and Adolescents Initiative (SONG-Kids) life participation workshops involving children with childhood CKD, parents or caregivers, and health professionals, for content related to perspectives on life participation among parents of children with CKD.

Results

A total of 4 international consensus workshops were conducted (1 in-person in English and 3 online—2 in English and 1 in Spanish) with 171 participants, including 79 patients and parents or caregivers and 92 health professionals from 16 countries. Overall, 4 themes were identified—health priorities undermining ability to participate in activities and socialize; medical responsibilities conflicting with the nurturing parental role; impeding ability to work; and measuring and addressing life participation in parents of children with CKD.

Conclusion

Managing parental and disease-related responsibilities can impair life participation in parents of children with CKD, particularly in the areas of work and social activities. Strategies to identify and address parental life participation appear to be needed, which may include interventions to alleviate caregiver burden and distress.

Graphical abstract

Parents and caregivers of children with CKD can experience high burden responsibilities in managing their child’s health. Parents organize and accompany their children to medical appointments, administer treatment (such as nasogastric or gastrostomy tube feeding, strict fluid requirements, medications, and/or home dialysis), ensure adherence to dietary restrictions, and provide support for psychological and emotional challenges.1, 2, 3, 4 These responsibilities can trigger and exacerbate fatigue and stress, which can limit parents’ ability to participate in their meaningful activities including work, leisure and social activities, and family activities, such as caring for other children.^1,5, 6, 7 Parents of children with CKD have reported low quality of life, physical and daily functioning, general well-being, and subsequent impact on the family.⁸

Life participation, defined as the ability to meaningfully participate in family, social, work, and leisure activities, has been identified through the SONG Initiative as a critical outcome of importance, and to be assessed in all clinical trials involving children with CKD.⁹ The global SONG-kids initiative aims to establish core outcome sets and measures to be used in all trials in children with CKD.¹⁰ Each core outcome set includes at least 1 patient-reported outcome.^10,11 Although the concept of life participation is emerging, the life participation of parents of children with CKD is underreported and underrecognized. It moves beyond the concept of caregiver burden to acknowledge how life participation domains of family, leisure, work, and social activities are impaired and compromised by the responsibilities of caring for a child with CKD.^6,12 Life participation focuses on the ability to achieve activities within the domains of family, leisure, work and social, whereas the concept of caregiver burden focuses on stress or strain in providing care.^6,12

There is also a need to understand life participation in parents of children with CKD.¹³ Life participation of parents is often overlooked and not addressed, constrained by a limited capacity and unawareness of pressure along with treatment focus remaining on the patient, leaving the burden and life participation of families largely unrecognised.¹⁴ This report summarizes workshop discussions from patients with childhood CKD, parents or caregivers and health professionals on parental life participation.

Methods

We convened 4 multinational workshops in September, November, and December 2024 (1 in-person in English language and 3 online—2 in English and 1 in Spanish) involving children with CKD, their parents or caregivers, and health professionals. Participants were invited through the SONG network and the networks of the SONG-Kids Life Participation Expert Working Group. Participants included parents and caregivers of children with CKD or young adults with childhood CKD, as well as children with CKD and young adults with childhood CKD. Health professionals (such as nephrologist, nurses, dietitians, and researchers) with expertise or interest in CKD, and those holding advisory or leadership roles with regulatory agencies (US Food and Drug Administration), funding organizations (US Institutes of Health), professional societies (International Pediatric Nephrology Association), and registries were invited. In total, 171 participants attended, including 79 patients and parents or caregivers, and 92 health professionals from 16 countries (Australia, Austria, Bolivia, Canada, Chile, China, France, Germany, India, Lithuania, Mexico, New Zealand, Singapore, South Africa, South Korea, and United States of America). The first workshop included 14 patients or parents and 28 health professionals; the second workshop included 5 patients or parents and 15 health professionals; the third workshop included 10 patients or parents and 34 health professionals; and the final workshop included 54 patients or parents or caregiver and 31 health professionals.

