Parents’ Roles and Strategies for Caring for a Child With Cancer During Hospitalisation at Home: A Qualitative Study of Parenting Experiences

Abstract

Objective:

Paediatric cancer impacts both children and their families, transforming relationships and parenting styles. Within this context, hospitalisation at home (HaH) is increasingly offered in paediatric oncology, transferring care to the home setting and reconfiguring parenting styles. However, the literature on how parents redefine their roles and strategies at home remains limited. The aim of this study is to describe how parents of children with cancer redefine parenting in HaH by identifying the roles and strategies they use.

Methods:

A qualitative study using semi-structured individual interviews was conducted. The interviews were recorded, transcribed and analysed using Reflexive Thematic Analysis.

Results:

Twenty-seven parents were interviewed (18 mothers and 9 fathers). Analysis highlighted four themes: (a) adapting to a new care dynamic; (b) sharing parenting with health care teams; (c) taking on multiple parental roles (emotional parent, caregiver, mediator, child’s guide, parent for siblings and leader/coordinator); and (d) developing parenting strategies (mutual support between spouses, anticipation and control strategies, selective distancing and negotiating personal distress).

Conclusion:

HaH transforms parenting into a demanding experience that requires constant adjustments. Parenting manifests itself as an ongoing process, not just based on creativity and adaptability, but also marked by a silent vulnerability that highlights the need to fully recognise and support parents.

Keywords

child with cancer hospitalisation at home parenting parental roles parenting strategies

Get full access to this article

View all access options for this article.

References

Aasen

Ponton

I. G.

Johannessen

A.-K. M.

(2019). Being in control and striving for normalisation: A Norwegian pilot study on parents’ perceptions of hospital-at-home. Scandinavian Journal of Caring Sciences, 33(1), 102–110. https://doi.org/10.1111/scs.12606

Alsem

M. W.

Siebes

R. C.

Gorter

J. W.

Jongmans

M. J.

Nijhuis

B. G. J.

Ketelaar

(2014). Assessment of family needs in children with physical disabilities: Development of a family needs inventory. Child: Care, Health and Development, 40(4), 498–506. https://doi.org/10.1111/cch.12093

Angelhoff

Edéll-Gustafsson

Mörelius

(2015). Sleep of parents living with a child receiving hospital-based home care: A phenomenographical study. Nursing Research, 64(5), 372–380. https://doi.org/10.1097/NNR.0000000000000108

Arendell

(Ed.). (1997). Contemporary parenting: Challenges and issues (p. viii, 352). Sage.

Auret

Sinclair

Averill

Evans

(2015). Advance care planning and end-of-life care in a network of rural Western Australian hospitals. The Australian Journal of Rural Health, 23(4), 195–200. https://doi.org/10.1111/ajr.12167

Baussant-Crenn

Lebeault

Maubon-ØEuillet

(2023). Chapitre 15. Hospitalisation à domicile en oncopédiatrie: Entre ordinaire et extra-ordinaire [Chapter 15. Home hospitalization in pediatric oncology: Between ordinary and extraordinary]. In Haegen

Flahault

Marioni

(Eds.), Grand manuel de psycho-oncologie (pp. 347–364). Dunod. https://shs.cairn.info/article/DUNOD_VANDE_2023_01_0347

Braun

Clarke

(2013). Successful qualitative research: A practical guide for beginners (pp. 1–400). Sage.

Braun

Clarke

(2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806

Braun

Clarke

(2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328–352. https://doi.org/10.1080/14780887.2020.1769238

10.

Braun

Clarke

(2024). Supporting best practice in reflexive thematic analysis reporting in Palliative Medicine: A review of published research and introduction to the Reflexive Thematic Analysis Reporting Guidelines (RTARG). Palliative Medicine, 38(6), 608–616. https://doi.org/10.1177/02692163241234800

11.

Braun

Clarke

Hayfield

Terry

(2019). Thematic analysis. In Liamputtong

(Ed.), Handbook of research methods in health social sciences (pp. 843–860). Springer.

12.

Carter

Bray

Ford

Edwards

Dickinson

(2014). Child-centred nursing: Promoting critical thinking. https://www.torrossa.com/gs/resourceProxy?an=5019295&publisher=FZ7200

13.

