Piloting a new cross-sector model of care to support parents with cancer: feasibility and acceptability of the Parent Support Worker role.

PURPOSE: A new Parent Support Worker (PSW) service was piloted in three Australian hospitals. This study assesses the feasibility and acceptability (including preliminary effectiveness) of the service in supporting cancer patients with children. METHODS: A multi-site, mixed-methods study collected quantitative and qualitative data on the effectiveness of the service (pre post-test, n = 36), qualitative and quantitative data on acceptability of the service (survey, n = 43), and qualitative data on acceptability (semi-structured interviews, n = 13). Feasibility was assessed through rates of service uptake amongst referred parents. RESULTS: Of 1133 parents referred, 810 (71%) accepted to receive the service, suggesting high interest in PSW support. Interviewees likewise reported that the service was accessible and facilitated further referrals, indicating good feasibility. Surveys completed three months after accessing PSW support showed high acceptability and satisfaction. Additionally, there was preliminary evidence of service impacts: parents' distress, parenting concerns, parenting efficacy, and stress about situations of concern improved significantly from pre- to post-service (all p < 0.005). Interviewees further described how their emotional coping and confidence to support and communicate with their children had improved through contact with the service. CONCLUSION: The PSW service, integrated into a novel cross-sector model of care, showed to be feasible and acceptable to parent patients and their partners and improved psychological and parenting outcomes. The study suggests refinements to the service and the need for future larger studies to explore the effectiveness of the service in improving parents' outcomes. This study complements previous evidence on the implementation of the PSW service in hospitals.

Cancer awareness in Australian adolescents.

BACKGROUND: Over one-third of cancer cases are attributable to modifiable risk factors. Because health-related behaviors are often established at adolescence, it is important that adolescents understand the risks and lifestyle decisions that may reduce their chances of developing cancer. This study aims to identify the levels of cancer awareness of adolescents in Australia. METHODS: Paper questionnaires were used to collect information about baseline levels of cancer awareness. These questionnaires included socio-demographic questions and the Cancer Awareness Measure (CAM) with slight modifications to ensure their suitability for the Australian adolescent population. Students aged 11 to 19 years were recruited from 13 Australian high schools between 2016 and 2019. RESULTS: A total of 766 adolescents (58% female, mean age = 14.5 years) completed the questionnaires. Adolescents' cancer awareness was low. Adolescents who knew someone with cancer recognized significantly more cancer risk factors and cancer warning signs than those who did not know someone with cancer (t (756) = 2.35, p = .019; t (747) = 5.57, p = .001). Those from high Index of Community Socio-Educational Advantage (ICSEA) schools significantly recognized more cancer risk factors than those from low ICSEA schools (t (764) = 2.42, p = .016). Females recognized significantly more warning signs than males (t (583) = 3.11, p = .002) and students from senior high school grades recognized more warning signs than those from junior grades (t (754) = 2.24, p = .02). Most adolescents (78%) were aware of skin cancer as one of the most common cancers in Australia, however half or less were aware of other common cancers. Although most adolescents would seek medical help in the presence of possible cancer symptoms as soon as possible, approximately 20% of them would not see a doctor promptly. Emotional barriers were the most common reasons to delay seeing a doctor (56%), for example "being worried about hearing bad news" (27%). CONCLUSIONS: Australian adolescents show poor awareness of cancer risk factors and cancer warning signs. A number of demographic and experience factors were found to be related to lower cancer awareness. Education is essential to raise cancer awareness, promote healthy lifestyles from adolescence and avoid a preventable cancer diagnosis.

Cancer patients as parents: implementation of a cross sector service for families with adolescent and young adult children.

BACKGROUND: Cancer patients who are parents show concerns about their ability to parent following diagnosis, and their adolescent and young adult (AYA) children have a need for improved cancer communication within the family. However, psychosocial support for families affected by parental cancer is not routinely available. This study explores the implementation of the Parent Support Worker (PSW) role, as part of a new cross sector model of care to support parent patients, their partners, and AYA children. METHODS: Two PSWs, social workers and healthcare staff (n = 26) from three hospitals participated in audio-recorded, semi-structured interviews about implementation of the PSW role. Template Analysis and Normalization Process Theory were used to analyze the interviews. Data on PSW service activity and referrals of AYA to support from a community organization were analyzed using descriptive statistics. RESULTS: Eleven themes categorized into enablers and barriers of implementation were identified. Regarding acceptability of the role, three enablers (social workers' understanding of the PSW role increasing, easy and prompt access of staff and parent patients to PSWs, satisfaction with the PSW role) and one barrier (communication related confusion and frustration about the PSW role) were identified. Additionally, three enablers (the PSW role fills gaps in parenting-focused support and continuity of care, the PSW role alleviates social workers' workload, negotiation helped to define responsibilities) and one barrier (fear of social work roles to be overtaken by PSWs) for appropriateness of the role were found. Finally, two enablers of feasibility of the role (PSWs and social workers co-managing the work, higher confidence from hospital staff to talk about children in the family) and one barrier (lack of systematic identification and referral processes) were identified. Across hospitals, the number of referrals of AYA children to the community organization increased between 2.7 and 12 times nine months post-introduction of the service. CONCLUSIONS: Established in response to identified gaps in oncology care for parents with cancer, their partners and AYA children, a novel cross-sector model of care was acceptable, appropriate, and feasible. Barriers and enablers to implementation identified in this study need to be considered when designing and implementing similar services.