Using the Double Diamond model to co-design a dementia caregivers telehealth peer support program

We aimed to develop a telehealth peer support program for isolated dementia caregivers. This paper reports the co-design process by telehealth and the impact and experiences of participants. The Double Diamond model guided the co-design process, which has four phases, with participants reflecting on their caregiving experiences. Group meetings were recorded, notes compiled with inductive thematic analysis undertaken for phases one to three. Each phase findings were presented to the group for verification and refinement. Semi-structured interviews with participants were completed at the end of the project. Six dementia caregivers were recruited from dispersed locations with diverse characteristics. The process identified eight key topics to be included in a program to be delivered by telehealth. Participants reported the technology did not detract from the co-design and at times aided it, despite some technical problems. All reported high levels of group connectedness, feeling supported and transfer of knowledge and skills. One participant would have liked more understanding of the process. The group continued to meet without professional input for 2.5 years following the completion of the project. Telehealth can be a mechanism to support diverse populations in participating in co-design projects.

Examining social media peer support and improving psychosocial outcomes for young women with breast cancer.

162 Background: Young women with breast cancer (YWBC) have unique survivorship needs due to life stage at point of diagnosis. Peer support sought by YWBC through social media channels appears to be rising. We aimed to understand the unmet needs of YWBC in order to develop a tailored peer support program to improve young women’s breast cancer experience and ultimately reduce psychosocial morbidity long-term. Methods: Using qualitative inquiry, we conducted semi-structured interviews with YWBC survivors and clinicians using purposive sampling. Inclusion criteria were women aged 40 years or younger at diagnosis, stage 0-IV disease. Survivors were minimum one year post-diagnosis and with active treatment complete. Interviews were recorded and transcribed verbatim and data was analyzed using Thorne’s Interpretive Description. Themes were reviewed with study team throughout data analysis. Results: Thirty-six participants were interviewed from ten centers across seven Canadian provinces; mean age 36 years. Participant reported demographics:18% ‘visible minority’, 9% ‘born outside Canada’, 7% ‘Indigenous’ and 54% of patients’ household income at or below Canadian average. At point of diagnosis 69% married, 44% had children and 9% pregnant or postpartum. Themes from YWBC interviewed focused on coping needs: feeling alone, misunderstood by professionals and misplaced among peers. Participants described all-age peer support groups risked triggering anxieties, lacked convenience and were comprised of women at later life stages with differing needs. YWBC reported lack of young age breast cancer-specific peer support. YWBC frequently found support through social media de novo, by following young-age breast cancer survivor pages, blogs and forums as well as virtual support groups. YWBC also report benefit from identifying similar life and cancer stage survivors globally and forming individual relations virtually, through direct messaging. Additionally, benefits described from age-specific social media support included unique shared experience and understanding, hope from positive outcomes of similar life stage diagnoses, and increased confidence and healthcare navigation for YWBC. Women unanimously requested one on one peer support program development - a survivor mentorship scheme specifically for YWBC that would provide the convenience of online support without the obligations or emotionally overwhelming nature of structured support groups. Conclusions: We have identified unique support needs from this young cohort of women that are not currently being met within standard Canadian healthcare pathways. We aim to develop a novel one on one peer support program for YWBC, to optimize psychosocial support and improve young women’s empowerment and autonomy in managing the effects of cancer long-term.

A Pilot Feasibility Randomized Controlled Trial on the Ontario Brain Injury Association Peer Support Program

Background: The long-term consequences of traumatic brain injury can create major barriers to community integration. Peer support represents a sustainable model of support across this transition. The objective of the current study was to determine the feasibility of conducting a randomized controlled trial on the Ontario Brain Injury Association Peer Support Program and the preliminary effectiveness of the program on community integration, mood, health-related quality of life, and self-efficacy; Methods: A pilot feasibility randomized controlled trial with an embedded qualitative component was conducted. Mentees with moderate-to-severe traumatic brain injury (n = 13) were randomized to a weekly intervention or waitlist control group. Interviews were conducted with a subset of mentees and peer mentors (n = 10). Integration of the quantitative and qualitative data was completed using a joint display approach; Results: No statistically significant results were found for community integration, mood, or self-efficacy; however, changes in these outcomes were accompanied by moderate-to-large effect sizes. Within health-related quality of life, the mean pain score of the intervention group was significantly lower than that of the control group at the two-month timepoint but not at completion. Interviews revealed proximal improvements in knowledge, skills, and goals, and identified two domains related to trial acceptability: (1) environmental context and resources, and (2) reinforcement; Conclusions: Given the conceivable importance of proximal improvements in domains such as knowledge, skills, and/or goals for the attainment of more distal outcomes, modifications to the existing Peer Support Program may be warranted. The introduction of program recommendations which promote discussion around particular domains may help facilitate long-term improvements in health outcomes.