A Qualitative Study To Explore the Impact of Having Children with Cancer and Parental Adjustment
Abstract
Background: Cancer diagnosis in children impacts not only the children themselves but also their parents, and the role of providing support during the treatment process is crucial. The illness’s complexity, the diagnosis process, and the course of treatment can have various effects on parents and family life. To cope with the challenges of caring for their chronically ill children, families adopt a normalization process to restore their routines. Therefore, this study aims to investigate the implications of a childhood cancer diagnosis on families and how parents normalize their daily lives in the face of this difficult situation.
Methods: The study was a qualitative study conducted in a pediatric cancer shelter house in Bandung, Indonesia, from May to August 2018. Ten parents who had children with cancer were included in the study. Data were collected through interviews and thematically analyzed.
Results: This study yielded five themes: 1) parents’ negative feelings when children are first diagnosed with the illness, 2) various changes in the family’s life, 3) the impact on the family’s quality of life, 4) family’s extra effort to overcome the illness’s impact and 5) parents’ expectations for social support.
Conclusions: Cancer in children has a significant impact on the lives of the entire family, particularly parents. Normalizing the lives of parents who have children with cancer entails several adaptation or adjustment tasks. Nurses can assist families in adapting by guiding how to deal with the changes they are experiencing and accepting this as the new normal. Nurses can help families normalize their daily routines, provide social support, improve coping strategies, increase family closeness, and identify the source of support from other families or the community.
Keywords
DOI: 10.33371/ijoc.v18i1.1048
Article Metrics
Abstract View: 180, 
PDF Download: 54
References
Hockenberry M, Wilson D, Rodgers CC. Wong's essentials of pediatric nursing [Internet]. Tenth. Elsevier. St. Louis, Missouri: Elsevier; 2017. Available from: https://www.researchgate.net/publication/269107473_What_is_governance/link/548173090cf22525dcb61443/download%0Ahttp://www.econ.upf.edu/~reynal/Civil wars_12December2010.pdf%0Ahttps://think-asia.org/handle/11540/8282%0Ahttps://www.jstor.org/stable/41857625.
Mitchell AE, Morawska A, Mihelic M. A systematic review of parenting interventions for child chronic health conditions. J Child Heal Care. 2020;24(4):603–28.
World Health Organization. WHO Global Initiative for childhood cancer – India responds [Internet]. World Health Organization, editor. Vol. 5, Pediatric Hematology Oncology Journal. Bern; 2020. 145–150 p. Available from: https://www.who.int/docs/default-source/documents/health-topics/cancer/who-childhood-cancer-overview-booklet.pdf#:~:text=The World Health Organization %28WHO%29 Global Initiative for, lives and to live and die without suffering.
Union for International Cancer Control. Annual Report Leading the global fight against cancer. 2020;1–60.
Jibb LA, Chartrand J, Masama T, Johnston DL. Home-Based Pediatric Cancer Care: Perspectives and Improvement Suggestions From Children, Family Caregivers, and Clinicians. JCO Oncol Pract. 2021;17(6):e827–39.
Zouine M, Elbaz M, Elhoudzi J. Being a parent of a child with cancer : What psychosocial and family repercussions. 2022;32–5.
Akin-Odanye EO, Peate M, Asuzu CC, et al. Qualitative exploration of family caregivers' perception and experience caring for pediatric patients with cancer. J Psychosoc Oncol Res Pract. 2022;4(3):1–7.
Coyne I, Amory A, Gibson F, Kiernan G. Information-sharing between healthcare professionals, parents, and children with cancer : more than a matter of information exchange. Eur J Cancer Care (Engl). 2016;25:141–56.
Vieira AC, da Rocha Cunha ML, Neris RR, Nascimento LC, et al. Caring for a child with cancer: Impact on mother's health. Rev da Esc Enferm [Internet]. 2020;55(3):1731–8.
Shoghi M, Shahbazi B, Seyedfatemi N. The effect of the Family-Centered Empowerment Model (FCEM) on the care burden of the parents of children diagnosed with cancer. Asian Pacific J Cancer Prev. 2019;20(6):1757–64.
Tsai SH, Chang NT, Cheng SF, Lee YL. Reliability and Validity of a Chinese-Version Normalization Assessment Measure for Primary Caregivers of Children With Cancer. Cancer Nurs. 2020 Jul;43(4):311–8.
Lee AA, Piette JD, Heisler M, et al. Family members' experiences supporting adults with chronic illness: A national survey. Fam Syst Heal [Internet]. 2017 Dec;35(4):463–73.
