Parent Narratives Provide Perspectives on the Experience of Care in Trisomy 18.

Trisomy 18 syndrome, also known as Edwards syndrome, is the second most common autosomal chromosome syndrome after Down syndrome. Trisomy 18 is a serious medical disorder due to the increased occurrence of structural defects, the high neonatal and infant mortality, and the disabilities observed in older children. Interventions, including cardiac surgery, remain controversial, and the traditional approach is to pursue pure comfort care. While the medical challenges have been well-characterized, there are scant data on the parental views and perspective of the lived experience of rearing a child with trisomy 18. Knowledge of the parental viewpoints can help clinicians guide families through decision-making. Our aim was to identify parents' perspectives by analyzing a series of narratives. In this qualitative study, we collected 46 parent narratives at the 2015 and 2016 conferences of the Support Organization for Trisomy 18 & 13 (SOFT). The participants were asked to "Tell us a story about your experience." Inductive content analysis and close reading were used to identify themes from the stories. Dedoose, a web-based application to analyze qualitative data, was used to code themes more systematically. Of the identified themes, the most common included Impact of trisomy 18 diagnosis and Surpassing expectations. Other themes included Support from professionals, A child, not a diagnosis, and Trust/lack of trust. We examined the voice and the perspectives of the parents in their challenges in caring for their children with this life-limiting condition. The exploration of the themes can ideally guide clinicians in their approach to the counseling and care of the child in a shared decision-making approach.

Need for specially designed educational support groups: Young women's experiences of being identified with BRCA pathogenic variants.

In Norway, genetic testing is permitted from the age of 16, and females identified with pathogenic variants in the BRCA1 or BRCA2 genes (BRCA PVs) can manage their cancer risk through screening programs and/or by undergoing risk-reducing surgery from the age of 25 years'. This qualitative study aimed to explore and describe how women under the age of 25 years' experience the genetic counseling and testing process for BRCA PVs and living with an increased cancer risk. Semi-structured individual interviews were conducted with five women with BRCA PVs. Thematic cross-case data analysis with systematic text condensation was used. Three main themes were identified: (1) experience with genetic counseling and testing, (2) impact of pathogenic variants on participants' future, and (3) social and psychological support needs. Women perceive genetic counseling as a source of information and care. The decision for genetic testing was made autonomously, both in line with and conflicting with the parents' wishes. Living with genetic risk adds a layer of worry and pressure regarding future decisions. Many experienced loneliness owing to a lack of contact with other young women with BRCA PVs. The results of this study indicate the need for better support after genetic testing, such as the need for educational support groups specially designed for these young women and a meeting place with their peers. Genetic counselors need to emphasize the opportunity for follow-up counseling and give assistance to choose suitable psychologists.

Operational Mechanisms of Peer Support Groups and Support for Caregivers of People Living with Serious Mental Illness.

The challenges faced by caregivers of people living with serious mental illness in Canada are well documented in the literature including emotional distress, financial strain, social isolation, and concerns about their physical health following the impact of caregiving. Peer support programs (including peer support groups) emerged as a promising method to attempt to address these challenges. While there is evidence on the positive impacts of peer support groups in providing support for caregivers, the mechanisms by which peer support groups operate and influence support for caregivers of people living with serious mental illness are less understood. This qualitative study took on a co-designed participatory research approach. Fifteen adult caregivers of people living with serious mental illness across Canada were engaged through key informant interviews that lasted for 45 - 60 min each. A thematic analysis was carried out to help understand the operational mechanisms of peer support groups in influencing support for caregivers. The key informant interviews allowed for the identification and description of the following operational mechanisms that influenced the support caregivers received from peer support groups: (1) Group dynamics; (2) Messaging/content; (3) Equity and inclusion, (4) Group philosophy; and (5) Privacy concerns. Findings from this study showed that caregivers identified a number of operational mechanisms of peer support groups that explained how they felt supported when they participated in peer support groups. Among other operational mechanisms, group dynamics in terms of the gathering of caregivers of different age brackets and varying caregiving experience negatively influenced the peer support experience of caregivers. This pointed to the need for group dynamics that consider close age ranges and similar caregiving experience during group meetings to enhance support for caregivers. Caregivers also identified a gap in equity and inclusion in peer support groups that could have otherwise enriched their experience and enhanced the support they looked to receive from the group. Practical examples to enhance equity and inclusion include promoting active listening, using inclusive language, encouraging diverse representation and asking for feedback from peer support group members. While peer support groups in Canada exist independently of one another, it may help to consolidate evidence-based recommendations in the operational mechanisms of these groups, for the benefit of caregivers who turn to these groups for support, having been left on their own by an otherwise fractured mental health system.

