Peer2Me - evaluation of a peer supported program for adolescent and young adult (AYA) cancer patients: study protocol of a randomised trial using a comprehensive cohort design.

BACKGROUND: Developing cancer in young adulthood is a non-normative life event and associated with adverse physical, social and psychological consequences. High psychological distress is common in AYA cancer patients including anxiety, depression or fear of recurrence. At the same time, it is well known that AYA often report unmet needs for support, particularly in terms of informational exchange and emotional support from peers in order to benefit from shared experiences and enhance self-efficacy. Especially in the AYA group, interactions with other same-aged cancer patients may represent an essential resource in terms of coping with the disease, as family members and friends are often overwhelmed and struggling with helplessness. Currently, there is a lack of professional support services using peer support (e.g. psycho-oncological support, aftercare consultations, social legal counselling) or evaluated peer support interventions in Germany. Our aim is to assess the effectiveness of the Peer2Me intervention for AYAs, in which acute patients (mentees) are accompanied by an AYA survivor (mentor) over a period of three months. METHODS: A prospective Comprehensive Cohort Design with repeated measures will be used to evaluate the effectiveness of Peer2Me for AYA. A sample of 180 patients in active cancer treatment aged 18 to 39 years will be enrolled and randomized to the intervention or control condition (a single AYA-specific consultation). Following mentor training, mentees and mentors are matched by diagnosis, age, and gender. The primary outcome is self-efficacy; secondary outcomes include measures of anxiety, depression, health literacy, life satisfaction and social support life. Outcomes will be measured at baseline before the intervention (t1), immediately after completion of the three-month intervention (t2) and three months after completion the intervention (t3). For the final analyses, we will use an intention-to-treat approach (ITT) and compare patients in the assigned treatment groups. DISCUSSION: Peer2Me might be an important addition to existing professional psychosocial support services for young cancer patients. At the end of the study, a psycho-oncological intervention for young cancer patients undergoing acute treatment should be available, from which both mentors and mentees could benefit. The long-term continuity of Peer2Me should be ensured through collaboration with different partners. TRIAL REGISTRATION: The study was retrospectively registered on February 4, 2022 at clinicaltrials.gov (NCT05336318).

Peer support in adolescents and young adults with chronic or rare conditions in northern America and Europe: Targeted literature review.

PROBLEM: Adolescents and young adults with chronic or rare conditions face unique risks to their physical, social and emotional development. Research suggests that peer support improves their quality of life and reduces social isolation. However, there is a paucity of current information considering multiple intervention formats. ELIGIBILITY CRITERIA: A targeted literature review was conducted to identify peer support interventions and assess their feasibility, acceptability and efficacy for this population. Searches were conducted in MEDLINE, Embase and American Psychological Association PsycINFO for records reporting peer support interventions in young adults with chronic or rare conditions. Data were extracted from relevant publications and qualitatively evaluated. SAMPLE: Thirty studies were included, which assessed the use of peer support for young adults (aged 13-30 years) with chronic or rare conditions in Europe or North America. RESULTS: Peer support interventions had positive effects on social positivity, psychosocial development and medical outcomes, though significance was not always demonstrated. CONCLUSIONS: Peer support can enhance care for young adults with chronic or rare conditions. Current literature suggests that once-weekly virtual interventions are the most feasible and acceptable for patients, leading to multifaceted improvements in their well-being. IMPLICATIONS: This study is one of the first to discuss in-person, virtual and hybrid peer-based interventions for young adults with chronic and rare conditions. While all formats improved social, psychological and medical outcomes, virtual formats may be most accessible to participants. Interventions should be made available to this population, and guidelines for optimal implementation of peer support are needed.

The mediating effect of bullying on parental-peer support matching and NSSI behaviour among adolescents.

