Dataset Information

The Oncology Family Forum: Collaborating With Families to Codesign Pediatric Oncology Services.

ABSTRACT: The Oncology Services Group at Queensland Children's Hospital established an Oncology Family Forum in 2018 to enable codesign of service improvements. A total of 26 family members attended the first 4 Forums, with between 12 and 15 attendees at each. Attendees represented a range of diagnoses, were 85% female, 85% resided within 40 km of the tertiary center, and 26% were on-treatment. In a survey of attendees, 83% agreed that the Forum had improved families' service experience and 92% supported the codesign partnership and the exploration of their suggestions. A small proportion (25%) of attendees disagreed that there was enough time to share, 17% disagreed that all their questions were answered, and 17% disagreed that the Forum represented views of regional families. Respondents identified collaboration, improving understanding and communication as positive aspects of the Forums. Forums will continue to be offered regularly, augmented by videoconferencing (particularly during the COVID-19 pandemic), written responses to family questions and special interest discussion groups. The new collaborations and programs that have been initiated, codesigned, and progressed through these Forums will continue to be the focus of service delivery and quality improvements.

SUBMITTER: Radford C

PROVIDER: S-EPMC7786683 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Publications

The Oncology Family Forum: Collaborating With Families to Codesign Pediatric Oncology Services.

Radford Claire C Slater Penelope J PJ Fielden Philippa P

Journal of patient experience 20200820 6

The Oncology Services Group at Queensland Children's Hospital established an Oncology Family Forum in 2018 to enable codesign of service improvements. A total of 26 family members attended the first 4 Forums, with between 12 and 15 attendees at each. Attendees represented a range of diagnoses, were 85% female, 85% resided within 40 km of the tertiary center, and 26% were on-treatment. In a survey of attendees, 83% agreed that the Forum had improved families' service experience and 92% supported ...[more]

PMID: 33457629

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Project description:IntroductionAphasia is an impairment of language that occurs in 30%-40% of stroke survivors. This often chronic condition results in poor outcomes for the individual with aphasia and their family. Long-term aphasia management is limited, with few people receiving sufficient services by 6-12 months postonset. We present a protocol for the development of coproduced aphasia service elements. We will use experience-based codesign (EBCD), an approach that enables service users and providers to collaboratively develop services and care pathways. Drawing on the experiences of people with aphasia, their families and clinicians we will establish priorities for the development of new services and later work together to codesign them.Methods and analysisThis research will be coproduced with people with aphasia (n=30-60), their families (n=30-60) and speech pathologists (n=30-60) in Queensland, Australia, using EBCD. A consumer advisory committee will provide oversight and advice throughout the research. In phase 1, we will use semistructured interviews and the nominal group technique to explore experiences and unmet needs in aphasia rehabilitation. Data will be analysed using thematic analysis and the resulting themes will be prioritised in multistakeholder focus groups. Outcomes of phase 1 will inform future research (phase 2) to codesign services. Financial costs and participant experiences of EBCD will be measured.Ethics and disseminationHuman Research Ethics Committee approval for phase 1 has been obtained (HREC/2020/QRBW/61368). Results will be reported in peer-reviewed journal articles, presented at relevant conferences and, following EBCD suggested best practice, fed back to participants and community members at a celebratory event at completion of the project. The inclusion of service users in all stages of research will facilitate an integrated approach to knowledge translation. A summary of research findings will be made available to participating sites.

Project description:Purpose:Challenges experienced by staff in the Oncology Services Group at Queensland Children's Hospital led to issues with staff retention, well-being, and stress on team culture. Therefore, a customized program was developed through a needs analysis to improve the well-being and resilience of oncology staff, enabling them to cope with stressors and critical incidents inherent in their everyday work and to flourish. The program included education, on-site counselors, mindfulness sessions, debriefing, well-being resources, and improved engagement, support, and communication. Methods:Evaluation of the program in the first year examined program participation, staff feedback following education workshops and mindfulness sessions, staff retention rates, and the results of an annual organizational staff survey and a program outcome survey. Results:Approximately 76% of staff attended the Introduction to Well-being workshop, and 98% of responses to survey questions were positive. Staff also provided positive feedback on the other well-being workshops and sessions embedded within existing education programs. Employee Assistance Program counseling sessions had an 81% uptake, with a wide variety of presenting issues, 62% related to work. All participants in mindfulness sessions agreed that it was a valuable tool to improve clinical practice, 94% said it had an immediate positive impact on their well-being, and 70% agreed that they were applying mindfulness principles outside the sessions. Staff retention and turnover improved. Staff reported a positive effect on awareness of self-care, addressing risks to resilience, seeking support from trusted colleagues, coping with critical incidents, and the ability to interact positively with patients and families. Conclusion:The evaluation showed a positive impact on staff well-being. Although there was a wide variety of successful interventions reported in the literature, sustainability needs to be considered. Feedback on this program found that staff appreciated being listened to, valued, and supported through the strategies, and the ongoing program will continue to monitor staff needs and be responsive in building their resilience and well-being.

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Project description:BACKGROUND:High-quality oncology care is marked by skillful communication, yet little is known about patient and family communication perceptions or content preferences. Our study sought to elicit pediatric oncology patient and parent perceptions of early cancer communication to establish whether informational needs were met and identify opportunities for enhanced communication throughout cancer care. METHOD:An original survey instrument was developed, pretested, and administered to 129 patients, age 10-18 years, and their parents at 3 cancer centers between 2011 and 2015. Statistical analysis of survey items about perceived communication, related associations, and patient/parent concordance was performed. RESULTS:A greater percentage of participants reported "a lot" of discussion about the physical impact of cancer (patients, 58.1% [n = 75]; parents, 69.8% [n = 90]) compared with impact on quality of life (QOL) (patients, 44.2% [n = 57]; parents, 55.8% [n = 72]) or emotional impact (patients, 31.8% [n = 41]; parents, 43.4% [n = 56]). One fifth of patients (20.9% [n = 27]) reported they had no up-front discussion about the emotional impact of cancer treatment. Parents indicated a desire for increased discussion regarding impact on family life (27.9% [n = 36]), long-term QOL (27.9% [n = 36]), and daily activities (20.2% [n = 26]). Patients more frequently than parents indicated a desire for increased physician/patient discussion around the impact on daily activities (patients, 40.3% [n = 52]; parents, 21.7% [n = 28]; P < .001), long-term QOL (patients, 34.9% [n = 45]; parents, 16.3% [n = 21]; P < .001), pain management (patients, 23.3% [n = 30]; parents, 7% [n = 9]; P < .001), physical symptom management (patients, 24% [n = 31]; parents, 7.8% [n = 10]; P < .001), short-term QOL (patients, 23.3% [n = 30]; parents, 9.3% [n = 12]; P = .001), and curative potential (patients, 21.7% [n = 28]; parents, 8.5% [n = 11]; P = .002, P values calculated using McNemar's test). CONCLUSION:Oncologists may not be meeting the informational needs of many patients and some parents/caregivers. Communication could be enhanced through increased direct physician-patient communication, as well as proactive discussion of emotional symptoms and impact of cancer on QOL.

Dataset Information

The Oncology Family Forum: Collaborating With Families to Codesign Pediatric Oncology Services.

Publications

The Oncology Family Forum: Collaborating With Families to Codesign Pediatric Oncology Services.

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