Bulechek, Butcher, Dochteman, Wagner. Nursing intervention classification (NIC). 7th Editio. Missouri: Mosby Elsevier; 2018.
Creswell JW, Poth CN. Qualitative Inquiry & Research Design: Choosing Among Five Approaches. Fourth Edi. Thousand Oaks, California: Sage Publications Inc.; 2018. 646 p.
Knafl KA, Darney BG, Gallo AM, Angst DB. Parental perceptions of the outcome and meaning of normalization. Res Nurs Heal. 2010;33(2):87–98.
Wittenberg E, Saada A, Prosser LA. How illness affects family members: a qualitative interview survey. Patient-Patient-Centered Outcomes Res. 2013;6(4):257–68.
Franck LS, Wray J, Gay C, et al. Predictors of parent post-traumatic stress symptoms after child hospitalization on general pediatric wards: A prospective cohort study. Int J Nurs Stud. 2015;52(1):10–21.
Muscara F, Burke K, McCarthy MC, et al. Parent distress reactions following a serious illness or injury in their child: A protocol paper for the take a breath cohort study. BMC Psychiatry. 2015;15(1):1–11.
Wolf KMR. The Transition from Health to Illness : Best Practices For Education of Parents with Children Newly Diagnosed with Cancer. 2019;
Hockenberry M, Haugen M, Slaven A, et al. Pediatric Education Discharge Support Strategies for Newly Diagnosed Children With Cancer. Cancer Nurs. 2021 Nov;44(6):E520–30.
Sulkers E, Tissing WJE, Brinksma A, et al. Providing care to a child with cancer: A longitudinal study on the course, predictors, and impact of caregiving stress during the first year after diagnosis. Psychooncology. 2015;24(3):318–24.
Woodgate RL, Tailor K, Yanofsky R, Vanan MI. Childhood brain cancer and its psychosocial impact on survivors and their parents: A qualitative thematic synthesis. Eur J Oncol Nurs. 2015;20:140–9.
Bretones B. Psychosocial Repercussions of Childhood Cancer in Parents of Children and Adolescents Affected. Almeria, Spain: Doctoral Program: Health, Psychology and Psychiatry University of Almeria and Rovira I Virgili University; 2018.
LaRosa KN, Crabtree VM, Jurbergs N, Harman J. Behavioral sleep intervention to reduce bedsharing prior to stem cell transplant. J Clin Sleep Med. 2021 Feb 1;17(2):333–5.
Erker C, Yan K, Zhang L, et al. Impact of pediatric cancer on family relationships. Cancer Med. 2018;7(5):1680–8.
Nurhidayah I, Hendrawati S, Hasriyadhi DP. Quality of life of family caregivers of children with leukemia: A descriptive quantitative study. Belitung Nurs J. 2020;6(2):52–8.
Golics CJ, Basra MKA, Finlay AY, Salek S. The impact of disease on family members: A critical aspect of medical care. J R Soc Med. 2013;106(10):399–407.
Pan HT, Wu LM, Wen SH. Quality of Life and Its Predictors among Children and Adolescents with Cancer. Cancer Nurs. 2017;40(5):343–51.
Requena ML, Avery M, Feraco AM, et al. Normalization of Symptoms in Advanced Child Cancer: The PediQUEST-Response Case Study. J Pain Symptom Manage. 2022;63(4):548–62.
Knalf K, Deatrick D. The challenge of normalization for families of children with chronic conditions. Pediatr Nurs. 2022;28(1):49–56.
Verberne LM, Kars MC, Meeteren AYNS van, et al. Parental-experiences-and-coping-strategies-when-caring-for-a-child-receiving-paediatric-palliative-care-a-qualitative-study2019European-Journal-of-Pediatrics.pdf. 2019;1075–85.
Verberne LM, Kars MC, Meeteren AYNS van, et al. Parental Experiences and Coping Strategies when Caring for a Child Receiving Paediatric Palliative Care: A Qualitative Study. 2019;1075–85.
O'Neal C. The Development Of The Normalization Assessment Measure. Faculty of the Graduate School of Vanderbilt University. 2007.
McCloskey J, Bulechek G. Nursing intervention classification (NIC). 7th Editio. Missouri: Mosby Elsevier; 2018.
Refbacks
- There are currently no refbacks.
Copyright (c) 2024 Ikeu Nurhidayah
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
Email this article 
