Interventions to address disparities and barriers to pediatric cancer survivorship care: a scoping review

Mobley, Erin M.; Moke, Diana J.; Milam, Joel; Ochoa, Christian; Stal, Julia; Osazuwa, Nosa; Kemp, Jai; Bolshakova, Maria; Dinalo, Jennifer; Hempel, Susanne

doi:10.1007/s11764-021-01060-4

Cited by 13 publications

(8 citation statements)

References 36 publications

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“…The survivors discussed the emotional challenge of being different from healthy peers, with the implication that getting support from peers who had successfully navigated the transition and understood what it is like to be a survivor could be helpful. These results align well with the broader literature on barriers to recommended survivorship care, particularly during and after the transition to young adulthood [ 29 , 30 ]. Combined with the existing literature, our results suggested that a skills-based self-management intervention that also incorporates social support from a peer could address the needs of this population.…”

Section: Discussionsupporting

confidence: 86%

Development of a Self-management and Peer-Mentoring Intervention to Improve Transition Readiness Among Young Adult Survivors of Pediatric Cancer: Formative Qualitative Research Study

Viola¹,

Levonyan‐Radloff²,

Masterson³

et al. 2022

JMIR Form Res

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Background Childhood cancer survivors require lifelong risk-based follow-up care. It should be noted that less than one-third of adult survivors of childhood cancer report any survivor-focused care, and fewer than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to inadequate transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care. Interventions that focus specifically on improving the transition from parent-managed to self-managed care are needed. Theory and prior research suggest that targeting self-management skills and using peer mentoring may be innovative strategies to improve transition readiness. Objective This study aims to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors. Methods Intervention development occurred in 3 stages: formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care, content development using feedback from multiple stakeholders (AYA survivors, parents, and providers), and content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the social-ecological model of AYA readiness for transition, was used to identify themes and develop and refine the content for the intervention. Results A total of 19 AYA survivors participated in the formative research stage, and 10 AYA survivors, parents, and health care providers participated in the content development and refinement stages. The major barrier and facilitator themes identified included knowledge of cancer history and risks; relationships with health care providers; relationships with family members involved in care; emotions about health, follow-up care, and transfer of care; and lifestyle behaviors and life transitions. These themes were translated into 5 self-management modules: understanding treatment history and the survivorship care plan, managing health care logistics and insurance, communicating with health care providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Feedback from the key stakeholders indicated that the content was relevant but should include participative elements (videos and tailored feedback) to make the intervention more engaging. The AYA survivors were receptive to the idea of working with a peer mentor and expressed a preference for using SMS text messaging, telephone calls, or videoconference to communicate with their mentor. Conclusions Incorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer-mentoring intervention. AYA survivors confirmed the important targets for the intervention and facilitated design decisions in line with our target users’ preferences. The next step will be to conduct a single-arm trial to determine the feasibility and acceptability of the proposed intervention among AYA survivors of childhood cancer.

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Section: Discussionsupporting

confidence: 86%

Development of a Self-management and Peer-Mentoring Intervention to Improve Transition Readiness Among Young Adult Survivors of Pediatric Cancer: Formative Qualitative Research Study

Viola¹,

Levonyan‐Radloff²,

Masterson³

et al. 2022

JMIR Form Res

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“…There is growing recognition of the importance of identifying and intervening upon structural factors to reduce disparities and improve health outcomes for childhood cancer survivors. 11,54 Working toward this long-term goal, this study leveraged our community-academic partnership with Jacob's Heart, a CBO serving families of children with cancer in a rural region in California with low area socioeconomic status, majority H/L residents, and high rates of non-English language preference. We identified post-treatment challenges and linguistic, cultural, and geographic factors that may increase disparities, while illustrating the impact of CBO support to buffer some of these negative effects and potentially reduce disparities in this vulnerable population.…”

Section: Participant Feedback During Results-sharing Sessionsmentioning

confidence: 99%

A qualitative study of childhood cancer families’ post‐treatment needs and the impact of a community‐based organization in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region