Coad

Kaur

Ashley

Owens

Hunt

Chambers

Brown

(2015). Exploring the perceived met and unmet need of life-limited children, young people and families. Journal of Pediatric Nursing, 30(1), 45–53. https://doi.org/10.1016/j.pedn.2014.09.007

14.

de Flon

Glaffey

Jarl

Sellbrant

Nilsson

. (2021). The childhood cancer centre is coming home: Experiences of hospital-based home care. International Journal of Environmental Research and Public Health, 18(12), 6241. https://doi.org/10.3390/ijerph18126241

15.

Fraser

L. K.

Bluebond-Langner

Ling

(2020). Advances and challenges in European paediatric palliative care. Medical Sciences, 8(2), 20. https://doi.org/10.3390/medsci8020020

16.

Geuze

Goossensen

Schrevel

(2023). “Continuously struggling for balance”: The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities. Journal of Intellectual and Developmental Disability, 48(2), 161–171. https://doi.org/10.3109/13668250.2022.2073707

17.

Guba

E. G.

Lincoln

Y. S.

(1994). Competing paradigms in qualitative research. In Denzin

N. K.

Lincoln

Y. S.

(Eds.), Handbook of qualitative research (pp. 105–117). Sage.

18.

Hansson

Kjaergaard

Schmiegelow

Hallström

(2012). Hospital-based home care for children with cancer: A qualitative exploration of family members’ experiences in Denmark. European Journal of Cancer Care, 21(1), 59–66. https://doi.org/10.1111/j.1365-2354.2011.01280.x

19.

Hobson

Noyes

(2011). Fatherhood and children with complex healthcare needs: Qualitative study of fathering, caring and parenting. BMC Nursing, 10, 5. https://doi.org/10.1186/1472-6955-10-5

20.

Hunt

M. R.

(2009). Strengths and challenges in the use of interpretive description: Reflections arising from a study of the moral experience of health professionals in humanitarian work. Qualitative Health Research, 19(9), 1284–1292. https://doi.org/10.1177/1049732309344612

21.

Institut National du Cancer. (2024). https://www.cancer.fr/professionnels-de-sante/statistiques-et-chiffres-sur-les-cancers/epidemiologie-des-cancers/donnees-globales

22.

Kars

M. C.

Grypdonck

M. H. F.

de Bock

L. C.

van Delden

J. J. M.

(2015). The parents’ ability to attend to the “voice of their child” with incurable cancer during the palliative phase. Health Psychology, 34(4), 446–452. https://doi.org/10.1037/hea0000166

23.

Kassam

Skiadaresis

Alexander

Wolfe

(2014). Parent and clinician preferences for location of end-of-life care: Home, hospital or freestanding hospice? Pediatric Blood & Cancer, 61(5), 859–864. https://doi.org/10.1002/pbc.24872

24.

Kirakosyan

Bacqué

M.-F.

(2025). Interpretative phenomenological analysis of mothers’ experience of caring for their child dying of cancer at home. Comprehensive Child and Adolescent Nursing, 48(4), 259–277. https://doi.org/10.1080/24694193.2025.2544992

25.

Kirakosyan

Plichart

Laradji

Bacqué

M.-F.

(2025). Parenting process in paediatric palliative care for children with cancer during hospitalisation at home: A qualitative study of the maternal experience. Scandinavian Journal of Caring Sciences, 39(4), e70107. https://doi.org/10.1111/scs.70107

26.

Knapp

C. A.

Madden

V. L.

Curtis

C. M.

Sloyer

Shenkman

E. A.

(2010). Family support in pediatric palliative care: How are families impacted by their children’s illnesses? Journal of Palliative Medicine, 13(4), 421–426. https://doi.org/10.1089/jpm.2009.0295

27.

Levine

D. M.

Desai

M. P.

Ross

Como

Anne Gill

(2021). Rural perceptions of acute care at home: A qualitative analysis. The Journal of Rural Health, 37(2), 353–361. https://doi.org/10.1111/jrh.12551

28.

Lewandowska

Zych

Papp

Zrubcová

Kadučáková

Šupínová

Apay

S. E.

Nagórska

(2021). Problems, stressors and needs of children and adolescents with cancer. Children, 8(12), 1173. https://doi.org/10.3390/children8121173

29.