BACKGROUND: Being subjected to bullying is a significant risk factor for non-suicidal self-injury (NSSI) among adolescents. Parental support, peer support, and social connectedness play protective roles in mitigating NSSI in this population. However, the precise impact of the combined effects of parental and peer support on bullying and NSSI requires further investigation. METHODS: This study employed the Child and Adolescent Social Support Scale, Delaware Bullying Victimisation Scale, Social Connectedness Scale, and the Ottawa Self-Injury Inventory to survey 1277 Chinese adolescents. Polynomial regression analysis and response surface analysis were applied to examine the mediating role of bullying and social connectedness in the relationship between parental and peer support matching and NSSI. RESULTS: The results indicate that parental support (r = 0.287, P < 0.001), peer support (r = 0.288, P < 0.001), and social connectedness (r = 0.401, P < 0.001) were protective factors against NSSI in adolescents. Conversely, bullying (r = 0.425, P < 0.001) acts as a risk factor for NSSI in this population. Adolescents with low parental and peer support experienced more bullying than those with high parental and peer support, while those with low parental but high peer support experienced less bullying than those with high parental but low peer support (R^2 = 0.1371, P < 0.001). Social connectedness moderated the effect between bullying and NSSI in this model (ß = 0.006, P < 0.001). LIMITATIONS: Due to the under-representation of participants and lack of longitudinal data support, the explanatory power of causality between variables was limited. Future studies should include national samples and incorporate longitudinal studies to enhance the generalisability and robustness of the findings. CONCLUSION: This study reveals the influence mechanism of parental and peer support matching experienced by adolescents on bullying and NSSI and the moderating role of social connectedness. These findings enrich the developmental theory of adolescent NSSI and provide reference for the prevention and intervention of adolescent NSSI behaviour.

Identifying and synthesizing components of perinatal mental health peer support - a systematic review.

Background: Becoming a parent, while often perceived as a joyous event, can also be a vulnerable life transition, with approximately one in five mothers experiencing perinatal mental illness. Peer support is recommended for its preventive and therapeutic benefits. However, relevant program components of perinatal mental health peer support remain to be identified. Objectives: This review aims to (1) identify peer support programs in perinatal mental health through existing reviews and to (2) synthesize the components of these programs. Methods: A systematic literature review guided by PRISMA was conducted searching four databases, supplemented by hand searches. The Template for Intervention Description and Replication (TIDieR) checklist facilitated the systematic extraction and synthesis of program components. Results: Eleven peer support programs were identified from three reviews, largely conducted in English-speaking countries. The identified reviews highlight the benefits of peer support in perinatal mental health. Key components of individual programs were contextual background, materials, provider training and support, delivery modes and locations, and evaluation. Sharing lived experience and providing flexible support were central to all programs. Conclusion: Aspects of flexibility, authenticity and the challenges of program evaluation in peer support must be considered. Findings can now inform future planning and implementation efforts of peer support programs in periantal mental health.

Life after meningitis: a qualitative study exploring survivors' experience of living with sequelae.

BACKGROUND: Around twenty percent of meningitis survivors experience after-effects. However, very little research on their psychological impact has been conducted. This report details a small explorative investigation into these psychological impacts. OBJECTIVE: To explore the impact sequelae have on the meningitis survivors affected. METHODS AND MEASURES: Thematic analysis of one-hundred individual user's blog posts, self-reporting one or more sequelae after a diagnosis of meningitis. RESULTS: Blog posters' experiences varied greatly. Common trends in experience were mapped onto three themes. 'Struggling to Adjust to the New Normal' captures blog posters' struggles in returning to their lives post-hospitalization. 'Navigating Possibilities for Positivity' explores how blog posters either reported positive change due to their illness experience or felt a pressure, or inability, to do so. 'The Impact of Knowledge and Support' overarching two sub-themes; 'Lack of Awareness Causing Further Suffering' and 'Validation Leads to Narrative Shift'. These sub-themes contrast differences in experience blog posters reported, with and without knowledge, of the cause of their symptoms and support in dealing with the resulting difficulties. CONCLUSIONS: Consistent and structured after-care would benefit patients experiencing sequelae. Suggestions of a possible format this could take are put forward. In addition, self-regulatory models of illness perception help explain some variations in blog posters experiences, with possible intervention plans based on these models also suggested. However, limitations, including the comparatively small and highly selected sample, mean that further research is necessary to validate the findings and assess their validity, widespread applicability, and financial feasibility.

