Skip to main content

Advertisement

SpringerLink
Log in

Caregiver perspectives of dialysis initiation for children with kidney disease: a qualitative study

  • Original Article
  • Published:
Pediatric Nephrology Aims and scope Submit manuscript

Abstract

Background

To better support family-centered care surrounding dialysis initiation, greater understanding of caregiver experience is necessary.

Methods

Using thematic analysis, we conducted a secondary analysis of semi-structured interview data from a qualitative study of caregivers of children receiving dialysis recruited from 3 pediatric centers. Prominent themes in caregiver experience of caring for a child initiating dialysis were identified.

Results

Thirty-five caregivers participated. Three major themes emerged from qualitative analysis: (1) parenting disrupted - caregivers experienced an acute disruption in their parenting role due to the unexpected, emergent circumstances and vast information accompanying their child’s diagnosis; (2) redefining parenting - caregivers sought to reestablish their innate parental role and foster their evolving medical provider role through reassurance that their child could survive, communication with the medical team, and engaging in care plan development; and (3) leveraging dual identities - to positively impact their child’s experience and enable flourishing, caregivers leveraged their established caregiver role and newly realized medical provider role through voicing their perspectives, watching over their child’s care, and preparing for future changes in their child’s health. If caregivers’ evolution was not nurtured and enabled, acute fluctuations in their child’s care could contribute to future disruption and need to restore their parental role. However, if caregiver development was fostered, caregivers acquired increased ability to prepare for vacillations in their child’s care.

Conclusions

Improving delivery of family-centered care and support of caregivers at dialysis initiation will require directed efforts by nephrology care teams to foster caregiver evolution and resilience and respond to the family’s changing experience of kidney disease.

Graphical abstract

A higher resolution version of the Graphical abstract is available as Supplementary information

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

Data availability

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

References

  1. Splinter A, Tjaden LA, Haverman L, Adams B et al (2018) Children on dialysis as well as renal transplanted children report severely impaired health-related quality of life. Qual Life Res 27:1445–1454

    Article  Google Scholar 

  2. Tjaden LA, Grootenhuis MA, Noordzij M, Groothoff JW (2016) Health-related quality of life in patients with pediatric onset of end-stage renal disease: state of the art and recommendations for clinical practice. Pediatr Nephrol 31:1579–1591

    Article  Google Scholar 

  3. Varni JW, Limbers CA, Burwinkle TM (2007) Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 16:43–58

    Article  Google Scholar 

  4. Selewski DT, Massengill SF, Troost JP, Wickman L et al (2014) Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study. Pediatr Nephrol 29:2347–2356

    Article  Google Scholar 

  5. Wightman A (2020) Caregiver burden in pediatric dialysis. Pediatr Nephrol 35:1575–1583

    Article  Google Scholar 

  6. Velasco J, Ferraris V, Eymann A, Coccia PA et al (2020) Quality of life among siblings of patients with chronic conditions. Arch Argent Pediatr 118:252–257

    PubMed  Google Scholar 

  7. Agersov H, Thiesson HC, Pedersen BD (2019) Everyday life experiences in families with a child with kidney disease. J Ren Care 45:205–211

    Article  Google Scholar 

  8. Bauer A, Blanchette E, Taylor Zimmerman C, Wightman A (2020) Caregiver burden in pediatric dialysis: application of the Paediatric Renal Caregiver Burden Scale. Pediatr Nephrol 36:3945–3951. https://doi.org/10.1007/s00467-021-05149-x

    Article  Google Scholar 

  9. Medway M, Tong A, Craig JC, Kim S et al (2015) Parental perspectives on the financial impact of caring for a child with CKD. Am J Kidney Dis 65:384–393

    Article  Google Scholar 

  10. Darwish MM, Hassan SH, Taha SF, El-Megeed HS et al (2020) Family impact and economic burden among caregivers of children with chronic kidney disease in Assuit, Egypt. J Egypt Public Health Assoc 95:27–34