These workshops were conducted as part of the SONG Initiative with the aim of establishing a core outcome measure for life participation in children with CKD. The workshop program and background materials were sent before the workshops. The workshops started with an overview of SONG-Kids and the concept of life participation, and the SONG life participation measure before breakout discussion groups (ranging from 8 to 17 participants). All breakout discussions were facilitated by a trained facilitator who followed a discussion guide. All discussions were audio recorded and then transcribed verbatim. After the discussions, all participants returned to the group where each group provided a 1-point summary and workshop chairs closed (JCC, MCc, ARo). All discussions were audio recorded and then transcribed verbatim. AH read the transcripts to identify preliminary concepts relating to parental life participation. Research triangulation was then used to further develop concepts into themes (AH, AJ, CG, AvZ). AH then entered the transcripts into HyperRESEARCH (software version 4.5.6; ResearchWare Inc, Randolph, MA) for line-by-line coding and analysis. Member checking occurred as the workshop report was circulated to all attendees and those unable to attend the workshop, who were invited to provide feedback and additional comments to ensure the report accurately reflects concepts expressed by participants. Where appropriate the feedback was integrated into the final report. A full list of attendees is provided in Supplementary File S1.

Results

We identified 4 themes relating to life participation of parents of children with CKD—health priorities undermining ability to participate in activities and socialize; medical responsibilities conflicting with the nurturing parental role; impeding ability to work; and measuring and addressing life participation in parents of children with CKD. Themes are described below with illustrative quotes provided in Table 1. Figure 1 depicts the relationship between the themes.

Table 1.

Selected illustrative quotes of each theme

Health priorities undermining ability to participate in activities and socialize

•“It's not just therefore how it [CKD] affects the child, it's how it affects the family, the entire family unit” (Health professional, Australia). •“What a normal setup would be around a family that would be able to provide my participation activities for the family and being held back in hospital or with a sick child. How that doesn't allow for that to happen for those opportunities to be created for the family to generate that play time, play time with other children from other families” (Health professional, Australia). •“It's so complex because sometimes suffering can either bring families together or completely tear them apart” (Patient, Australia). •“It would be helpful going into a treatment knowing that your life participation as a carer might bottom out completely” (Parent, Australia). •“If you've got a really young child with significant CKD, your life is very hard” (Health professional, Australia). •“Highest impact on the family and especially on the mom. So probably at least in our experience, sometimes dads are very involved, but usually the social impact is rather on the mother” (Health professional, France). •“(Dialysis) could affect our quality of life and our nightly rest” (Parent, Chile). •“Particularly in those younger years because they're [children with CKD] so dependent on everything from their parents, so that's who it's actually impacting on” (Health Professional, Australia).

Medical responsibilities conflicting with the nurturing parental role

•“Probably tougher on mom, because she was doing it. Whereas who knows what her stress levels [were due to the medical responsibilities] … she's not a trained nurse, so it's probably easier for some parents to go to the hospital” (Patient, Australia). •“For some families they can get up more than 10 times per night with own PD … we probably underevaluate the impact on pediatric CKD on families” (Health professional, France). •“It's so complex because sometimes suffering can either bring families together or completely tear them apart” (Patient, Australia).

Impeding ability to work

•“I asked for flexible work arrangements so I can work from home. So, I could do my work at home, do my caring activities, and also do my fun activities.” (Parent/health professional, Australia). •“Maybe I have caregiving responsibilities, multiple caregiving responsibilities. I have a job which does not allow me to do the things that I enjoy doing” (Parent/health professional, Australia). •“It could be the impact on family life and work life” (Health professional, France).