Lin

Chen

Loke

A. Y.

(2018). Mutual support and challenges among Chinese couples living with colorectal cancer: A qualitative study. Cancer Nursing, 41(5), E50–E60. https://doi.org/10.1097/NCC.0000000000000553

30.

Loi Informatique et Liberté, CNIL. (1978). https://www.legifrance.gouv.fr/loda/id/JORFTEXT000000886460/

31.

Lowes

Gregory

J. W.

Lyne

(2005). Newly diagnosed childhood diabetes: A psychosocial transition for parents? Journal of Advanced Nursing, 50(3), 253–261. https://doi.org/10.1111/j.1365-2648.2005.03388.x

32.

Malterud

Siersma

V. D.

Guassora

A. D.

(2016). Sample size in qualitative interview studies: Guided by information power. Qualitative Health Research, 26(13), 1753–1760. https://doi.org/10.1177/1049732315617444

33.

McCaffrey

C. N.

(2006). Major stressors and their effects on the well-being of children with cancer. Journal of Pediatric Nursing, 21(1), 59–66. https://doi.org/10.1016/j.pedn.2005.07.003

34.

McCann

Bull

Winzenberg

(2012). The daily patterns of time use for parents of children with complex needs: A systematic review. Journal of Child Health Care, 16(1), 26–52. https://doi.org/10.1177/1367493511420186

35.

Nieuwesteeg

Hartman

Emons

van Bakel

Aanstoot

H.-J.

van Mil

Pouwer

(2017). Paediatric parenting stress in fathers and mothers of young children with Type 1 diabetes: A longitudinal study. Diabetic Medicine, 34(6), 821–827. https://doi.org/10.1111/dme.13300

36.

Nowell

L. S.

Norris

J. M.

White

D. E.

Moules

N. J.

(2017). Thematic analysis: Striving to meet the trustworthiness criteria. International Journal of Qualitative Methods, 16(1), 1609406917733847. https://doi.org/10.1177/1609406917733847

37.

Noyes

Herbert

Moloney

Irving

Bradford

(2022). Location of end-of-life care of children with cancer: A systematic review of parent experiences. Pediatric Blood & Cancer, 69(6), e29621. https://doi.org/10.1002/pbc.29621

38.

Page

B. F.

Hinton

Harrop

Vincent

(2020). The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 23(5), 1144–1154. https://doi.org/10.1111/hex.13092

39.

Patterson

J. M.

Holm

K. E.

Gurney

J. G.

(2004). The impact of childhood cancer on the family: A qualitative analysis of strains, resources, and coping behaviors. Psycho-Oncology, 13(6), 390–407. https://doi.org/10.1002/pon.761

40.

Rolland

J. S.

(2005). Cancer and the family: An integrative model. Cancer, 104(11 Suppl), 2584–2595. https://doi.org/10.1002/cncr.21489

41.

Salomé

Martin

Baussant-Crenn

Flahault

(2024). Parents’ experience of pediatric home care: A qualitative exploratory study. Psycho-Oncologie, 18(2), 137–146. https://doi.org/10.32604/po.2024.046820

42.

Smith

Swallow

Coyne

(2015). Involving parents in managing their child’s long-term condition-a concept synthesis of family-centered care and partnership-in-care. Journal of Pediatric Nursing, 30(1), 143159. https://doi.org/10.1016/j.pedn.2014.10.014

43.

Tao

Gao

Cole

Baker

J. S.

Supriya

Tong

T. K.

Awan-Scully

(2022). The physiological and psychological benefits of dance and its effects on children and adolescents: A systematic review. Frontiers in Physiology, 13, 925958. https://doi.org/10.3389/fphys.2022.925958

44.

Tong

Sainsbury

Craig

(2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042

45.

Verberne

L. M.

Kars

M. C.

Schouten-van Meeteren

A. Y. N.

van den Bergh

E. M. M.

Bosman

D. K.

Colenbrander

D. A.

Grootenhuis

M. A.

van Delden

J. J. M.

(2019). Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: A qualitative study. European Journal of Pediatrics, 178(7), 1075–1085. https://doi.org/10.1007/s00431-019-03393-w

46.

Woodgate

R. L.

Edwards

Ripat

J. D.

Borton

Rempel

(2015). Intense parenting: A qualitative study detailing the experiences of parenting children with complex care needs. BMC Pediatrics, 15, 197. https://doi.org/10.1186/s12887-015-0514-5