Participation and Self-Management Strategies of Young Adult Childhood Cancer Survivors

2012 ◽  
Vol 33 (1) ◽  
pp. 21-30 ◽  
Author(s):  
Christine Berg ◽  
Robert J. Hayashi
Keyword(s):  
Young Adult ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Management Strategies ◽  
Childhood Cancer Survivors ◽  
Self Management

scholarly journals Identifying and exploring the self-management strategies used by childhood cancer survivors

2020 ◽  
Author(s):  
Morven C. Brown ◽  
Anna Haste ◽  
Vera Araújo-Soares ◽  
Roderick Skinner ◽  
Linda Sharp
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Management Strategy ◽  
Management Strategies ◽  
Childhood Cancer Survivors ◽  
Health Problems ◽  
Self Management ◽  
Increased Risk ◽  
Strategy Types

Abstract Purpose Childhood cancer survivors (CCSs) are at increased risk of chronic health problems. Effective self-management could help CCSs cope with the challenges that accompany survivorship and reduce their risk of developing further health problems. There is little evidence about the extent to which CCSs engage with self-management and the specific strategies they use. This study aimed to identify and explore the strategies that CCSs use to manage the consequences of cancer. Methods Twenty-four CCSs were recruited via follow-up clinics. Participants completed a semi-structured interview which was audio-recorded and transcribed. Directed content analysis was used to identify self-reported self-management strategies and categorise them into main self-management types. Results CCSs reported 118 specific self-management strategies which fell under 20 main self-management strategy types. All CCSs reported using several main self-management strategy types and specific self-management strategies. Main strategy types used by all CCSs were “adopting a healthy lifestyle”, “self-motivating”, “using support”, “reasoned decision-making” and “creating a healthy environment”. The most common specific self-management strategies were “receiving family support” (n = 20) and “attending follow-up and screening appointments” (n = 20). Conclusions This is the first study which has enabled CCSs to self-report the numerous strategies they employ to look after their health and well-being, contributing to a more comprehensive picture of self-management in CCSs. Implications for Cancer Survivors These findings may increase healthcare professionals’ awareness of the many ways in which CCSs manage their health and is a valuable first step in the development of a supported self-management intervention for CCSs in follow-up care.

scholarly journals Determining transition readiness in Swiss childhood cancer survivors – a feasibility study

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Maria Otth ◽  
Patrick Wechsler ◽  
Sibylle Denzler ◽  
Henrik Koehler ◽  
Katrin Scheinemann
Keyword(s):  
Health Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Self Management ◽  
Transition Readiness ◽  
Long Term Follow Up ◽  
Time Point

Abstract Background The successful transition of childhood cancer survivors (CCSs) from pediatric to adult long-term follow-up care is a critical phase, and determining the right time point can be challenging. We assessed the feasibility of the use of existing transition readiness tools in the context of the Swiss health care system, assessed partly transition readiness in Swiss CCSs, and compared our findings with Canadian CCSs for which these tools were originally developed. Methods We officially translated the Cancer Worry Scale (CWS) and Self-Management Skill Scale (SMSS) into German and integrated them into this cross-sectional study. We included CCSs attending the long-term follow-up (LTFU) clinic in the Division of Oncology-Hematology, Department of Pediatrics, Kantonsspital Aarau. We used descriptive statistics to describe transition readiness. Results We randomly recruited 50 CCSs aged ≥18 years at participation. The CCSs had a median CWS score of 62 (interquartile range 55–71), indicating a moderate level of cancer-related worry. Despite high self-management skills, some answers showed a dependency of CCSs on their parents. Our experience shows that the CWS and SMSS are easy for Swiss CCSs to use, understand, and complete. The interpretation of the results must take differences in health care systems between countries into account. Conclusions The translated CWS and SMSS are appropriate additional measures to assess transition readiness in CCSs. These scales can be used longitudinally to find the individual time point for transition and the completion by CCSs enables the health care team to individualize the transition process and to support the CCSs according to their individual needs.

scholarly journals A vulnerable age group: the impact of cancer on the psychosocial well-being of young adult childhood cancer survivors

2021 ◽  
Author(s):  
L. M. E. van Erp ◽  
H. Maurice-Stam ◽  
L. C. M. Kremer ◽  
W. J. E. Tissing ◽  
H. J. H. van der Pal ◽  
...  
Keyword(s):  
Young Adults ◽  
Young Adult ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Psychosocial Outcomes ◽  
Well Being ◽  
Childhood Cancer Survivors ◽  
Negative Impacts ◽  
Time Since Diagnosis

