论文部分内容阅读
Background: Completing childhood cancer treatment can be a celebrated milestone and a time of need for survivors and their families.Much research has investigated family support and information needs during treatment and longterm survivorship.However, little research has evaluated needs in the recently off treatment period, when patients are waiting to make the transition from cancer patient to long-term survivor.Objective: To investigate the information/support needs of childhood cancer survivors who had recently completed treatment but were not yet eligible for long-term follow-up (i.e.<5 years post-diagnosis), and their family members.Methods: All family members of patients who finished treatment at Sydney Children's Hospital between 2008 and 2010 were invited to participate in an individual semi-structured telephone interview (minimum age 12 for patient/sibling participants).Interviews were analysed using the conceptual framework of Miles and Huberman.Emergent themes were cross-tabulated and counts were used to moderate researcher bias.Results: 106 individuals participated: 19 survivors (mean age:l 6.1), 41 mothers, 31 fathers and 15 siblings (response rate=41%).50% of families lived in rural/remote locations.Participants reported appreciation for the wide range of medical, emotional and practical support received after treatment.However, despite needing significant support at this time, many were reluctant to actively ask for help if it deflected resources from patients currently receiving treatment.Post-treatment medical support from oncologists, nurses and family doctors was appraised highly; although appraisals of support from psycho-social services were mixed.All survivors reported satisfaction with information received post-treatment, however many parents and siblings identified specific unmet information needs.The most frequently endorsed topics included: fertility, family cancer risk and how to monitor for recurrence.The most preferred interventions to address information needs were: online support, an information booklet and a question prompt sheet (preferences differed by family-member groups).Rural/remote families reported the highest support/information needs.Conclusions: As needs differed by family member, interventions tailored specifically for young survivors, mothers, fathers and siblings are required.While cancer survivors and their families may not demand support post-treatment, they may 'suffer in silence' feeling they should allow health professionals to focus their care on the next generation of on-treatment patients.