A investigation into hope, self-efficacy, distress and uncertainty in parents who have a child with a life-threatening or life-limiting illness


      • Parents of children with a LLI/LTI had high levels of hope and self-efficacy.
      • The highest prevalence of hope was amongst parents who could stay at home with their children.
      • Higher self-efficacy was associated with parents who did not have financial concerns.
      • Increased uncertainty was found amongst the parents who did not have other children living in the home.
      • Increased distress was associated with financial concerns.



      To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations with respect to demographic characteristics.

      Design and methods

      Data for this analysis are derived from a quasi-experimental evaluation of a support intervention with a purposeful sample of parental caregivers from a western Canadian province. Participants completed a demographic survey and four quantitative measures at baseline and following use of the support intervention.


      Many parents had high scores of hope and self-efficacy, with highest levels of hope amongst parents who could stay at home with their children, and higher self-efficacy expressed by parents without financial concerns. Increased levels of uncertainty and distress were found amongst parents without other children living in the home, and those with financial concerns, respectively.


      This exploratory analysis found that many parents experienced clinically significant distress along with uncertainty. The results determined that caring for children in the home other than the ill child significantly decreased uncertainty. High levels of parental hope and self-efficacy were frequently identified, with variations reflecting differences in social roles and stressors. The results contribute to an increased understanding of the value of support resources including parental leave and financial support.

      Practice implications

      Pediatric nurses may consider adopting an approach to caring for families with children in treatment for LLIs/LTIs that gives high priority to promoting hope and self-efficacy while ensuring access to support resources.


