The resilient process of the family after diagnosis of childhood chronic illness: a qualitative meta-synthesis


      • Childhood chronic illness as a family stress has a serious effect on the family function.
      • The experience of the family resilient process presents complex, multifaceted, and dynamic process.
      • Specific intervention targeted at different period of family adjustment process is warranted to help families to recover from crises.



      Childhood chronic illness has a serious effect on the whole family. As there is yet little known about how the families adjust to the diagnosis of childhood chronic illness, this qualitative meta-synthesis aims to further our knowledge regarding the resilient process.

      Eligibility criteria

      A meta-synthesis review was conducted to explore the resilient process of the family after diagnosis of childhood chronic illness using nine electronic databases PubMed (MEDLINE), Web of Science, the Cochrane Library, SCOPUS, PsycINFO, CINAHL, Wan Fang, CBM, and CNKI from each database's inception to December 31,2020. Snowball sampling and manual search were performed to identify other relevant studies.


      Seventeen qualitative studies met the inclusion criteria and were analyzed into meta-synthesis.


      Three key meta-themes were identified across the studies: (a) disintegration and vulnerability: emotional fluctuation and household chaos; (b) adjustment and adaptation: struggle with family needs; (c) recovery and reconstruction: growth and expectation.


      Family adjustment to childhood chronic illness presents a complex, multifaceted and dynamic process. Identifying characteristics of family processes provides some practical interventions for families with a chronically ill child.


      There is a need for all health professionals and social care services to be aware of the experience of family adjustment of children diagnosed with chronic illness. The specific intervention targeted at different periods of the family adjustment process is warranted to help families to recover from crises and deal better with challenges.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