Confronting the inevitable: When a urologist feels like a second victim.

There are many opportunities for urologists to be emotionally impacted, and possibly injured, in the regular course of their work. In particular, urologists are vulnerable to become Second Victims as a result of errors, adverse events, and distressing clinical events. This article reviews best practices that individuals, training programs, hospitals, and healthcare systems can implement to intentionally and programmatically mitigate the short and long-term effects on healthcare professionals.

"My support groups have saved my life.": facilitators of positive or satisfactory experiences in behavioral healthcare for transgender and gender nonconforming older adults.

OBJECTIVES: Transgender and gender nonconforming (TGNC) older adults experience significant behavioral health and healthcare disparities. Facilitators that contribute to positive behavioral healthcare experiences among this population, however, remain uncertain. In this study, we investigate facilitators contributing to positive or satisfactory behavioral healthcare experiences among a sample of TGNC older adults in the United States (US). METHOD: Between September 2021 and January 2022, the first author conducted 47 semi-structured, individual interviews with TGNC adults aged 65 years or over in the US. Using an inductive grounded theory approach, we examined respondents' positive or satisfactory experiences with accessing and utilizing behavioral health services, support, and resources. Analyses were conducted using NVivo (Release 1.6) software. RESULTS: Findings underscore the importance of addressing the specific or unique needs of TGNC older patients to promote positive or satisfactory experiences in behavioral healthcare. Three themes emerged: (1) engaging with behavioral healthcare practitioners who offer compassionate, patient-centered care; (2) accessing and utilizing culturally tailored peer-support groups; and (3) receiving equitable access to gender-affirming care and social services. CONCLUSION: These findings highlight opportunities for expanding and incorporating these identified facilitators into behavioral healthcare research and practice, especially when promoting gender affirmation in care for TGNC older patients.

The impact of State of Surrender on the relationship between engagement in substance use treatment and meaning in life presence: a pilot study.

The current study examined the construct of State of Surrender (SoS)-defined as a willingness to accept, without resistance, what is to come-and investigated SoS as a statistical mediator of the relationship between engagement in substance use treatment and meaning in life (MIL). Using a cross-sectional design, participants were 123 people involved with the legal system participating in a 6-month residential treatment program for substance use. Results showed that measures of treatment engagement, including treatment participation, counselor rapport, and peer support, were all positively associated with SoS scores (R 2s ≥ 21.16). Moreover, while controlling for time spent in treatment, SoS statistically mediated the positive association between aspects of treatment engagement and MIL. State of Surrender may be a targetable process in substance use treatment that aids in recovery by orienting clients toward what they find meaningful in life. Future directions and practical considerations are discussed.

Certified Peer Support in the Field of Homelessness: Stories Behind the Work.

Certified peer support specialists (CPSS) are used as a paraprofessional workforce to engage hard-to-reach populations, including people experiencing homelessness. Thematic analysis was used to explore with CPSS (N = 7) what contributed to their effectiveness when working with this population. Participants were recruited at a HUD lead organization in the southeastern United States. Open-ended semi-structured questions were used in online, synchronous interviews. Themes related to three areas, experience, competence, and the organization, contributed to participants being effective. Specifically, interviewees observed that their lived experiences and abilities to speak a common language with clients contributed to their effectiveness. They identified how personal qualities and unique skillsets suited them for the work. Participants also valued the training they received; certification helped them to develop competencies and to balance vulnerability, empathy, and connection. Finally, participants attributed their effectiveness to clarity about their roles within the organization, supervision, attention to self-care, and co-worker support. Findings from this study may have implications for the value of lived and learned knowledge coexisting in organizations serving those who experience homelessness.

Peer Support and Beyond: The Role of Lived Experience in a New Era of Eating Disorder Treatment.

When valued and recognized for the insights gained through direct lived experience, people in eating disorder recovery and their caregivers can improve treatment outcomes. From direct care delivery-in the form of peer support-to roles in leadership, program development, and research, individuals with lived experience can positively impact patient well-being, treatment outcomes, and the field as a whole. Peer supporters can inspire hope, build connections, share diverse experiences, and disseminate clinical insight and skills through a lived experience lens. These tools and the value of expertise by experience can lead to further clinical innovation when integrated into program development, research, and leadership roles in the eating disorder field. As rates of eating disorders continue to rise, it is more important than ever to integrate the voices of lived experience to enhance and strengthen existing treatment-and help create new approaches that could transform the healing process for countless individuals.

