ABSTRACT
OBJECTIVE: Suboptimal nutritional adherence in adolescents with cystic fibrosis (awCF) has been associated with lower lung function. AwCF often have more independence in dietary decisions than younger children, yet little research has examined how adolescent decision-making relates to nutritional adherence. This study explored whether components of adolescent decision-making involvement facilitate enzyme and caloric adherence in awCF. METHODS: 37 families participated and completed study procedures. AwCF and caregivers completed electronic surveys, including the Decision-Making Involvement Scale (DMIS). The DMIS evaluated awCF behaviors during nutrition-related decision-making/discussions with caregivers using DMIS subscales: Child Seek (asking for help/advice from caregivers), Child Express (awCF stating opinions) and Joint/Options (awCF participating in joint decision-making or caregiver providing options). AwCF completed 2, 24-hr diet recalls via videoconferencing/phone to estimate adherence. Chart reviews collected medical information. DMIS subscales were regressed onto enzyme and caloric adherence. RESULTS: 43% of awCF met calorie recommendations; 48.6% took all enzymes as prescribed. Caloric adherence was positively correlated with adolescent- and parent-reported Child Seek (r = 0.53; r = 0.36) and adolescent-reported Joint/Options (r = 0.41). Per adolescent-report, the caloric adherence regression model was significant, with Child Seek contributing unique variance in caloric adherence (ß = .62, p = .03). Parent-reported adolescent-decision-making involvement significantly predicted caloric adherence, but none of the subscales contributed unique variance. No other regressions were significant. CONCLUSIONS: When awCF participated in nutrition-related discussions with a caregiver, especially with questions, caloric adherence was better. Future research should examine whether family factors influence these results. AwCF are encouraged to ask questions in nutrition discussions.
ABSTRACT
Plain communities present with a higher risk of sustaining burn injuries. Yet, little is known about the hospital-community partnerships with Plain caretakers to facilitate culturally competent burn care. The current study provides a qualitative analysis of Plain caretakers' perspectives on an existing hospital-community partnership for facilitating culturally sensitive burn care and their perspectives on the ongoing physical, structural, and behavioral health needs of this population. Twelve Plain community caregivers who serve on a burn wound treatment team or an oil therapy team within their community took part in a focus group interview. Caretakers identified as White, were majority male (83%), and resided in Plain communities. Retrospective thematic analysis was used to analyze the data. Five major themes (ie, informational needs, strengths of Plain community burn care, behavioral health concerns, behavioral health resources, and preferred teaching methods) evolved. Results revealed that Plain caregivers displayed an openness to learning about recommended burn care from the medical providers. Caretakers also cited their traditional (homeopathic) burn care procedures as perceived strengths, while simultaneously maintaining that their relationship with the hospital is a valuable part of life-saving burn care. Regarding their behavioral health needs, caretakers highlighted difficulties in helping their children cope with burn injuries and pain during rehabilitation and treatment. Other topics discussed included social support and cultural factors that impact the delivery of burn care to Plain communities from non-Plain providers. These results provide important considerations that other burn centers may consider when establishing similar partnerships to deliver of culturally competent medicine for Plain burn survivors.