Smith,

Teer,

Tolamatl Ariceaga

et al. 2023

Pediatric Blood & Cancer

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BackgroundIndividual‐ and population‐level socioeconomic disadvantages contribute to unequal outcomes among childhood cancer survivors. Reducing health disparities requires understanding experiences of survivors from historically marginalized communities, including those with non‐English language preference.ProcedureWe partnered with a community‐based organization (CBO) serving families of children with cancer in a rural region in California with low socioeconomic status and majority Hispanic/Latino (H/L) residents. We interviewed English‐ and Spanish‐speaking adolescent/young adult (AYA) childhood cancer survivors (≥15 years old, ≥5 years from diagnosis), parents, and CBO staff to evaluate post‐treatment needs and impact of CBO support. Data were analyzed qualitatively using applied thematic analysis. Themes were refined through team discussions with our community partners.ResultsTwelve AYAs (11 H/L, 11 bilingual), 11 parents (eight H/L, seven non‐English preferred), and seven CBO staff (five H/L, five bilingual) participated. AYAs (five female, seven male) were of median (min–max) age 20 (16–32) and 9 (5–19) years post diagnosis; parents (nine female, two male) were age 48 (40–60) and 14 (6–23) years post child's diagnosis. Themes included challenges navigating healthcare, communication barriers among the parent–AYA–clinician triad, and lasting effects of childhood cancer on family dynamics and mental health. Subthemes illustrated that language and rurality may contribute to health disparities. CBO support impacted families by serving as a safety‐net, fostering community, and facilitating H/L families’ communication.ConclusionsChildhood cancer has long‐lasting effects on families, and those with non‐English language preference face additional burdens. Community‐based support buffers some of the negative effects of childhood cancer and may reduce disparities.

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“…Most of the top barriers that impede the return for follow‐up care were focused on the organizational, community, and policy levels. A recent scoping review found 27 published interventions aimed at overcoming barriers and disparities in survivorship care; most addressed barriers at the patient level 24 . Social determinants of health assessment or screening may be helpful as a tool to ascertain barriers at other levels from the provider, health system, and community to policy as it relates to surveillance care for pediatric cancer survivor patients.…”

Section: Discussionmentioning

confidence: 99%

“…A recent scoping review found 27 published interventions aimed at overcoming barriers and disparities in survivorship care; most addressed barriers at the patient level. 24 Social determinants of health assessment or screening may be helpful as a tool to ascertain barriers at other levels from the provider, health system, and community to policy as it relates to surveillance care for pediatric cancer survivor patients. If available, survivor clinics may offer alternative options for the location of care, such as telemedicine or a satellite clinic, to lessen the transportation issues.…”

Section: Discussionmentioning

confidence: 99%

Clinic reported facilitators and barriers to pediatric cancer survivor care delivery among survivorship clinics: A fishbone analysis

Krauss

Mertens

Marchak

et al. 2023

Pediatric Blood & Cancer

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Background: Childhood cancer survivors need regular, long-term survivor care. The Children's Oncology Group (COG) recommends that pediatric patients receive ongoing, evidence-based surveillance for late effects, beginning 2 years after the completion of cancer therapy. However, at least a third of survivors are not engaging in long-term survivorship care. This study assessed facilitators and barriers to follow-up survivorship care through the perspectives of pediatric cancer survivor clinic representatives. Methods: As part of a hybrid implementation-effectiveness trial, a representative from 12 participating pediatric cancer survivor clinics completed a survey about site characteristics and a semi-structured interview on facilitators and barriers to survivor care delivery at their institution. Interviews were grounded in the socio-ecological model (SEM) framework and utilized a fishbone diagram to understand what facilitates and impedes survivor care. We ran descriptive statistics and conducted thematic analyses of the interview transcripts to create two meta-fishbone diagrams. Results: All participating clinics (N = 12) have existed for at least 5 years (mean = 15, median = 13, range = 3-31), and half (n = 6, 50%) reported seeing more than 300 survivors annually. In the fishbone diagram, the top facilitators were in the SEM domain of organization, specifically with familiar staff (n = 12, 100%), resource utilization (n = 11, 92%), dedicated survivorship staff (n = 10, 83%), and clinic processes (n = 10, 83%). Common barriers were across the domains of organization, community, and policy, which included distance/transportation to the clinic (n = 12, 100%), technology limits (n = 11, 92%), scheduling issues (n = 11, 92%), and insufficient funding/insurance (n = 11, 92%). Conclusion: Clinic staff and provider perceptions are instrumental in understanding multilevel contextual issues related to survivor care delivery for pediatric cancer survivor clinics. Future research can aid in developing education, processes, and services to promote cancer survivor follow-up care.

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Interventions to address disparities and barriers to pediatric cancer survivorship care: a scoping review

Cited by 13 publications

References 36 publications

Development of a Self-management and Peer-Mentoring Intervention to Improve Transition Readiness Among Young Adult Survivors of Pediatric Cancer: Formative Qualitative Research Study

Development of a Self-management and Peer-Mentoring Intervention to Improve Transition Readiness Among Young Adult Survivors of Pediatric Cancer: Formative Qualitative Research Study

A qualitative study of childhood cancer families’ post‐treatment needs and the impact of a community‐based organization in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region

Clinic reported facilitators and barriers to pediatric cancer survivor care delivery among survivorship clinics: A fishbone analysis

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