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.

Accessing support before or after a parent dies from cancer and young people's current wellbeing.

PURPOSE: To examine differences in distress and unmet needs between bereaved adolescent and young adult (AYA) offspring who accessed support before and after being bereaved by parental cancer, and to explore aspects of their cancer experience that influenced their help-seeking. METHODS: Phase 1: Surveys completed by AYAs (11-26 years) bereaved by parental cancer were subjected to analysis of covariance examining differences in distress and unmet needs between those who accessed support before (n = 159) and after (n = 212) parental bereavement. Phase 2: Semi-structured interviews explored the cancer experiences of bereaved offspring (n = 8) and factors that influenced their decision to seek support. RESULTS: Phase 1: There were no significant group differences in distress and unmet needs; however, older and female AYAs reported higher levels of distress and unmet needs. Interestingly, individuals who accessed support pre-bereavement were older on average (M = 17.35 years, SD = 3.26) than those who accessed support post-bereavement (M = 15.73 years, SD = 3.26). Phase 2: Three themes emerged centred on socio-emotional developmental changes during and after the cancer trajectory. These related to: participants' meaning-making and changes in understanding of the cancer experience, changing relationships and desires to fit in, and understanding of their own emotional needs. CONCLUSIONS: While no differences were found in unmet needs and distress between those who sought support pre- or post-bereavement, those seeking support pre-bereavement were older on average. Social and emotional development impacts how bereaved offspring access psychosocial support. Awareness of these issues can assist in improving support by ensuring services are age appropriate and families are sufficiently supported.

Levels of unmet needs and distress amongst adolescents and young adults (AYAs) impacted by familial cancer.

OBJECTIVE: To describe levels of, and relationships between, distress and psychosocial unmet needs in adolescents and young adults (AYAs) with a family member with cancer. METHODS: Adolescents and young adults (12-24 years old) with a living sibling or parent with cancer participated. Participants completed demographics, the Kessler 10 (K10) distress scale and the Sibling or Offspring Cancer Needs Instruments. Descriptive statistics were obtained for all measures, item-level frequencies were examined to identify common unmet needs, and relationships between distress and unmet needs were explored. RESULTS: Average sibling (N = 106) and offspring (N = 256) distress levels were in the high range (K10total = 22-30), with 29.6% and 31.6% in the very high range (K10total = 31-50), respectively. Siblings had mean = 19.7 unmet needs (range 0-45), 66% had ≥10 unmet needs, and 44% of the 45 needs were unmet on average. Offspring had mean = 22.4 unmet needs (range 0-47), 77% had ≥10 unmet needs, and 48% of the 47 needs were unmet on average. Strong positive correlations were found between K10 distress and the number of sibling/offspring unmet needs (r = 0.599 and r = 0.522, respectively, P = .00). CONCLUSIONS: Australian AYA siblings and offspring impacted by familial cancer experience high levels and numbers of unmet needs and substantial distress. Strong associations were found between increased distress and more unmet needs. Distress levels were comparable to AYAs seeking treatment for mental health issues. Insights into the type and number of needs experienced by AYA siblings and offspring will facilitate development and delivery of targeted, age-appropriate interventions, and resources for these vulnerable and underserved young people.

Correlates of unmet needs and psychological distress in adolescent and young adults who have a parent diagnosed with cancer.

OBJECTIVE: Young people who have a parent with cancer experience elevated levels of psychological distress and unmet needs. In this study, we examined the associations between demographics, cancer variables and family functioning and levels of distress and unmet needs amongst young people who have a parent diagnosed with cancer. METHODS: Young people aged 12-24 years with a parent with cancer (n = 255) completed the Offspring Cancer Needs Instrument (unmet needs), the Kessler-10 (distress) and the Family Relationship Index (family functioning), along with measures of demographics and cancer variables (such as age, sex and time since cancer diagnosis). Variables associated with distress and unmet needs (including unmet need domains) were assessed using multiple linear regression. RESULTS: Being female and older, having more unmet cancer needs and poorer family functioning were associated with increased distress. Having a father with cancer, a shorter time since diagnosis and poor family functioning were associated with increased unmet needs. Family conflict and expressiveness were particularly important components of family functioning. Having a parent relapse with cancer was also associated with unmet needs in the domains of practical assistance, 'time out' and support from other young people who have been through something similar. CONCLUSIONS: Delineating factors associated with increased distress and unmet needs assist in identifying at-risk young people allowing improved assessment and tailoring of support to improve the psychosocial outcomes of young people impacted by parental cancer.

