Purpose <p>Social support can ameliorate the challenges faced by childhood cancer survivors and their parents as survivors transition into adulthood. This study examined social support dynamics within adolescent/young adult (AYA)-parent dyads by comparing their support needs and gaps.</p> Methods <p>This qualitative study was conducted in collaboration with a community-based organization serving predominately socioeconomically disadvantaged, Hispanic/Latino (H/L), rural families affected by childhood cancer in California. English- and Spanish-speaking AYA childhood cancer survivors (≥ 15&#xa0;years old, ≥ 5&#xa0;years from diagnosis) and parents were interviewed. Transcripts were analyzed qualitatively using applied thematic analysis.</p> Results <p>Seven AYA-parent dyads (six H/L and bilingual or Spanish speaking only) were interviewed. AYAs (six male, one female) had a median (min–max) age of 19 (16–23) and&#xa0;were 14&#xa0;years post-diagnosis (6–17). Forms of social support fell into emotional, instrumental (i.e., tangible assistance), and informational domains. Family and faith were shared sources of emotional support for parents and AYAs. Although AYAs identified parents as consistent sources of emotional support, parents frequently discussed inadequate family support and unmet emotional needs. Parents also more commonly discussed gaps in instrumental support. AYAs often lacked cancer-related knowledge, with parents serving as primary sources of informational support. Parents worried about children’s readiness to transition to adult-focused survivorship care.</p> Conclusion <p>Parents experienced gaps in emotional and instrumental support not noted by AYAs, suggesting parents help buffer these experiences. AYAs’ reliance on parents for informational support in the post-treatment period highlights an opportunity to build upon supportive parent-AYA relationships through dyad-focused education to facilitate adult-focused survivorship care transitions.</p>

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A dyad-based analysis of social support dynamics among adolescent/young adult cancer survivors and their parents from a predominately Hispanic/Latino, socioeconomically disadvantaged, and rural population

  • Rebecca M. Lewinsohn,
  • Catherine Benedict,
  • Mary Smith,
  • Heidi Boynton,
  • Lidia Schapira,
  • Stephanie M. Smith

摘要

Purpose

Social support can ameliorate the challenges faced by childhood cancer survivors and their parents as survivors transition into adulthood. This study examined social support dynamics within adolescent/young adult (AYA)-parent dyads by comparing their support needs and gaps.

Methods

This qualitative study was conducted in collaboration with a community-based organization serving predominately socioeconomically disadvantaged, Hispanic/Latino (H/L), rural families affected by childhood cancer in California. English- and Spanish-speaking AYA childhood cancer survivors (≥ 15 years old, ≥ 5 years from diagnosis) and parents were interviewed. Transcripts were analyzed qualitatively using applied thematic analysis.

Results

Seven AYA-parent dyads (six H/L and bilingual or Spanish speaking only) were interviewed. AYAs (six male, one female) had a median (min–max) age of 19 (16–23) and were 14 years post-diagnosis (6–17). Forms of social support fell into emotional, instrumental (i.e., tangible assistance), and informational domains. Family and faith were shared sources of emotional support for parents and AYAs. Although AYAs identified parents as consistent sources of emotional support, parents frequently discussed inadequate family support and unmet emotional needs. Parents also more commonly discussed gaps in instrumental support. AYAs often lacked cancer-related knowledge, with parents serving as primary sources of informational support. Parents worried about children’s readiness to transition to adult-focused survivorship care.

Conclusion

Parents experienced gaps in emotional and instrumental support not noted by AYAs, suggesting parents help buffer these experiences. AYAs’ reliance on parents for informational support in the post-treatment period highlights an opportunity to build upon supportive parent-AYA relationships through dyad-focused education to facilitate adult-focused survivorship care transitions.