Community Control of Hypertension and Diabetes (CoCo-HD) program in the Indian states of Kerala and Tamil Nadu: a study protocol for a type 3 hybrid trial.

INTRODUCTION: India grapples with a formidable health challenge, with an estimated 315 million adults afflicted with hypertension and 100 million living with diabetes mellitus. Alarming statistics reveal rates for poor treatment and control of hypertension and diabetes. In response to these pressing needs, the Community Control of Hypertension and Diabetes (CoCo-HD) program aims to implement structured lifestyle interventions at scale in the southern Indian states of Kerala and Tamil Nadu. AIMS: This research is designed to evaluate the implementation outcomes of peer support programs and community mobilisation strategies in overcoming barriers and maximising enablers for effective diabetes and hypertension prevention and control. Furthermore, it will identify contextual factors that influence intervention scalability and it will also evaluate the program's value and return on investment through economic evaluation. METHODS: The CoCo-HD program is underpinned by a longstanding collaborative effort, engaging stakeholders to co-design comprehensive solutions that will be scalable in the two states. This entails equipping community health workers with tailored training and fostering community engagement, with a primary focus on leveraging peer supportat scale in these communities. The evaluation will undertake a hybrid type III trial in, Kerala and Tamil Nadu states, guided by the Institute for Health Improvement framework. The evaluation framework is underpinned by the application of three frameworks, RE-AIM, Normalisation Process Theory, and the Consolidated Framework for Implementation Research. Evaluation metrics include clinical outcomes: diabetes and hypertension control rates, as well as behavioural, physical, and biochemical measurements and treatment adherence. DISCUSSION: The anticipated outcomes of this study hold immense promise, offering important learnings into effective scaling up of lifestyle interventions for hypertension and diabetes control in low- and middle-income countries (LMICs). By identifying effective implementation strategies and contextual determinants, this research has the potential to lead to important changes in healthcare delivery systems. CONCLUSIONS: The project will provide valuable evidence for the scaling-up of structured lifestyle interventions within the healthcare systems of Kerala and Tamil Nadu, thus facilitating their future adaptation to diverse settings in India and other LMICs.

Ambivalent Speculations: Learning to Live with Barrett's Esophagus in the UK Using Facebook Support Groups.

Drawing on fieldwork in Facebook support groups, in this article I explore how people, now patients, learnt to live with Barrett's esophagus, a risk state or "precancer" for a type of esophageal cancer. This diagnosis brought the possibility of both facing and averting cancerous futures into the present. Far from passive recipients, members worked to foreground speculations of "wanted futures" in which prompt surveillance successfully prevented cancer deaths, transforming cancer risk into an opportunity for hope. Speculation here was an ambivalent and active process, involving not only the "observation of potentiality," but the opening up and foreclosing of both desirable and undesirable potentialities.

Evaluating the Effect of Participation in Bereavement Support Groups on Perceived Mental Well-Being and Grief Reactions.