        • Aromataris E.
        • Munn Z.
        JBI manual for evidence synthesis.
        • Batte S.
        • Watson A.R.
        • Amess K.
        The effects of chronic renal failure on siblings.
        Pediatric Nephrology. 2006; 21: 246-250
        • Brody A.C.
        • Simmons L.A.
        Family resiliency during childhood cancer: The father’s perspective.
        Journal of Pediatric Oncology Nursing. 2007; 24: 152-165
        • Brown O.
        • Fouché P.
        • Coetzee M.
        Bouncing forward: Families living with a type I diabetic child.
        South African Family Practice. 2014; 52: 536-541
        • Chew J.
        • Carpenter J.
        • Haase A.M.
        Young people’s experiences of living with epilepsy: The significance of family resilience.
        Social Work in Health Care. 2018; 57: 332-354
        • Cotton S.
        • Grossoehme D.
        • Rosenthal S.L.
        • McGrady M.E.
        • Roberts Y.H.
        • Hines J.
        • Tsevat J.
        Religious/Spiritual coping in adolescents with sickle cell disease: A pilot study.
        Journal of Pediatric Hematology/Oncology. 2009; 31: 313-318
        • Dong C.
        • Wu Q.
        • Pan Y.
        • Yan Q.
        • Xu R.
        • Zhang R.
        Family resilience and its association with psychosocial adjustment of children with chronic illness: A latent profile analysis.
        Journal of Pediatric Nursing. 2021; 60: e6-e12
        • Durr E.
        • Greeff A.P.
        Resilience characteristics of families with children with severe or profound intellectual disability.
        Social Work-Maatskaplike Werk. 2020; 56: 221-234
        • Faccio F.
        • Renzi C.
        • Giudice A.V.
        • Pravettoni G.
        Family resilience in the oncology setting: Development of an integrative framework.
        Frontiers in Psychology. 2018; 9: 666
        • Gance-Cleveland B.
        Adaptation to Addison's disease in a child: A case study.
        Journal of Pediatric Health Care. 2003; 17: 301-310
        • van der Geest I.M.
        • van den Heuvel-Eibrink M.M.
        • Passchier J.
        • van den Hoed-Heerschop C.
        • Pieters R.
        • Darlington A.S.
        Parenting stress as a mediator of parents’ negative mood state and behavior problems in children with newly diagnosed cancer.
        Psychooncology. 2014; 23: 758-765
        • Georgiopoulos A.M.
        • Christon L.M.
        • Filigno S.S.
        • Mueller A.
        • Prieur M.G.
        • Boat T.F.
        • Smith B.A.
        Promoting emotional wellness in children with CF, part II: Mental health assessment and intervention.
        Pediatric Pulmonology. 2021; 56: S107-S122
        • Goldin-Meadow S.
        • Mylander C.
        The role of parental input in the development of a morphological system.
        Journal of Child Language. 1990; 17: 527-563
        • Goldman T.R.
        Working With A Chronic Disease.
        Health Aff (Millwood). 2017; 36: 202-205
        • Grandjean C.
        • Ullmann P.
        • Marston M.
        • Maitre M.C.
        • Perez M.H.
        • Ramelet A.S.
        Sources of stress, family functioning, and needs of families with a chronic critically Ill child: A qualitative study.
        Frontiers in Pediatrics. 2021; 9740598
        • Hadfield K.
        • Ungar M.
        Family resilience: Emerging trends in theory and practice.
        Journal of Family Social Work. 2018; 21: 81-84
        • Hall H.R.
        • Fruh S.
        • Zlomke K.
        • Swingle H.
        A qualitative analysis of the experiences of minority parents of children with autism spectrum disorder.
        Advances in Neurodevelopmental Disorders. 2017; 1: 79-88
        • Hall H.R.
        • Neely-Barnes S.L.
        • Graff J.C.
        • Krcek T.E.
        • Roberts R.J.
        • Hankins J.S.
        Parental stress in families of children with a genetic disorder/disability and the resiliency model of family stress, adjustment, and adaptation.
        Issues in Comprehensive Pediatric Nursing. 2012; 35: 24-44
        • Harrist A.W.
        • Henry C.S.
        • Liu C.
        • Morris A.S.
        Family resilience: The power of rituals and routines in family adaptive systems.
        in: APA handbook of contemporary family psychology: Foundations, methods, and contemporary issues across the lifespan. Vol. 1. American Psychological Association, 2019: 223-239
        • Hesamzadeh A.
        • Dalvandi A.
        • Bagher Maddah S.
        • Fallahi Khoshknab M.
        • Ahmadi F.
        Family adaptation to stroke: A metasynthesis of qualitative research based on double ABCX model.