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        • Bally J.M.
        • Duggleby W.
        • Holtslander L.
        • Mpofu C.
        • Spurr S.
        • Thomas R.
        • Wright K.
        Keeping hope possible: a grounded theory study of the hope experience of parental caregivers who have children in treatment for cancer.
        Cancer Nursing. 2014; 37: 363-372
        • Bally J.M.G.
        • Burles M.
        • Spurr S.
        • Holtslander L.
        • Hodgson-Viden H.
        • Sinha R.
        • Zimmer M.
        Keeping Hope Possible Toolkit: The Development and Evaluation of a Psychosocial Intervention for Parents of Infants, Children and Adolescents with Life Limiting and Life Threatening Illnesses.
        Children (Basel). 2021; 8
        • Bally J.M.G.
        • Smith N.R.
        • Holtslander L.
        • Duncan V.
        • Hodgson-Viden H.
        • Mpofu C.
        • Zimmer M.
        A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses.
        Journal of Pediatric Nursing. 2018; 38: 88-98
        • Barrera M.
        • Granek L.
        • Shaheed J.
        • Nicholas D.
        • Beaune L.
        • D’Agostino N.M.
        • Antle B.
        The tenacity and tenuousness of hope: Parental experiences of hope when their child has a poor cancer prognosis.
        Cancer Nursing. 2013; 36: 408-416
        • Bozkurt G.
        • Uysal G.
        • Düzkaya D.S.
        Examination of care burden and stress coping styles of parents of children with Autism Spectrum Disorder.
        Journal of Pediatric Nursing. 2019; 47: 142-147
        • Boztepe H.
        • Çınar S.
        • Ay A.
        • Kerimoğlu Yıldız G.
        • Kılıç C.
        Predictors of caregiver burden in mothers of children with leukemia and cerebral palsy.
        Journal of Psychosocial Oncology. 2019; 37: 69-78
        • Brehaut J.C.
        • Garner R.E.
        • Miller A.R.
        • Lach L.M.
        • Klassen A.F.
        • Rosenbaum P.L.
        • Kohen D.E.
        Changes over time in the health of caregivers of children with health problems: Growth-curve findings from a 10-year Canadian population-based study.
        American Journal of Public Health. 2011; 101: 2308-2316
        • Cadell S.
        • Kennedy K.
        • Hemsworth D.
        Informing social work practice through research with parent caregivers of a child with a life-limiting illness.
        Journal of Social Work in End-of-Life & Palliative Care. 2012; 8: 356-381
        • Caicedo C.
        Families with special needs children: Family health, functioning, and care burden.
        Journal of the American Psychiatric Nurses Association. 2014; 20: 398-407
        • Collins A.
        • Hennessy-Anderson N.
        • Hosking S.
        • Hynson J.
        • Remedios C.
        • Thomas K.
        Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study.
        Palliative Medicine. 2016; 30: 950-959
        • Edmond S.N.
        • Graves P.E.
        • Whiting S.E.
        • Karlson C.W.
        Emotional distress and burden among caregivers of children with oncological/hematological disorders.
        Families, Systems & Health. 2016; 34: 166-171
        • Enskär K.
        • Darcy L.
        • Björk M.
        • Knutsson S.
        • Huus K.
        Experiences of young children with cancer and their parents with nurses’ caring practices during the cancer trajectory.
        Journal of Pediatric Oncology Nursing. 2020; 37: 21-34
        • Fitzgerald C.
        • George S.
        • Somerville R.
        • Linnane B.
        • Fitzpatrick P.
        Caregiver burden of parents of young children with cystic fibrosis.
        Journal of Cystic Fibrosis. 2018; 17: 125-131
        • van der Geest I.M.
        • van den Heuvel-Eibrink M.M.
        • Falkenburg N.
        • Michiels E.M.
        • van Vliet L.
        • Pieters R.
        • Darlington A.S.
        Parents’ faith and hope during the pediatric palliative phase and the association with long-term parental adjustment.
        Journal of Palliative Medicine. 2015; 18: 402-407
        • Herth K.
        Abbreviated instrument to measure hope: Development and psychometric evaluation.
        Journal of Advanced Nursing. 1992; 17: 1251-1259
        • Incledon E.
        • Williams L.
        • Hazell T.
        • Heard T.R.
        • Flowers A.
        • Hiscock H.
        A review of factors associated with mental health in siblings of children with chronic illness.
        Journal of Child Health Care. 2015; 19: 182-194
        • Jones V.
        • Whitehead L.
        • Crowe M.T.
        Self-efficacy in managing chronic respiratory disease: parents’ experiences.
        Contemporary Nurse. 2016; 52: 341-351
        • Kerr L.M.
        • Harrison M.B.
        • Medves J.
        • Tranmer J.
        Supportive care needs of parents of children with cancer: Transition from diagnosis to treatment.
        Oncology Nursing Forum. 2004; 31: E116-E126
        • Kessler R.C.
        • Andrews G.
        • Colpe L.J.
        • Hiripi E.
        • Mroczek D.K.
        • Normand S.L.
        • Zaslavsky A.M.
        Short screening scales to monitor population prevalences and trends in non-specific psychological distress.
        Psychological Medicine. 2002; 32: 959-976
        • Klymä J.
        • Juvakka T.
        Hope in parents of adolescents with cancer: Factors endangering and engendering parental hope.
        European Journal of Oncology Nursing. 2007; 11: 262-271
        • Kobos E.
        • Imiela J.
        Factors affecting the level of burden of caregivers of children with type 1 diabetes.
        Applied Nursing Research. 2015; 28: 142-149
        • Koch A.
        • Kozhumam A.S.
        • Seeler E.
        • Docherty S.L.
        • Brandon D.
        Multiple roles of parental caregivers of children with complex life-threatening conditions: A qualitative descriptive analysis.
        Journal of Pediatric Nursing. 2021; 61: 67-74
        • Koch K.D.
        • Jones B.L.
        Supporting parent caregivers of children with life-limiting illness.
        Children (Basel). 2018; 5
        • Mishel M.H.
        Parents’ perception of uncertainty concerning their hospitalized child.
        Nursing Research. 1983; 32: 324-330
        • Park M.
        • Suh E.E.
        • Yu S.Y.
        Uncertainty and nursing needs of parents with pediatric cancer patients in different treatment phases: A cross-sectional study.
        International Journal of Environmental Research and Public Health. 2021; 18
        • Pearce C.
        • Newman S.
        • Mulligan K.
        Illness uncertainty in parents of children with juvenile idiopathic arthritis.
        ACR Open Rheumatol. 2021; 3: 250-259
        • Pelentsov L.J.
        • Fielder A.L.
        • Laws T.A.
        • Esterman A.J.
        The supportive care needs of parents with a child with a rare disease: Results of an online survey.
        BMC Family Practice. 2016; 17: 88
        • Reder E.A.
        • Serwint J.R.
        Until the last breath: Exploring the concept of hope for parents and health care professionals during a child’s serious illness.
        Archives of Pediatrics & Adolescent Medicine. 2009; 163: 653-657
        • Santacroce S.J.
        • Kneipp S.M.
        A conceptual model of financial toxicity in pediatric oncology.
        Journal of Pediatric Oncology Nursing. 2019; 36: 6-16
      1. Schwarzer R. Jerusalem M. Generalized self-efficacy scale. NFER – NELSON, 1995
        • Smith J.
        • Cheater F.
        • Bekker H.
        Parents’ experiences of living with a child with hydrocephalus: A cross-sectional interview-based study.
        Health Expectations. 2015; 18: 1709-1720
        • Sultan S.
        • Leclair T.
        • Rondeau E.
        • Burns W.
        • Abate C.
        A systematic review on factors and consequences of parental distress as related to childhood cancer.
        The European Journal of Cancer Care (Engl). 2016; 25: 616-637
        • Tan R.
        • Koh S.
        • Wong M.E.
        • Rui M.
        • Shorey S.
        Caregiver stress, coping strategies, and support needs of mothers caring for their children who are undergoing active cancer treatments.
        Clinical Nursing Research. 2020; 29: 460-468
        • Williams P.D.
        • Williams K.A.
        • Williams A.R.
        Parental caregiving of children with cancer and family impact, economic burden: Nursing perspectives.
        Issues in Comprehensive Pediatric Nursing. 2014; 37: 39-60