Abstract Purpose This study aimed to increase our understanding of the psychosocial well-being of young adult childhood cancer survivors (YACCS) as well as the positive and negative impacts of cancer. Methods YACCS (aged 18–30, diagnosed ≤ 18, time since diagnosis ≥ 5 years) cross-sectionally filled out the “Pediatric Quality of Life Inventory Young Adults” (PedsQL-YA), “Hospital Anxiety and Depression Scale” (HADS), and “Checklist Individual Strengths” (CIS-20R) to measure fatigue and survivor-specific “Impact of Cancer - Childhood Survivors” (IOC-CS), which measures the long-term impact of childhood cancer in several domains. Descriptive statistics (IOC-CS), logistic regression (HADS, CIS-20R), and ANOVA (PedsQL-YA, HADS, CIS-20R) were performed. Associations between positive and negative impacts of childhood cancer and psychosocial outcomes were examined with linear regression analyses. Results YACCS (N = 151, 61.6% female, mean age 24.1 ± 3.6, mean time since diagnosis 13.6 ± 3.8) reported lower HRQOL (− .4 ≤ d ≤ − .5, p ≤ .001) and more anxiety (d = .4, p ≤ .001), depression (d = .4, p ≤ .01), and fatigue (.3 ≤ d ≤ .5, p ≤ .001) than young adults from the general Dutch population. They were at an increased risk of experiencing (sub)clinical anxiety (OR = 1.8, p = .017). YACCS reported more impact on scales representing a positive rather than negative impact of CC. Various domains of impact of childhood cancer were related to psychosocial outcomes, especially “Life Challenges” (HRQOL β = − .18, anxiety β = .36, depression β = .29) and “Body & Health” (HRQOL β = .27, anxiety β = − .25, depression β = − .26, fatigue β = − .47). Conclusion YACCS are vulnerable to psychosocial difficulties, but they also experience positive long-term impacts of childhood cancer. Positive and negative impacts of childhood cancer were associated with psychosocial outcomes in YACCS. Screening of psychosocial outcomes and offering targeted interventions are necessary to optimize psychosocial long-term follow-up care for YACCS.

Evaluating sexual function in adolescent and young adult childhood cancer survivors.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e24180-e24180
Author(s):  
Jenna Sopfe ◽  
Rebekah Marsh ◽  
Leslie C. Appiah ◽  
James L. Klosky ◽  
Pamela N Peterson ◽  
...  
Keyword(s):  
Young Adult ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Screening Tool ◽  
Childhood Cancer Survivors ◽  
Adolescent And Young Adult ◽  
Structured Interviews ◽  
Written Information ◽  
Promising Tool ◽  
Prior Experiences

e24180 Background: Up to half of adolescent and young adult (AYA) childhood cancer survivors (CCS) experience sexual dysfunction (SD) as a result cancer or its treatment. SD in CCS is under-recognized, with low levels of routine screening due to barriers such as discomfort, time, and awareness. This study explores solutions to these barriers by describing AYA CCS preferences for implementation of screening for SD and evaluating the utility of a validated adult screening tool (PROMIS SexFS Brief) in this population. Methods: 16 AYA CCS (aged 15-24 years) completed semi-structured interviews followed by questionnaire completion. Interviews explored patients’ prior experiences with SD screening, along with preferences for screening type (e.g., discussion, screening tool), delivery modality, and timing. Patients then completed the PROMIS SexFS Brief while verbalizing their thoughts and providing open-ended responses to each item. Transcribed interviews were inductively coded and analyzed, guided by content analysis methodology. Results: This analysis represents 2/3 of planned interviews, and all will be completed by April 1, 2020. Interviews were performed with 11 females and 5 males (median age 21). Preliminary analysis demonstrates that participants had minimal experience with SD conversations, but had preferences regarding by whom, how, and when screening/education should occur. Who: Participants felt providers should have preexisting rapport with their patients; preferences existed for provider role and sex/age. How: A combination of written materials and in-person conversations was preferred. Several acknowledged a desire to have a “warning” that the conversation would happen, such as through a questionnaire. Participants did not have a preference regarding delivery modality (paper vs. online). The PROMIS SexFS Brief appeared to demonstrate content validity and acceptability in AYA CCS. When: Participants wanted education and screening to occur regularly throughout cancer therapy and survivorship. SD conversations should be tailored developmentally to the patient. Conclusions: Our results demonstrate a theme throughout interviews of the importance of patient/provider rapport. Further, while AYA CCS prefer in-person conversations about SD, conversations should be preceded by written information or a questionnaire to increase patient preparedness/comfort. Preliminary findings suggest that the PROMIS SexFS Brief is a promising tool for screening SD in this population; further studies evaluating use in clinical settings is warranted.

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