Measuring and addressing life participation in parents of children with CKD

•“Would there be another questionnaire for caregivers and outcomes? I'm sure that there's a huge burden to caregivers” (Health professional, New Zealand). •“[At] six months old, when you're talking about life participation you're talking about a carer's life participation with the child. Actually, that's really different" (Health professional, Australia). •“There could be an evaluation also on the parents [to measure] impact on family life and work life” (Health professional, France). •“It is good for us to measure (life participation of) family members who already have enough problems” (Caregiver, Chile). •“I do agree that capturing the family participation and dynamics and relationships in the family is really important because I think it is really challenging having someone with chronic kidney disease in your family, whether it's child or sibling, parent” (Health professional, Australia). •“If your child was just born and they have CKD. It's a huge step-up for them, all of a sudden, they're parenting not just a child but also a very sick child. Are their needs met? It's important for the parents to be heard in that” (Patient, Australia). •“Looking back, timely access to psychological support could have made a real difference—not just for me, but in how I supported my daughter through her illness” (Parent, Australia).

Figure 1.

Thematic schema. The thematic schema highlights the barriers to parental life participation, such as health priorities undermining ability to participate in activities and socialize; medical responsibilities conflicting with the nurturing parental role; impeding on ability to work; and their relationship to strategies to address parental life participation by measuring and addressing life participation in parents of children with CKD.

Health Priorities Undermining Ability to Participate in Activities and Socialize

The demands of caring for a child with CKD meant that parents had to limit family and social activities, and consequently they lost their sense of normality. For example, “Particularly in those younger years because they're [children with CKD] so dependent on everything from their parents, so that's who it's actually impacting on”, and it “doesn’t allow for opportunities to be created for the family to generate that play time” (Health professional, Australia). Some parents found that the grueling dialysis regimen drained their energy and capacity to participate in activities—“(Dialysis) could affect our quality of life and our nightly rest” (Parent, Chile).

Medical Responsibilities Conflicting With the Nurturing Parental Role

Participants acknowledged that parents juggle multiple responsibilities in this dual role as a parent and caregiver, including disease-related responsibilities, such as medication, treatment, and appointments, along with preserving a nurturing parental relationship—“Who knows what her stress levels [were due to the medical responsibilities]… she's not a trained nurse, so it's probably easier for some parents to go to the hospital” (Patient, Australia).

Impeding Ability to Work

Caring for a child with CKD made it difficult for parents to maintain their work responsibilities and achieve career goals—“it could be the impact on… work life” (Health professional, France). Parents identified strategies that helped them to manage family responsibilities while maintaining their career—“I asked for flexible work arrangements so I can work from home, do my caring activities, and also do my fun activities.” (Parent/health professional, Australia).

Measuring and Addressing Life Participation in Parents of Children with CKD

Participants identified an opportunity to develop and validate an instrument, potentially the SONG-life participation instrument, to assess life participation in parents—“There could be an evaluation also on the parents… [to measure] impact on family life and work life” (Health professional, France). Subsequently, following an assessment of life participation, areas of need and support could be identified—“Are their needs met? It's important for the parents to be heard in that” (Patient, Australia). For example, psychological support to promote positive mental health in parents and their child—“Looking back, timely access to psychological support could have made a real difference—not just for me, but in how I supported my daughter through her illness” (Parent, Australia).

Discussion

Parents of children with CKD bear a substantial medical responsibility in caring for their child, which can include training and administering invasive treatments, which can consequently impair their ability to participate in meaningful activities, including socializing and work. Assessing and addressing parental life participation was regarded as necessary for the health and well-being of the child with CKD and the whole family.

Previous studies have also found that parents of children with CKD encountered challenges in adjusting to the clinical environment, medicalized parent-child relationships, and disrupted family norms, and highlighted the need for coping strategies and support structures.¹² In addition to the challenges experienced by parents, accessing support for emotional, practical, and financial challenges is another barrier to facilitating parental life participation.¹⁵ Caregivers have reported difficulty navigating support systems and relied on themselves to access support; however, the study also found that the support systems were able to alleviate pressure, which may help facilitate life participation by addressing time consuming barriers.¹⁵ Work participation is crucial to prevent accumulating socioeconomic disadvantage. Employers can also play a role to support employees who are caregivers of medically complex relatives though paid and unpaid leave, flexible schedules, and support services.¹⁶ Additional potential interventions include comprehensive income support, employment security, flexible work arrangements, comprehensive universal health care, and timely reimbursement of cost (e.g., transport, home modifications, health care costs).¹⁷