Predictors of unmet needs and psychological distress in adolescent and young adult siblings of people diagnosed with cancer.

PURPOSE: Predictors of psychological distress and unmet needs amongst adolescents and young adults (AYAs) who have a brother or sister diagnosed with cancer were examined. METHODS: There were 106 AYAs (12-24 years old) who completed questionnaires covering demographics, psychological distress (Kessler 10), unmet needs (Sibling Cancer Needs Instrument) and family relationships (Family Relationship Index; Adult Sibling Relationship Questionnaire; Sibling Perception Questionnaire (SPQ)). Three models were analysed (demographic variables, cancer-specific variables and family functioning variables) using multiple linear regression to determine the role of the variables in predicting psychological distress and unmet needs. RESULTS: Unmet needs were higher for AYA siblings when treatment was current or a relapse had occurred. Higher scores on the SPQ-Interpersonal subscale indicating a perceived decrease in the quality of relationships with parents and others were associated with higher levels of distress and unmet needs. The age and gender of the AYA sibling, whether it was their brother or sister who was diagnosed with cancer, the age difference between them, the number of parents living with the AYA sibling, parental birth country, time since diagnosis, Family Relationship Index, Adult Sibling Relationship Questionnaire and the SPQ-Communication subscale did not significantly impact outcome variables. CONCLUSIONS: These results highlight the variables that can assist in identifying AYA siblings of cancer patients who are at risk and have a greater need for psychosocial assistance. Variables that may be associated with increased distress and unmet needs are reported to assist with future research. The results are also useful in informing the development of targeted psychosocial support for AYA siblings of cancer patients.

Psychometric evaluation of the Sibling Cancer Needs Instrument (SCNI): an instrument to assess the psychosocial unmet needs of young people who are siblings of cancer patients.

PURPOSE: The current study sought to establish the psychometric properties of the revised Sibling Cancer Needs Instrument (SCNI) when completed by young people who have a brother or sister with cancer. METHODS: The participants were 106 young people aged between 12 and 24 who had a living brother or sister diagnosed with any type or stage of cancer in the last 5 years. They were recruited from multiple settings. The initial step in determining the dimensional structure of the questionnaire was exploratory factor analysis and further assessment followed using Rasch analysis. Construct validity and test-retest reliability (n = 17) were also assessed. RESULTS: The final SCNI has 45 items and seven domains: information; practical assistance; "time out" and recreation; feelings; support (friends and other young people); understanding from my family; and sibling relationship. There was a reasonable spread of responses across the scale for every item. Rasch analysis results suggested that overall, respondents used the scale consistently. Support for construct validity was provided by the correlations between psychological distress and the SCNI domains. The internal consistency was good to excellent; Cronbach's alphas ranged from 0.78 to 0.94. The test-retest reliability of the overall measure is 0.88. CONCLUSIONS: The SCNI is the first measure of psychosocial unmet needs which has been developed for young people who have a brother or sister with cancer. The sound psychometric properties allow the instrument to be used with confidence. The measure will provide a substantial clinical benefit in highlighting the unmet needs of this population to assist with the prioritisation of targeted supportive care services and evaluating the impact of interventions targeted at siblings.

Psychometric evaluation of the Offspring Cancer Needs Instrument (OCNI): an instrument to assess the psychosocial unmet needs of young people who have a parent with cancer.

PURPOSE: The current study sought to establish the psychometric properties of the revised Offspring Cancer Needs Instrument (OCNI) when completed by a large sample of young people impacted by parental cancer recruited from multiple settings. METHODS: The psychometric properties were evaluated with 256 young people aged between 12 and 24 who had a parent or primary caregiver diagnosed with any type or stage of cancer within the last 5 years and who was still living. Exploratory factor analysis was conducted as an initial step in determining the dimensional structure of the questionnaire, and further assessment followed using Rasch analysis. Construct validity and test-retest reliability (n = 35) were also assessed. RESULTS: The final OCNI has 47 items and 7 domains: information, family issues, practical assistance, time out, feelings, support (friends) and support (other young people). There was a reasonable spread of responses across the scale for every item, and Rasch analysis results suggested that overall, respondents used the scale consistently. The retest correlation for the overall measure was 0.73. Support for construct validity was provided by the correlations between psychological distress and the OCNI domains. The internal consistency was excellent; the lowest domain Cronbach alpha is 0.89. CONCLUSIONS: The OCNI is the first measure of psychosocial unmet needs which has been developed specifically for young people who have a parent with cancer. It has sound psychometric properties and will provide substantial clinical benefit in identifying the unmet needs of this population to assist with the provision of targeted supportive care services.