The black box of the relationship between breast cancer patients and accompanying patients: the accompanied patients' point of view.

BACKGROUND: The PAROLE-Onco program was introduced in the province of Quebec, Canada in 2019. It integrates accompanying patients (APs), i.e., people who have been affected by cancer, into the clinical team as full members. These APs use their experiential knowledge with people undergoing treatment and with clinical teams. The aim of this paper is to evaluate, within the framework of two university medical centers, the perceptions of breast cancer patients who receive support from APs, particularly in terms of their active involvement in their care trajectory. METHODS: A qualitative study based on semi-structured interviews with accompanied patients was performed. Fourteen individual interviews were conducted between July and September 2021 with women presenting different profiles in terms of age, education, professional status, type of treatment, family situation, and clinical background. The data were analyzed using thematic analysis, focusing on patients' perceptions of APs' contributions and suggested improvements for accessing AP support. RESULTS: Three themes emerged from the semi-structured interviews: communication modalities used to connect patients with their APs, the characteristics of the support provided by APs, and the perceived effects of this support on the patients. Patients expressed a preference for telephone communication, highlighting its convenience and accessibility. The support provided by APs included emotional and informational support, neutrality, and adaptability. This relationship improved patient communication, reduced anxiety, helped regain control, and enhanced overall quality of life. The results emphasized the added value of APs in complementing the support offered by healthcare professionals. Patients noted the critical role of APs in helping them navigate the healthcare system, better understand their treatment processes, and manage their emotions. The ability of APs to provide practical advice and emotional reassurance was particularly valued. Overall, the findings underscored the significant impact of AP support on patients' experiences and highlighted areas for enhancing this service. CONCLUSION: This study highlights, during the care trajectory of people affected by breast cancer, APs' contribution to patients' emotional well-being because they improve, in particular, the management of emotions and communication with health professionals.

In 2019, we initiated the PAROLE-Onco program in Quebec, Canada, to support cancer patients by integrating Accompanying Patients (APs) into the medical team. These individuals, who have personally experienced cancer, join as full team members, sharing their insights with both patients and medical staff. Our study delved into the perceptions of breast cancer patients at two university hospitals regarding APs' involvement in their care trajectory. Through interviews with 14 women of diverse backgrounds and cancer experiences, we found that APs were instrumental in enhancing communication with doctors, facilitating the expression of challenging emotions, and aiding in treatment decisions. Patients valued the inclusion of APs in their care team and expressed gratitude for their support. Nonetheless, some encountered difficulties in reaching out to APs due to a lack of awareness or challenges involved in connecting. Overall, our research underscores the positive impact of involving APs in the care of breast cancer patients, and of enhancing emotional well-being and communication throughout the treatment journey.

The relationship between family functioning and social media addiction among university students: a moderated mediation model of depressive symptoms and peer support.

BACKGROUND: Social media addiction (SMA) is an increasing problem, especially among young adults. Little is known about university students' SMA and family functioning. This study aimed to explore the mediating effect of depressive symptoms and the moderating effect of peer support in the relationship between family functioning and SMA among young adults. METHODS: A sample of 1862 Chinese university students completed an online survey including the Bergen Social Media Addiction Scale (BSMAS), Family APGAR, the Patient Health Questionnaire (PHQ-9), peer support, and demographic characteristics. Hierarchical regression and moderated mediation analysis were used to test the effects and pathways among them. RESULTS: Of the 1840 participants, 30.11% experienced SMA, 38.80% had family dysfunction and 15.98% had depressive symptoms. Hierarchical multiple regression showed better family functioning significantly predicted less SMA (ß = -0.26, p < 0.001) and lower depressive symptoms (ß = -0.58, p < 0.001), after adjusting for covariates. Mediation analysis verified that depressive symptoms mediated the effect of family functioning on SMA (indirect effect = -0.22, 95%CI[-0.28, -0.17]). Furthermore, the interaction of family functioning and peer support was negatively related to depressive symptoms (ß= -0.03, 95% CI[-0.05, -0.01]) and the interaction of depressive symptoms and peer support was positively related to SMA (ß = 0.01, 95%CI[0.004, 0.02]). Additional analysis further confirmed that peer support decreased depressive symptoms among young adults from dysfunctional families, and increased SMA behaviors in individuals with depressive symptoms. CONCLUSION: Better family functioning and lower depressive symptoms may contribute to less social media addiction among Chinese university students. Peer support could moderate the mediating role of depressive symptoms on social media addiction in individuals with family dysfunction.