The Caregiver well-being, Advanced care planning, Respite, and Education Framework provides a guide for health professionals to address the needs of caregivers.¹⁸ This involves becoming aware of the needs, becoming comfortable addressing caregiver needs, and suggesting interventions to reduce caregiver burden.¹⁸ Assessment of life participation could be implemented in routine clinical practice and recorded in clinician or electronic health records.¹⁹ Following this, goal-setting activities could then be used to identify strategies to improve life participation in parents and recognize the importance of multidisciplinary care by referring to an appropriate service, such as a social worker, patient navigator, psychologist, occupational therapist, or respite care.¹⁹

There are also various validated instruments that can be used to assess caregiver well-being and burden, some of which include the Pediatric Renal Caregiver Burden Scale, Zarit Burden Interview, 36-item Short Form Survey, Caregiver Burden Inventory, Caregiver Strain Index, and the Caregiver Subjective and Objective Burden Scale.^20,21 The Pediatric Renal Caregiver Burden Scale is a 51-item instrument designed to measure the physical, emotional, social, and financial domains, as well as identity and role, treatment responsibilities and contact with hospital or medical staff.²¹ A systematic review on the burden of care and quality of life among caregivers for adults receiving maintenance dialysis in largely observational studies with one randomized control trial, identified 70 measures, with the Zarit Burden Interview was found to be the most frequently used in 13 studies.¹ In addition, a systematic review of instruments assessing caregiver burden in kidney failure in cross-sectional, methodological, and mixed methods studies found 21 caregiver instruments were used with the Zarit Burden Interview, Caregiver Burden Scale, and Beck Depression Inventory as the most frequently used.²² However, there are no instruments specifically assessing life participation in parents of children with CKD.

There are opportunities for interventions to be effective and improve life participation for parents of children with CKD. A systematic review of support interventions for caregivers of people with CKD identified only 3 studies, of which all the interventions were focused on education to improve caregiver knowledge and specifically for caregivers of people receiving dialysis or caregivers of pediatric transplant recipients.²³ A randomized trial found that a 6-month peer monitoring intervention for caregivers of patients with CKD, caregiver burden decreased when compared with baseline.²⁴ A recent trial found that a patient navigator program could potentially ease the mental strain of disease among parents or caregivers, and alleviate family tensions and improve agency.²⁵ This highlights the limited support available to parents and caregivers to reduce burden and improve parental life participation, yet the potential for responsive interventions.

In our workshops, we involved patients, parents or caregivers and health professionals from a range of settings; however, we acknowledge transferability to countries and language groups not included in the workshop may be limited. Understanding regional context is needed along with further efforts which explicitly explore and measure parental life participation, in the hope to determine strategies to address parental life participation. Improving fragmented health systems is needed to facilitate access to adult psychological and other support services for parents particularly as the life participation of parents is not the primary focus of their child’s clinician. Improved parental life participation can be seen to relieve stress and strain from overwhelming a parental burden as activities in each domain of life participation may act as a positive coping mechanism. The need and benefits to supporting and improving parental life participation goes beyond the parent, it may also strengthen health and life participation outcomes for their child with CKD, as well as other family members including siblings. Further research into constructs and measures for parental life participation is needed. In addition, further research is needed to understand the life participation other caregivers, such as older siblings and grandparents who may also take on caregiving responsibilities and experience burden and distress.

Parents or caregivers of children with CKD, patients and health professionals recognized the burden of childhood CKD on parents which may disrupt life participation by impeding leisure, work, family, and social activities. Participants suggested assessing parental life participation to better address needs and provide support to facilitate improved life participation. Validating a measure specific for life participation for parents, such as the SONG-life participation measure may enable parental life participation to be identified, assessed, and measured. There is a need to codevelop programs and interventions to help improve the domains of life participation, including leisure, family, work, and social activities.

