Childhood Cancer Survivors' Adherence to Healthcare Recommendations Made Through a Distance-Delivered Survivorship Program.

Purpose: Ongoing survivorship care allows childhood cancer survivors the opportunity to address treatment-related health problems and improve their quality of life. However, many survivors do not adhere to their healthcare professionals' recommendations and the factors supporting their adherence remain unclear. Patients and Methods: Long-term childhood cancer survivors completed the "Re-engage" program, which assessed survivors' heath needs and provided individualised recommendations for health interventions and surveillance developed by an expert multi-disciplinary team (MDT). We measured survivors' recall of, and adherence to, their individualised healthcare recommendations at one and six months post-intervention. We conducted a series of univariate negative binomial regressions to investigate factors associated with the total number of recommendations that were correctly recalled and adhered to. Results: We analysed the data of 25 childhood cancer survivors who participated in Re-engage (mean age = 31.9 years). On average, survivors were provided with 6.6 recommendations (range = 1-11). Survivors accurately recalled receiving 3.0 recommendations at one month post-intervention and 1.9 at six months. Survivors had adhered to an average of 1.3 recommendations by six-month follow-up. In total, 56% of participants reported that they did not adhere to any recommendations. By six-month follow-up, greater adherence to MDT recommendations was associated with having a history of a second cancer (B = 1.391; 95% confidence interval [CI], 0.686 to 2.097; p < 0.001) and reporting a greater level of worry about late effects (B = 1.381; 95% CI, 0.494 to 2.269; p = 0.002). Conclusion: Survivors reported sub-optimal levels of adherence and demonstrated limited recall of their healthcare recommendations. Effective communication of recommendations and clear discussion of barriers limiting adherence, coupled with late effects education, may be critical to ensure that survivors engage with their recommendations, to improve their quality of life and health outcomes. Trial Registration Number: ACTRN12618000194268.

Parents' Perspectives on Their Child's Social Experience in the Context of Childhood Chronic Illness: A Qualitative Study.

PURPOSE: Many children suffer from a serious chronic illness. These children have greater risks of developing psychosocial difficulties, associated with school absenteeism and missed social opportunities. Through parents' perspectives, this study aimed to gain a holistic understanding of children's social experience in the context of chronic illness. DESIGN AND METHODS: We conducted semi-structured interviews with parents of a child with a serious chronic illness exploring their child's school experience. Two researchers coded social experiences using an iterative process, involving regular team discussions. Theoretical thematic analysis and content analysis were both performed, using the social ecological model as a theoretical framework. RESULTS: Forty-nine parents participated (43 mothers, 6 fathers; child mean age 11.51 years; 21 female children, 28 male children; 6 different chronic illness groups). According to parents, the main facilitators to the social experience of their children involved parents themselves, the school, social networks and peers, as they were all able to provide social support and opportunities for social development. However, peers were also a source of bullying and peer pressure, and sometimes lacked understanding and empathy. CONCLUSIONS: As shown by the social ecological model, social functioning between chronically-ill children and their peers can be influenced by many factors. More specifically, parents have expressed their ability for promoting positive experiences between their children and their peers. Practice Implications Considering the complexity of social functioning, future research and interventions should provide holistic support for children with chronic illnesses.

Talking About Cancer Among Adolescent and Young Adult Cancer Patients and Survivors: A Systematic Review.

Communication plays an essential role in social relationships. Yet it is unclear how young cancer patients and survivors communicate with peers, and whether this contributes to increased rates of social difficulties. We aimed to analyze how childhood cancer patients and survivors communicate about their cancer with family and peers. We systematically searched Medline, Embase and PsycINFO for peer-reviewed studies on cancer-related communication among patients and survivors (any cancer, <25 years at diagnosis). We screened 309 articles, and included 6 qualitative studies. Studies were assessed using a standardized quality assessment tool. Participants were adolescents and young adults, 16-34 years of age at the time of study. Included studies related to different forms of cancer-related communication, benefits, and challenges. We found that cancer-related communication was an individual, complex process, addressing medical, existential, and emotional aspects of cancer. Communication occurred on a spectrum with variation in who information was shared with, as well as differences in the frequency at which information was shared, and the amount and type of information shared. Communication often occurred at uncertain or significant times for participants, or was initiated by others. Communicating about cancer yielded benefits as a coping strategy, prompted social support, and appeared central to significant relationships. Barriers to communication, including fear of stigma and poor peer reactions, hindered willingness to disclose. The number of studies analyzing this topic was limited. Communicating about cancer is a significant yet complex process for young patients and survivors. Further research is needed to complement the existing literature and to establish the evidence base for the development of future effective interventions promoting social and communication skills.