        Asian Nurs Res (Korean Soc Nurs Sci). 2015; 9: 177-184
        • Hovén E.
        • Anclair M.
        • Samuelsson U.
        • Kogner P.
        • Boman K.K.
        The influence of pediatric cancer diagnosis and illness complication factors on parental distress.
        Journal of Pediatric Hematology/Oncology. 2008; 30: 807-814
        • Irie W.
        • Shiwaku H.
        • Taku K.
        • Suzuki Y.
        • Inoue Y.
        Roles of reexamination of core beliefs and rumination in posttraumatic growth among parents of children with cancer: Comparisons with parents of children with chronic disease.
        Cancer Nursing. 2021; 44: 20-28
        • John A.
        • Zapata Roblyer M.
        Mothers Parenting a Child With Intellectual Disability in Urban India: An Application of the Stress and Resilience Framework.
        Intellectual and Developmental Disabilities. 2017; 55: 325-337
        • Kaugars A.S.
        • Kichler J.C.
        • Alemzadeh R.
        Assessing readiness to change the balance of responsibility for managing type 1 diabetes mellitus: Adolescent, mother, and father perspectives.
        Pediatric Diabetes. 2011; 12: 547-555
        • Kish A.M.
        • Newcombe P.A.
        • Haslam D.M.
        Working and caring for a child with chronic illness: A review of current literature.
        Child: Care, Health and Development. 2018; 44: 343-354
        • Knafl K.
        • Zoeller L.
        Childhood chronic illness: A comparison of mothers' and fathers' experiences.
        Journal of Family Nursing - J FAM NURS. 2000; 6: 287-302
        • Kuerten B.G.
        • Brotkin S.
        • Bonner M.J.
        • Ayuku D.O.
        • Njuguna F.
        • Taylor S.M.
        • Puffer E.S.
        Psychosocial burden of childhood sickle cell disease on caregivers in Kenya.
        Journal of Pediatric Psychology. 2020; 45: 561-572
        • van der Lee J.H.
        • Mokkink L.B.
        • Grootenhuis M.A.
        • Heymans H.S.
        • Offringa M.
        Definitions and measurement of chronic health conditions in childhood: A systematic review.
        Jama. 2007; 297: 2741-2751
        • Li D.
        • Tian G.
        Growing in adversity: A case study on the family resilience of a family with an autistic child.
        Journal of East China University of Science and Technology(Social Science Edition). 2018; 33: 42-50
        • Lian X.
        • Jia Y.
        • Wang L.
        • Wang Y.
        • Li X.
        • Jia H.
        Mothers caring experiences of children with congenital hand or foot abnormalities: A phenomenological study.
        Journal of Pediatric Nursing. 2022; 62: e164-e169
        • Liu Q.
        • Petrini M.A.
        • Luo D.
        • Yang B.X.
        • Yang J.
        • Haase J.E.
        Parents’ experiences of having a young child with acute lymphoblastic leukemia in China.
        Journal of Pediatric Oncology Nursing. 2021; 38: 94-104
        • Liu Y.
        • Xiao F.
        A case study of the formation of the family resilience in a family with a hearing- impaired child.
        Chinese Journal of Special Education. 2018; 2018: 26-31
        • Lummer-Aikey S.
        • Goldstein S.
        Sibling adjustment to childhood chronic illness: An integrative review.
        Journal of Family Nursing. 2020; 27: 136-153
        • Luthar S.S.
        • Cicchetti D.
        • Becker B.
        The construct of resilience: A critical evaluation and guidelines for future work.
        Child Development. 2000; 71: 543-562
        • Lyu Q.Y.
        • Zhang M.F.
        • Bu X.Q.
        • Zhou X.Z.
        • Zhao X.
        A qualitative study exploring coping strategies in Chinese families during children’s hospitalization for cancer treatment.
        Journal of Pediatric Nursing. 2019; 48: e27-e34
        • MacPhee D.
        • Lunkenheimer E.
        • Riggs N.
        Resilience as regulation of developmental and family processes.
        Family Relations. 2015; 64: 153-175
        • McGrath P.
        • Paton M.A.
        • Huff N.
        Beginning treatment for paediatric acute myeloid leukaemia: Diagnosis and the early hospital experience.
        Scandinavian Journal of Caring Sciences. 2004; 18: 358-367
        • Miedema B.
        • Hamilton R.
        • Fortin P.
        • Easley J.
        • Matthews M.
        "You can only take so much, and it took everything out of me": Coping strategies used by parents of children with cancer.
        Palliative & Supportive Care. 2010; 8: 197-206
        • Mu P.F.
        Transition experience of parents caring of children with epilepsy: A phenomenological study.