A balancing act: integrating the expertise of youth peer workers in child and adolescent mental health services.

The socio-relational focus of youth peer support workers (YPSWs) poses a challenge when YPSWs are embedded in medical oriented contexts common to child and adolescent mental health services (CAMHS); as it requires YPSWs to find a balance between being a peer on one hand, and adhering to professional boundaries and medical standards set out by CAMHS on the other. To create a suitable position for YPSWs in CAMHS, this study investigated the unique socio-relational contributions YPSWs can make to CAMHS in addition to clinicians, and identified how these contributions can be embedded within CAMHS. This study reports on 37 semi-structured interviews conducted in the Netherlands with youth (n = 10), YPSWs (n = 10), and clinicians (n = 17). Overall, the unique socio-relational contributions YPSWs can make include: their ability to build authentic trusting relationships with youth by providing empowerment, promoting autonomy, valuing stillness in recovery, reducing isolation, recognizing strengths, and navigating life inside and outside of (residential) mental healthcare and beyond classification. Moreover, prerequisites to safeguard the integration of YPSWs and these socio-relational contributions were also identified, including YPSWs achieving stability in recovery, recent lived experiences with mental health challenges, and organizational support in terms of suitable treatment climate, resources to enhance flexibility of YPSWs, and shared goals regarding youth peer support work. Overall, YPSWs view youth holistically and foster a connection with youth based on youthfulness and recent lived experience. Involving YPSWs is an important step forward to drive positive transformation in CAMHS.

Effectiveness of Peer Support Programs for Severe Mental Illness: A Systematic Review and Meta-Analysis.

(1) Background: While medication and various forms of psychotherapy are common treatments for severe mental illness, peer support programs have also proven to be effective in managing mental disorders. These programs, which involve individuals with similar experiences in navigating mental health challenges, aim to improve coping skills and foster supportive community networks. However, despite the prevalent mention of peer support programs, especially those with supervision, there has been no systematic review or meta-analysis of peer support supervision. This study aimed to systematically review and meta-analyze the forms and effectiveness of peer support programs for individuals with severe mental illnesses. (2) Methods: A literature search focusing on randomized controlled trials (RCTs) published between February 2003 and January 2024 was conducted. (3) Results: Sixteen RCTs meeting the inclusion criteria and involving a total of 4008 participants were reviewed. These studies utilized various peer support program strategies, with eight studies included in the qualitative analysis. The combined effect sizes for depressive symptoms (d = 0.12; 95% CI, -0.14, 0.37; p = 0.37), empowerment (d = 1.17; 95% CI, -0.81, 3.15; p = 0.25), quality of life (d = 0.70; 95% CI, -0.12, 1.52; p = 0.09), psychiatric symptoms (d = -0.05; 95% CI, -0.20, 0.10; p = 0.54), and self-efficacy (d = 0.20; 95% CI, 0.05, 0.36; p = 0.01) were assessed. (4) Conclusions: Our analysis emphasizes the need for further studies on peer support programs for individuals with severe mental illness, particularly those focused on self-efficacy outcomes across diverse geographic locations involving more countries and with larger scales to bolster the strength of the evidence.

The role of peer support in recovery among clients with mental illness attending the psychiatric service in a tertiary hospital in Malaysia: a qualitative study.