Appendix

Abigail Navarro, Aditi Sinha, Alejandra Abigail Landana Amador, Alejandro Grandon, Alicia Neu, Aliza Thompson, Allison Dart, Amalia Welsh, Amanda Dickens, Andrea Vogel, Angela Hidalgo, Angeles Castro, Anke Raaijmakers, Anna Francis, Antonieta Pasco, Antonia Cordera, Arturo Bermúdez, Augustina Jankauskiene, Belinda Vandepeer-Hamber, Brodie Rijsdijk, Caitlin Fox, Carla Carcamo, Carolay Yañez Mendez, Catalina Belen Ramirez Reyes, Cesar Montes, Chad Maidment, Chanel Prestidge, Charmaine Lok, Christoph Aufricht, Chunyan Wang, Connie Rhee, Cozumel Pruette, Cristian Leiva, Cristina Garmendia, Daisy Cardenas, Dalia Iracema Mendiola Ramirez, David Gonzalez, Debbie Gipson, Deborah Mendez, Delphine Nelson, Denisse Cotapos, Dhanusya Sivananthan, Dominik Juarez, Dorey Glenn, Doyle Strachan, Elizabeth Hendress, Elvia Daniela Fernandez Nava, Fernanda Baeza Reyes, Fernanda Gutierrez, Fernando Apaz, Gabriel Mendoza, Gladys Paola Reyes Ramirez, Glenda Moonsamy, Hector Reimil, Helen Coolican, Hong Xu, Hugh McCarthy, Hui Kim Yap, Ian Rijsdijk, Ieyesha Roberts, Ignacia Correa Heresmann, Ignacia Leiva Casa, Irita Spundzevičienė, Ilse Williams, Isaac Avila, Isabella de Souza, Isidora Fortunate Cavieres, Jacqueline Starbin, Jae II Shin, James Xu, Joana Heresmann, Joanne Jones, John Mahan, Jorge Bazaes, Jorge Gutierrez, Joseph Flynn, Julija Starkute, Jun Oh, Justin de Souza, Justine Bacchetta, Katherine Freire, Kenneth Wilkins, Kezia Hamber, Keia Sanderson, Kimberly Hollitt, Kirtida Mistry, Liz Strachan, Loreto Molina, Luca Torrisi, Ludvika Starkiene, Luis Bermúdez, Luis Felipe, Luis Villanueva, Luke McAuley, Madeleine Reicher, Maria Eugenia Tellez Gonzalez, María Luisa Ceballos, Mario Hamber, Martina Arce, Matias Valeria, Meda Spundzevičiūtė, Melissa Saavedra, Michelle Denburg, Mina Matsuda-Abedini, Nicholas Larkins, Nicola Rijsdijk, Noa Amir, Olivia Boyer, Patience Sigwadi, Paty Mendoza, Pia Catalina, Rachael Kermond, Raimundo Correa, Robert Gardos, Rafael Hernandez, Rafael Reimil Navarro, Rebecca Johnson, Regina Castro, Rodrigo Fortunate, Ronald Lopez, Sandra Amaral, Sarah Marokakis, Sean Kennedy, Sebastian Wolfenden, Simone Fitzgerald, Sofia Silva, Stephen Alexander, Stephen Cornish, Stephen Hooper, Steven McTaggart, Susan Samuel, Susana Rocha, Tannia Valenzuela Hidalgo, Thomas Forbes, Tia Williams, Valentina Flores Mendiola, Vanessa Chacin, Ximena Rossello, Yamila Rubio, and Yvonne Farquharson.

Disclosure

All the authors have no competing interests to disclose.

Supplementary Material

Supplementary File (PDF)

File S1. List of Workshop Attendees and Contributors.