    Article  Google Scholar 

  11. Ong ZH, Ng CH, Tok PL, Kiew MJX et al (2021) Sources of distress experienced by parents of children with chronic kidney disease on dialysis: a qualitative systematic review. J Pediatr Nurs 57:11–17

    Article  Google Scholar 

  12. Wightman A, Taylor Zimmerman C, Neul S, Lepere K et al (2019) Caregiver experience in pediatric dialysis. Pediatrics 143:e20182102

    Article  Google Scholar 

  13. Tong A, Lowe A, Sainsbury P, Craig JC (2010) Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study. Child Care Health Dev 36:549–557

    Article  CAS  Google Scholar 

  14. Favel K, Dionne JM (2020) Factors influencing the timing of initiation of renal replacement therapy and choice of modality in children with end-stage kidney disease. Pediatr Nephrol 35:145–151

    Article  Google Scholar 

  15. Saban JA, Zappitelli M, Samuel SM, Sood MM et al (2016) Perceptions of pediatric nephrologists regarding timing of dialysis initiation in children in Canada. Can J Kidney Health Dis 3:31. https://doi.org/10.1186/s40697-016-0123-8

    Article  PubMed  PubMed Central  Google Scholar 

  16. Neul SK (2012) Medical traumatic stress symptoms in pediatric patients on dialysis and their caregivers: a pilot study. Nephrol Nurs J 39:483–489

    PubMed  Google Scholar 

  17. Kuo DZ, Houtrow AJ, Arango P, Kuhlthau KA et al (2012) Family-centered care: current applications and future directions in pediatric health care. Matern Child Health J 16:297–305. https://doi.org/10.1007/s10995-011-0751-7

    Article  PubMed  Google Scholar 

  18. Committee on Hospital Care and Institute for Patient- and Family-Centered Care (2012) Patient- and family-centered care and the pediatrician’s role. Pediatrics 129:394–404. https://doi.org/10.1542/peds.2011-3084

    Article  Google Scholar 

  19. Cohen C (1987) Ethical and legal considerations in the care of the infant with end-stage renal disease whose parents elect conservative therapy. Pediatr Nephrol 1:166–171

    Article  CAS  Google Scholar 

  20. Tong A, Lowe A, Sainsbury P, Craig JC (2008) Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies. Pediatrics 121:349–360

    Article  Google Scholar 

  21. Mieto FS, Bousso RS (2014) The mothers’ experiences in the pediatrics hemodialysis unit. J Bras Nefrol 36:460–468

    Article  Google Scholar 

  22. Geense WW, van Gaal BGI, Knoll JL, Cornelissen EAM et al (2017) The support needs of parents having a child with a chronic kidney disease: a focus group study. Child Care Health Dev 43:831–838

    Article  CAS  Google Scholar 

  23. Coburn SS, Callon WA, Eakin MN, Pruette CS et al (2020) Evaluating provider communication in pediatric chronic kidney disease care using a global coding system. Patient Educ Couns 103:1358–1365

    Article  Google Scholar 

  24. Hanson CS, Craig JC, Tong A (2017) In their own words: the value of qualitative research to improve the care of children with chronic kidney disease. Pediatr Nephrol 32:1501–1507. https://doi.org/10.1007/s00467-016-3526-y

    Article  PubMed  Google Scholar 

  25. Dedoose version 7.0.23 (2017) web application for managing, analyzing, and presenting qualitative and mixed method research data. Los Angeles, CA: SocioCultural Research Consultants, LLC. Available at:www.dedoose.com. Accessed 20 April 2021

  26. Miles MB, Huberman AM, Saldaña J (2020) Qualitative data analysis, 4th edn. Sage Publications, Thousand Oaks

    Google Scholar 

  27. Green J, Willis K, Hughes E, Small R et al (2007) Generating best evidence from qualitative research: the role of data analysis. Aust N Z J Public Health 31:545–550. https://doi.org/10.1111/j.1753-6405.2007.00141.x