BACKGROUND: The understanding that mental health recovery is a personal and subjective experience informs mental health policies in many countries. However, most of the populations in these studies are from the West, limiting their applicability in Asia. Peer support in mental health refers to helping and mentoring people who have overcome similar obstacles. Despite being proven to be effective in promoting recovery, little is known about its use in Malaysian psychiatric patients. This study aims to explore the participants' perspectives on their concept of recovery and how the peer support group (PSG) aid them to achieve recovery. METHODOLOGY: This study was conducted on clients with mental illness who attended the PSG provided by the Community Psychiatry and Psychosocial Intervention Unit in National University Malaysia Medical Centre. A qualitative generic inductive approach was employed in this thematic exploratory study. Purposive sampling was the method used to collect the data for this thematic exploratory study. In-depth interviews of 11 study participants were audio recorded and transcribed verbatim. Data were analyzed using Braun and Clarke (2006) descriptive thematic analysis method. RESULTS: The findings of this study highlighted six key themes; three pertaining to the participants' perspectives on the meaning of recovery (1. Gaining self-reliance and social inclusion, 2. Personal growth and improved life circumstances in recovery, and 3. Symptoms improvement) and another three pertaining to how the peer support group aids recovery (1. Empowerment and growth through peer support, 2. Promoting well-being, 3. Social connection and support). CONCLUSION: The findings of this study provide valuable insights into the perspectives of psychiatry clinic patients enrolled in PSG on the concept of recovery and the role of such groups in their recovery journey. The findings demonstrated that the PSG complemented the participants' perspectives on recovery, reinforcing the notion that a comprehensive and person-centered approach to mental health services is essential for successful and sustained recovery outcomes.

Community Mental Health Workers: Their Workplaces, Roles, and Impact.

Mental health care in the U.S. is at a critical crisis, compounded with a severe shortage of providers. The cost burden is immense, with severe disparity seen in traditionally marginalized communities and rural populations. Community health workers have been used to increase access to physical health care in the U.S. for over seventy years-and have been used abroad for centuries. Their use in mental health care is more recent and can increase access, but raises policy, reimbursement, triage, and scopes-of-practice considerations. They are especially beneficial for many at-risk populations including communities of color, those with serious mental illness, rural communities, the elderly, and youth. This literature review searched PubMed, EMBASE, and Google Scholar and provides a broad review of the different types of community mental health workers (community health workers/promotores de salud, peer support, peer navigators, and lay counselors), how they increase access to care, skill sets, practice locations, and uses for specific at-risk populations. Increasing and expanding the use of community mental health workers expands much needed mental health care to those at risk by task-shifting the burden on the traditional professional workforce, offering a solution to both the workforce shortage and the lack of equity in mental health care.

Enriching the lives of children with acquired brain injury and their caregivers: experiences from peer mentorship sports camps.

Peer-based community interventions have shown promise in improving health management and fostering coping skills and psychosocial functioning among individuals with a disability. Active Rehabilitation camps are examples of peer-based community interventions that provide structured, time-limited peer mentorship in conjunction with sports and leisure activities. These camps hold potential benefits for individuals with acquired neurological injury. However, the specific impact of Active Rehabilitation camps on children or individuals with acquired brain injury remains unexplored. In this longitudinal, qualitative study, we explored children with an acquired brain injury and their caregivers' experiences with an Active Rehabilitation camp in Norway through observations and interviews with nine children and ten caregivers. Using an abductive thematic analysis, we identified an overarching theme: Active Rehabilitation peer mentorship camps enrich the lives of children with acquired brain injury and their caregivers. The theme contains three sub-themes: (1) Interacting with peers made me wiser, (2) Nudging from peer mentors made me feel better, and (3) A sense of companionship through meeting peers. Peer mentorship, sports and leisure activities, and the safe camp atmosphere benefitted children with acquired brain injury and their caregivers. The children gained knowledge, motivation, and self-worth, and their caregivers had greater impetus to prioritize their children's independence. Meeting peers and peer mentors led to friendships and sustained social connections. The Self-Determination Theory was of assistance in explaining the informants' experiences. Active Rehabilitation camps provide children with acquired brain injury and their caregivers with an opportunity to develop better coping skills, improve psychological functioning, and build more robust social networks.

