"You don't accept he's completely ok": a reflexive thematic analysis of parents' roles in monitoring their child's health and symptoms after finishing childhood cancer treatment

被引:1
作者
Loecher, Nele [1 ]
Jordan, Abbie [2 ]
Spunt, Sheri L. L. [3 ]
Simon, Pamela [4 ]
Simons, Laura E. E. [5 ]
Dahl, Gary [3 ,4 ]
Kosyluk, Kristin [1 ]
Heathcote, Lauren C. C. [6 ]
机构
[1] Univ S Florida, Dept Mental Hlth Law & Policy, 13301 Bruce B Downs Blvd, Tampa, FL 33613 USA
[2] Univ Bath, Dept Psychol & Ctr Pain Res, Bath, Somerset, England
[3] Stanford Univ, Sch Med, Dept Pediat, Stanford, CA USA
[4] Lucile Packard Childrens Hosp Stanford, Palo Alto, CA USA
[5] Stanford Univ, Sch Med, Dept Anesthesiol Perioperat & Pain Med, Stanford, CA USA
[6] Kings Coll London, Inst Psychiat Psychol & Neurosci, Hlth Psychol Sect, London, England
关键词
Parent perspectives; Adolescents and young adult; Survivorship; Childhood cancer; ADULT SURVIVORS; PERCEPTIONS; CARE; UNCERTAINTY; TRANSITION; APPRAISAL; DISTRESS; FATIGUE; MOTHERS; MODEL;
D O I
10.1007/s11764-023-01353-w
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Objectives/purposeChildhood cancer survival brings continued mental and physical health challenges both for the child and for the family. In this study, we investigated how parents viewed their roles in their child's health and symptom monitoring during the survivorship period.MethodsTwenty-one parents of childhood cancer survivors (n = 18 mothers; parent mage = 49.78 years, child mage = 18.50 years; range = 12-25 years), whose children were at least one year off-treatment (m = 3.67 years; SD = 2.25; various diagnoses), completed semi-structured interviews. Interviews were recorded, transcribed, and analyzed using reflexive thematic analysis.ResultsAnalyses generated three themes which reflect roles that parents may adopt in the context of monitoring symptoms in their childhood cancer survivor. "Vigilant Mama and Papa" (theme 1) described parents who expressed a strong sense of responsibility for protecting their child's health during survivorship resulting in careful monitoring of their child's symptoms and health. "Pragmatic Mamas and Papas" (theme 2) described parents who adopted an approach to symptom and health monitoring that emphasized moving past cancer and focusing on the future. Finally, "Encouraging Mamas and Papas" (theme 3) described parents who focused on educating and preparing their child to develop an autonomous approach to health and symptom self-monitoring as they transitioned to survivorship and adulthood.ConclusionParents take on varying roles in monitoring their child's symptoms and health after finishing childhood cancer treatment.Implications for Cancer SurvivorsUnderstanding the ways in which parents continue to be involved in their child's cancer journey helps researchers develop interventions to support dyadic coping in survivorship.
引用
收藏
页码:950 / 959
页数:10
相关论文
共 28 条
[1]  
Bakula D.M., 2019, J PEDIATR PSYCHOL, V44
[2]   Young Adult Cancer Survivors' Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care [J].
Berg, Carla J. ;
Stratton, Erin ;
Esiashvili, Natia ;
Mertens, Ann .
JOURNAL OF CANCER EDUCATION, 2016, 31 (03) :430-442
[3]  
Braun V., 2013, SUCCESSFUL QUALITATI
[4]   Reflecting on reflexive thematic analysis [J].
Braun, Virginia ;
Clarke, Victoria .
QUALITATIVE RESEARCH IN SPORT EXERCISE AND HEALTH, 2019, 11 (04) :589-597
[5]   One size fits all? What counts as quality practice in (reflexive) thematic analysis? [J].
Braun, Virginia ;
Clarke, Victoria .
QUALITATIVE RESEARCH IN PSYCHOLOGY, 2021, 18 (03) :328-352
[6]   Transition from child to adult health services: A qualitative study of the views and experiences of families of young adults with intellectual disabilities [J].
Brown, Michael ;
Higgins, Anna ;
MacArthur, Juliet .
JOURNAL OF CLINICAL NURSING, 2020, 29 (1-2) :195-207
[7]   Reflexive Thematic Analysis for Applied Qualitative Health Research [J].
Campbell, Karen A. ;
Orr, Elizabeth ;
Durepos, Pamela ;
Nguyen, Linda ;
Li, Lin ;
Whitmore, Carly ;
Gehrke, Paige ;
Graham, Leslie ;
Jack, Susan M. .
QUALITATIVE REPORT, 2021, 26 (06) :2011-2028
[8]   Parent Perceptions of Illness Uncertainty and Child Depressive Symptoms in Juvenile Rheumatic Diseases: Examining Caregiver Demand and Parent Distress as Mediators [J].
Chaney, John M. ;
Gamwell, Kaitlyn L. ;
Baraldi, Amanda N. ;
Ramsey, Rachelle R. ;
Cushing, Christopher C. ;
Mullins, Alexandria J. ;
Gillaspy, Stephen R. ;
Jarvis, James N. ;
Mullins, Larry L. .
JOURNAL OF PEDIATRIC PSYCHOLOGY, 2016, 41 (09) :941-951
[9]   Why Mothers Accompany Adolescent and Young Adult Childhood Cancer Survivors to Follow-up Clinic Visits [J].
Doshi, Kinjal ;
Kazak, Anne E. ;
Hocking, Matthew C. ;
DeRosa, Branlyn Werba ;
Schwartz, Lisa A. ;
Hobbie, Wendy L. ;
Ginsberg, Jill P. ;
Deatrick, Janet .
JOURNAL OF PEDIATRIC ONCOLOGY NURSING, 2014, 31 (01) :51-57
[10]   Posttraumatic stress and general distress among parents of children surviving a brain tumor [J].
Fuemmeler, BF ;
Mullins, LL ;
Marx, BP .
CHILDRENS HEALTH CARE, 2001, 30 (03) :169-182