    Article  PubMed  Google Scholar 

  28. Creswell JW, Poth CN (2018) Qualitative inquiry and research design, 4th edn. Sage Publications, Thousand Oaks

    Google Scholar 

  29. Crittenden MR, Waechter E, Mikklesen CA (1977) Taking it day by day: when children undergo hemodialysis and renal transplantation. Child Today 6:6–35

    CAS  PubMed  Google Scholar 

  30. Rosenberg AR, Baker KS, Syrjala KL, Back AL, Wolfe J (2013) Promoting resilience among parents and caregivers of children with cancer. J Palliat Med 16:645–652. https://doi.org/10.1089/jpm.2012.0494

    Article  PubMed  PubMed Central  Google Scholar 

  31. Gutman T, Hanson CS, Bernays S, Craig JC et al (2018) Child and parental perspectives on communication and decision making in pediatric CKD: a focus group study. Am J Kidney Dis 72:547–559. https://doi.org/10.1053/j.ajkd.2018.05.005

    Article  PubMed  Google Scholar 

  32. House TR, Wightman A (2020) Adding life to their years: the current state of pediatric palliative care in CKD. Kidney 360 https://doi.org/10.34067/KID.0000282021

  33. Dionne JM, d’Agincourt-Canning L (2015) Sustaining life or prolonging dying? Appropriate choice of conservative care for children in end-stage renal disease: an ethical framework. Pediatr Nephrol 30:1761–1769. https://doi.org/10.1007/s00467-014-2977-2

    Article  PubMed  Google Scholar 

  34. Grünberg J (2010) “Pedogeriatrics”: a pediatric nephrologist’s outlook on common challenges facing pediatric and geriatric nephrologists. Int Urol Nephrol 42:253–257. https://doi.org/10.1007/s11255-009-9593-2

    Article  PubMed  Google Scholar 

  35. Feudtner C, Kang TI, Hexem KR, Freidichsdorf SJ et al (2011) Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics 127:1094–1101

    Article  Google Scholar 

  36. Keefer P, Lehmann K, Shanley M, Woloszyk T et al (2017) Single-center experience providing palliative care to pediatric patients with end-stage renal disease. J Palliat Med 20:845–849

    Article  Google Scholar 

  37. Hancock HS, Pituch K, Uzark K, Bhat P et al (2018) A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease. Cardiol Young 28:561–570. https://doi.org/10.1017/S1047951117002761

    Article  PubMed  Google Scholar 

  38. Rosenberg AR, Wolfe J, Bradford MC, Shaffer ML et al (2014) Resilience and psychosocial outcomes in parents of children with cancer. Pediatr Blood Cancer 61:552–557. https://doi.org/10.1002/pbc.24854

    Article  PubMed  Google Scholar 

  39. Rosenberg AR, Yi-Frazier JP (2016) Commentary: resilience defined: an alternative perspective. J Pediatr Psychol 41:506–509. https://doi.org/10.1093/jpepsy/jsw018

    Article  PubMed  PubMed Central  Google Scholar 

  40. Svavarsdottir EK, McCubbin MA, Kane JH (2000) Well-being of parents of young children with asthma. Res Nurs Health 23:346–358. https://doi.org/10.1002/1098-240x(200010)23:5%3c346::aid-nur2%3e3.0.co;2-w

    Article  CAS  PubMed  Google Scholar 

  41. Hilliard ME, Harris MA, Weissberg-Benchell J (2012) Diabetes resilience: a model of risk and protection in type 1 diabetes. Curr Diab Rep 12:739–748. https://doi.org/10.1007/s11892-012-0314-3

    Article  PubMed  Google Scholar 

  42. Li X, Chi P, Sherr L, Cluver L, Stanton B (2015) Psychological resilience among children affected by parental HIV/AIDS: a conceptual framework. Health Psychol Behav Med 3:217–235. https://doi.org/10.1080/21642850.2015.1068698