English language learning anxiety and academic burnout in Chinese freshmen: a chain mediating approach.

Background: The university stage is critical for cultivating and enhancing students' practical English proficiency, encompassing listening, speaking, reading, writing, and translation skills. Losing interest in English studies at this stage not only hampers the development of practical English competence but also has a negative impact on future employment and personal growth. Aims: This study aimed to explore to how English language learning anxiety (ELLA) affects academic burnout (AB) of freshman in China and explores the role of academic peer support (APS) and academic self-efficacy (ASE) in the relationship between the two. Methods: The study involved 1,355 college students who completed English Language Learning Anxiety Scale, the English Academic burnout Scale, Academic Peer Relationship Scale, the Academic Self-efficacy Scale. Results: AB was significantly impacted by ELLA. ELLA and AB were mediated by ASE. Another factor that acted as a mediator between ELLA and AB was APS. ELLA and AB were mediated by a chain reaction involving ASE and APS. Conclusion: The chain mediation model validated in this study, providing valuable insights into the effects of freshmen's ELLA on AB in China, as well as practical insights into the prevention and intervention of ELLA and AB in other current college students.

Zoom & WhatsApp Digital Information and Communication Technologies (ICTs) Enhance Community Engaged Research with Women Immigrants from Mexico.

This article demonstrates how digital information and communication technologies (ICTs) (Zoom/WhatsApp) unexpectedly and counterintuitively proved to be valuable tools for community-engaged health research when, in the context of the COVID-19 pandemic, they were integrated into a research study testing a peer support group intervention with female immigrants from Mexico. Because of pandemic restrictions, we changed the study protocol to hold meetings remotely via Zoom rather than in person as originally planned. Because we recognized that this would lack some opportunities for participants to interact and develop relationships, we created a WhatsApp chat for each group. Despite challenges for participants to use ICTs and participant-stated preference for in-person meetings, the results demonstrated that participants overwhelmingly endorsed these technologies as promoting access, participation, engagement, and satisfaction. Zoom/WhatsApp created a valuable environment both as a method for conducting research with this population, but also as part of the intervention for immigrant women to support and learn from each other. ICT adaptations have now permanently changed the way we conduct community-engaged health research.

Perceptions and Utilization of Online Peer Support Among Informal Dementia Caregivers: Survey Study.

Background: Informal dementia caregivers are those who care for a person living with dementia and do not receive payment (eg, family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but this research is limited, focusing merely on caregivers who are already online community users. Objective: We aimed to investigate the perceptions and utilization of online peer support through a survey. Methods: Following the Andersen and Newman Framework of Health Services Utilization and using REDCap (Research Electronic Data Capture), we designed and administered a survey to investigate the perceptions and utilization of online peer support among informal dementia caregivers. Specifically, we collected types of information that influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refer to the sociocultural characteristics of caregivers, relationships between caregivers and people living with dementia, and belief in the value of online peer support; enabling factors, which refer to the logistic aspects of accessing online peer support (eg, eHealth literacy and access to high-speed internet); and need factors, which are the most immediate causes of seeking online peer support. We also collected data on caregivers' experiences with accessing online communities. We distributed the survey link on November 14, 2022, within two online locations: the Alzheimer's Association website (as an advertisement) and ALZConnected (an online community organized by the Alzheimer's Association). We collected all responses on February 23, 2023, and conducted a regression analysis to identifyn factors that were associated with accessing online peer support. Results: We collected responses from 172 dementia caregivers. Of these participants, 140 (81.4%) completed the entire survey. These caregivers were aged 19 to 87 (mean 54, SD 13.5) years, and a majority were female (123/140, 87.9%) and White (126/140, 90%). Our findings show that the behavior of accessing any online community was significantly associated with participants' belief in the value of online peer support (P=.006). Moreover, of the 40 non-online community caregivers, 33 (83%) had a belief score above 24-the score that was assigned when a neutral option was selected for each belief question. The most common reasons for not accessing any online community were having no time to do so (14/140, 10%) and having insufficient online information-searching skills (9/140, 6.4%). Conclusions: Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or online information-searching skills.