Social adjustment of adolescent cancer patients transitioning off active treatment: A short‐term prospective mixed methods study

Chan, Sherilynn F.; Hoag, Jennifer A.; Karst, Jeffrey; Bingen, Kristin

doi:10.1002/pbc.27530

Cited by 9 publications

(12 citation statements)

References 63 publications

(118 reference statements)

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“…Particularly after the end of treatment, affected families and children experience declining social support and care [39,40]. Hence, it can be important to communicate openly with peers and staff in school or nursery to mobilize social support networks.…”

Section: Discussionmentioning

confidence: 99%

Parents’ perception of their children’s process of reintegration after childhood cancer treatment

et al. 2020

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Our objective was to further the understanding of the process of reintegration of childhood cancer patients after treatment and to identify factors influencing that process. Using a qualitative approach, we conducted 49 interviews with parents (n = 29 mothers, n = 20 fathers) from 31 families with a child (<18 years) with leukemia or CNS tumor. Interviews were conducted about 16 to 24 months after the end of the treatment. We used a semi-structured interview guideline and analyzed the data using content analysis. Average age of pediatric cancer patients was 5.5 years at the time of diagnosis; mean time since diagnosis was 3.5 years. Parents reported immediate impact of the disease on their children. Reintegration had gone along with delayed nursery/school enrollment or social challenges. In most cases reintegration was organized with a gradual increase of attendance. Due to exhaustion by obligatory activities, reintegration in leisure time activities was demanding and parents reported a gradual increase of activity level for their children. Parents described several barriers and facilitators influencing the reintegration process into nursery/school and leisure time activities (structural support, social support, health status, intrapersonal aspects). Although many children reintegrate well, the process takes lots of effort from parents and children. Childhood cancer survivors and their families should be supported after the end of intensive treatment to facilitate reintegration.

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Section: Discussionmentioning

confidence: 99%

Parents’ perception of their children’s process of reintegration after childhood cancer treatment

et al. 2020

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“…Nonetheless, certain subgroups of adolescent patients/survivors did endorse social isolation and challenges with connection (Chan et al, 2019;van Riel et al, 2014). For example, adolescent survivors of childhood cancer demonstrated higher rates of social withdrawal compared to sibling controls in a large longitudinal cohort study (Krull et al, 2010).…”

Section: The Spectrum Of Social Connection and Isolationmentioning

confidence: 99%

“…A considerable number of factors have been associated with poor social quality of life (QOL) including the experience of social isolation and disconnection. These include: female sex (Mertens et al, 2014;Vlachioti et al, 2016;Wesley et al, 2013); older age at diagnosis (Yallop et al, 2013); low household income/socioeconomic status (Schultz et al, 2007;Yallop et al, 2013); being overweight or obese (Brinkman et al, 2016); sensory impairment (Brinkman et al, 2016); cognitive impairment (Schulte et al, 2018); physical limitations (Schulte et al, 2018); diagnosis and treatment intensity (Bradley Eilertsen et al, 2012;Brinkman et al, 2016;Schulte et al, 2018;Yallop et al, 2013); accelerated psychological maturity (Anthony et al, 2019); challenges with identity during the transition from patient to survivor (Jones et al, 2011;Woodgate, 2006); physical disconnection from peers during treatment (Choquette et al, 2016;van Riel et al, 2014); lack of peer understanding (Chan et al, 2019); and changes in physical appearance (Kostak et al, 2019;McLoone et al, 2011;Williamson et al, 2010).…”

Section: Factors That Contribute To Social Isolation and Diminish Connectednessmentioning

confidence: 99%

Social isolation and connection in adolescents with cancer and survivors of childhood cancer: A systematic review

Pahl

Steinberg

2021

Journal of Adolescence

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Introduction: Cancer may cause signiicant disruptions in normal adolescent development particularly in social domains. Both treatment and survivorship pose challenges to fostering social connections. To better understand these challenges, we conducted a systematic literature review of the experience of social isolation and connectedness in adolescents with cancer and adolescent survivors of childhood cancer. Methods: A systematic review of the scientiic literature was conducted following PRISMA Guidelines. Eligible articles included original peer-reviewed research published in English between January 2000 and April 2020 that reported on social domains of patients and survivors of cancer between the ages of 10-21. Initial database search identiied 4606 articles with 43 studies meeting inclusion criteria. Results: Results were synthesized into four domains: (1) the prevalence of connectedness/isolation; (2) risk factors associated with social isolation; (3) protective factors against social isolation; (4) the impact of social isolation on psychological health. Overall, adolescent patients and survivors of cancer have satisfactory social connectedness. However, certain subgroups including those with central nervous system tumors are at higher risk of social isolation. Conclusions: In general, adolescent cancer patients and survivors report levels of social connectedness consistent with healthy adolescent population norms. The risk and protective factors identiied in this review may help serve as important indicators for psychosocial screening and interventions. These indings are particularly relevant in the COVID-19 era as all adolescents face challenges to social connections and psychosocial development.

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“…12,13 Other studies have defined it as social adjustment, which includes social competence, peer acceptance and quality of friendships. [14][15][16] Previous reviews focused on AYA cancer have also used the term social well-being, which encompasses education, employment, financial burden, social isolation, peer relationships and functioning in intimate or romantic relationships. 1,17 Use of such variable definitions can have significant implications for assessing and addressing social functioning concerns.…”

Section: Introductionmentioning

confidence: 99%

Determinants of social functioning among adolescents and young adults with cancer: A systematic review

et al. 2021

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Objectives: Survivors of adolescent and young adult (AYA) cancer report deficits in social functioning relative to healthy peers. Identifying factors related to their social functioning is critical to improve their long-term social outcomes. This review addressed: (1) How is social functioning defined and measured among studies of AYAs who have had cancer? (2) What factors have quantitatively/qualitatively are associated with/predictors of social functioning? and (3) What associated factors/ predictors of social functioning are modifiable and amenable to intervention? Methods: A systematic review was conducted to identify publications from 2000 to 2021, meeting these criteria: (1) mean/median age at diagnosis/treatment 13-40, (2) assessed social functioning with a validated measure and included factors associated with/predictive of social functioning and/or qualitatively assessed young people's perceptions of factors related to their social functioning and (3) was peerreviewed/published in English. Results: Thirty-seven publications were included. Definitions and measures of social functioning varied, and factors related to social functioning varied based on definition. Factors most commonly associated with decreased social functioning included treatment status (receiving or completed treatment), poor physical functioning, depression, negative body image, engaging in social comparisons, social/ cultural stigma around cancer, and fatigue. Increased social functioning was most commonly associated with social support and the quality/age-appropriateness of care.Conclusions: Social functioning is multidimensional construct for AYAs diagnosed with cancer and may not be adequately assessed with measures of adjustment or quality of life. Future studies should clarify how to optimally define and measure social functioning in this population, to ensure their functioning can be protected and promoted long-term.

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Social adjustment of adolescent cancer patients transitioning off active treatment: A short‐term prospective mixed methods study

Cited by 9 publications

References 63 publications

Parents’ perception of their children’s process of reintegration after childhood cancer treatment

Parents’ perception of their children’s process of reintegration after childhood cancer treatment

Social isolation and connection in adolescents with cancer and survivors of childhood cancer: A systematic review

Determinants of social functioning among adolescents and young adults with cancer: A systematic review

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