    Article  PubMed  Google Scholar 

  43. Cousineau TM, Hobbs LM, Arthur KC (2019) The role of compassion and mindfulness in building parental resilience when caring for children with chronic conditions: a conceptual model. Front Psychol 10:1602. https://doi.org/10.3389/fpsyg.2019.01602

    Article  PubMed  PubMed Central  Google Scholar 

  44. Goldstein SL, Gerson AC, Goldman CW, Furth S (2006) Quality of life for children with chronic kidney disease. Semin Nephrol 26:114–117. https://doi.org/10.1016/j.semnephrol.2005.09.004

    Article  PubMed  Google Scholar 

  45. Buyan N, Türkmen MA, Bilge I, Baskin E et al (2010) Quality of life in children with chronic kidney disease (with child and parent assessments). Pediatr Nephrol 25:1487–1496. https://doi.org/10.1007/s00467-010-1486-1

    Article  PubMed  Google Scholar 

  46. El-Abbassy AA, Atia MM, Alam FH (2015) The effectiveness of practical guides on burden’s coping strategies among caregiver of children undergoing hemodialysis. Int J Nurs 2(2). https://doi.org/10.15640/ijn.v2n2a13

  47. Rosenberg AR, Bradford MC, Junkins CC, Taylor M et al (2019) Effect of the Promoting Resilience in Stress Management Intervention for Parents of Children With Cancer (PRISM-P): a randomized clinical trial. JAMA Netw Open 2:e1911578. https://doi.org/10.1001/jamanetworkopen.2019.11578

    Article  PubMed  PubMed Central  Google Scholar 

  48. Kukihara H, Yamawaki N, Ando M, Nishio M et al (2020) The mediating effect of resilience between family functioning and mental well-being in hemodialysis patients in Japan: a cross-sectional design. Health Qual Life Outcomes 18:233. https://doi.org/10.1186/s12955-020-01486-x

    Article  PubMed  PubMed Central  Google Scholar 

  49. United States Renal Data System (2018) 2018 USRDS Annual Data Report: epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD

Download references

Acknowledgements

We acknowledge and thank the caregivers who participated in this study. We also thank Raymond Ruiz, MA, for his assistance in data analysis, as well as Shari Neul, PhD; KristiLynn Cedars, PhD; and Katherine Lepere, BA, for their contributions to the original study.

Funding

Dr. House is supported by a National Institutes of Health training grant (5T32DK007662-30, PI Hingorani). The funding organizations had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript.

Author information

Authors and Affiliations

  1. Department of Pediatrics, Seattle Children’s Hospital, University of Washington, 4800 Sandpoint Way NE, Seattle, WA, 98105, USA

    Taylor R. House, Abby R. Rosenberg & Aaron Wightman

  2. Department of Pediatric Psychology, Texas Children’s Hospital, 6701 Fannin Street 16th Floor, Houston, TX, 77030, USA

    Cortney T. Zimmerman

  3. Seattle Children’s Research Institute, 1920 Terry Ave, M/S CURE-4, PO Box 5371, Seattle, WA, 98145, USA

    Krysta S. Barton

Authors
  1. Taylor R. House
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Abby R. Rosenberg
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Cortney T. Zimmerman
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Krysta S. Barton
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Aaron Wightman
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Taylor R. House.

Ethics declarations

Ethics approval

The original study was approved by the institutional review boards at SCH, TCH, and CHW; secondary analysis was exempted by the SCH institutional review board.

Conflict of interest

The authors declare no competing interests.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Graphical Abstract 5472 (PPTX 97.4 KB)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

House, T.R., Rosenberg, A.R., Zimmerman, C.T. et al. Caregiver perspectives of dialysis initiation for children with kidney disease: a qualitative study. Pediatr Nephrol 37, 2457–2469 (2022). https://doi.org/10.1007/s00467-022-05472-x

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00467-022-05472-x

Keywords

Search

Navigation