        International Journal of Nursing Studies. 2008; 45: 543-551
        • Nabors L.
        • Cunningham J.F.
        • Lang M.
        • Wood K.
        • Southwick S.
        • Stough C.O.
        Family coping during hospitalization of children with chronic illnesses.
        Journal of Child and Family Studies. 2017; 27: 1482-1491
        • Page M.J.
        • McKenzie J.E.
        • Bossuyt P.M.
        • Boutron I.
        • Hoffmann T.C.
        • Mulrow C.D.
        • Moher D.
        The PRISMA 2020 statement: An updated guideline for reporting systematic reviews.
        BMJ. 2021; 372n71
        • Patterson J.M.
        Integrating family resilience and family stress theory.
        Journal of Marriage and the Family. 2010; 64: 349-360
        • Petrongolo J.L.
        • Zelikovsky N.
        • Keegan R.M.
        • Furth S.L.
        • Knight A.
        Examining uncertainty in illness in parents and children with chronic kidney disease and systemic lupus erythematosus: A mediational model of internalizing symptoms and health-related quality of life.
        Journal of Clinical Psychology in Medical Settings. 2020; 27: 31-40
        • Piel M.H.
        • Geiger J.M.
        • Julien-Chinn F.J.
        • Lietz C.A.
        An ecological systems approach to understanding social support in foster family resilience.
        Child & Family Social Work. 2017; 22: 1034-1043
        • Qiu Y.
        • Xu L.
        • Pan Y.
        • He C.
        • Huang Y.
        • Xu H.
        • Lu Z.
        • Dong C.
        Family resilience, parenting styles and psychosocial adjustment of children with chronic illness: A cross-sectional study.
        Frontiers in Psychiatry. 2021; 12646421
        • Rajhans P.
        • Goin-Kochel R.P.
        • Strathearn L.
        • Kim S.
        It takes two! Exploring sex differences in parenting neurobiology and behaviour.
        Journal of Neuroendocrinology. 2019; 31e12721
        • Reader S.K.
        • Pantaleao A.
        • Keeler C.N.
        • Ruppe N.M.
        • Kazak A.E.
        • Rash-Ellis D.L.
        • Deatrick J.A.
        Family resilience from the perspective of caregivers of youth with sickle cell disease.
        Journal of Pediatric Hematology/Oncology. 2020; 42: 100-106
        • Stanton A.L.
        • Revenson T.A.
        • Tennen H.
        Health psychology: Psychological adjustment to chronic disease.
        Annual Review of Psychology. 2007; 58: 565-592
        • Suzuki K.
        • Hiratani M.
        • Mizukoshi N.
        • Hayashi T.
        • Inagaki M.
        Family resilience elements alleviate the relationship between maternal psychological distress and the severity of children's developmental disorders.
        Research in Developmental Disabilities. 2018; 83: 91-98
        • Thomas J.
        • Harden A.
        Methods for the thematic synthesis of qualitative research in systematic reviews.
        BMC Medical Research Methodology. 2008; 8: 45
        • Uddin J.
        • Alharbi N.
        • Uddin H.
        • Hossain M.B.
        • Hatipoğlu S.S.
        • Long D.L.
        • Carson A.P.
        Parenting stress and family resilience affect the association of adverse childhood experiences with children’s mental health and attention-deficit/hyperactivity disorder.
        Journal of Affective Disorders. 2020; 272: 104-109
        • Ungar M.
        Varied patterns of family resilience in challenging contexts.
        Journal of Marital and Family Therapy. 2016; 42: 19-31
        • Walsh F.
        The concept of family resilience: Crisis and challenge.
        Family Process. 1996; 35: 261-281
        • Walsh F.
        Family resilience: A framework for clinical practice.
        Family Process. 2003; 42: 1-18
        • Walsh F.
        Applying a family resilience framework in training, practice, and research: Mastering the art of the possible.
        Family Process. 2016; 55: 616-632
        • Weinstein S.M.
        • Pugach O.
        • Rosales G.
        • Mosnaim G.S.
        • Walton S.M.
        • Martin M.A.
        • Control A.
        Pediatrics. 2019; 144
        • Wong M.Y.
        • Chan S.W.
        The qualitative experience of Chinese parents with children diagnosed of cancer.
        Journal of Clinical Nursing. 2006; 15: 710-717
        • Yang J.
        A study on family resilience of haemophilia children.
        Lanzhou Academic Journal. 2019; 2019: 145-153
        • Zhang L.
        Family resilience of children with disabilities based on the theory of cultural ecology: Taking southwestern dong area as an example.
        Disability Research. 2020; 2020: 61-67