The study aimed to evaluate the effect of participating in bereavement support groups on mental well-being and levels of grief and to gather information about participants´ experiences of participation. The programme consisted of six sessions over six weeks. Data were collected with the Warwick Edinburgh Mental Well-Being Scale (WEMWBS) and the Adult Attitude to Grief scale (AAG) as well as demographic and open-ended questions. 64 bereaved spouses returned at least parts of the study´s questionnaires before participating in the programme while 39 returned the complete WEMWBS and 36 the complete AAG both before and after participation. Most participants were women >60 years old. Participation in the programme resulted in a significant increase in perceived mental well-being and significantly lower levels of vulnerability in grief. Responses to open-ended questions revealed both positive and negative experiences. A lowered WEMWBS score and a relatively high AAG underscore the importance of providing services to the recently bereaved. Routine screening for complicated grief before participating in the bereavement support group sessions is recommended.

Use of Social Media Support Groups to Bolster Recruitment of Hard-to-Reach Populations.

Research within social media is becoming more prevalent in the current climate of the digital era. However, there is little known about the use of Facebook support groups to recruit hard-to-reach populations like parents of children and youth with special health care needs. This paper reports on a recruitment strategy targeted at Facebook support groups and offers practical guidance for future research based on lessons learned. Recruitment through social media provides increased flexibility and accessibility at little to no cost, but careful consideration should be given to unique ethical requirements and challenges that may arise.

Finding my tribe: a qualitative interview study of how people living with metastatic breast cancer perceive support groups.

PURPOSE: This study explored the value of metastatic breast cancer (MBC) support groups, and factors that affect attendance, from the perspective of people with MBC. METHODS: Semi-structured interviews were conducted with 28 women with MBC (support group attendees n = 16; non-attendees n = 12) between January 2022 and July 2023. Data were analysed using an inductive approach to thematic analysis. RESULTS: Three themes were generated: the value of sharing experiential knowledge, spaces for open and honest conversations, and opportunities to find connection and community. These factors were the main reasons that some participants valued, and chose to attend, an MBC support group. Stage-specificity and professional facilitation were identified as important aspects of group structure. Key reasons for non-attendance were concerns about misinformation, confronting the death of group members, and satisfaction with existing support networks. CONCLUSIONS: MBC support groups are beneficial for some people with MBC, providing opportunities to connect with others with the same diagnosis. For others, different forms of peer support such as online forums or one-on-one support may be preferred. We argue that ensuring those with MBC have equal access to the peer support they need will be essential in supporting people to live as well as possible with MBC. IMPLICATIONS FOR CANCER SURVIVORS: MBC support groups, if appropriately led, can provide emotional and informational benefits for people with MBC. This research may also have relevance to other metastatic cancers where novel therapies are extending survival, resulting in an emerging cancer population with distinct supportive and survivorship needs.

Parent experiences of the esophageal atresia journey during the early post-natal period: results from a support group perspective.

Surgically repaired esophageal atresia (EA) is associated with chronic esophageal and respiratory morbidity that require ongoing management. The care of chronically ill children can exert considerable stress on parents, thereby potentially affecting their mental well-being. In response to this, disease-specific support groups have emerged with the aim to bring together individuals facing similar challenges, facilitating the exchange of experiences within a nurturing environment, and providing essential emotional support. In the context of this international collaborative study, we investigated the role played by EA-specific support groups in promoting the emotional well-being of EA families. An anonymous online survey was distributed through a network comprising 12 international EA support groups affiliated with the Federation of Esophageal Atresia and Tracheoesophageal Fistula (EAT) during May and August of 2022. In the study, 96 parents from 23 different countries completed the survey. Fifty-six percent indicated a lack of interaction with other EA families during the initial diagnosis, with 91% expressing the belief that such contact would have been beneficial. Participants exhibited a unanimous recognition of the critical role played by disease-specific support groups in navigating the emotional journey associated with EA.Conclusion: The findings of this global survey align with existing literature, reaffirming the beneficial impact of disease-specific support groups tailored for EA patients and their families on their emotional well-being. These groups provide a valuable platform for the exchange of personal experiences and narratives, delivering advantages to both those who share their stories and those who receive this valuable information.

Red de formación y de cuidados para la transición de adolescentes con inmunodeficiencias primarias / Care and training network for the transition of adolescents with primary immunodeficiencies

En este escrito nos proponemos relatar y sistematizar los aspectos centrales de la estrategia de gestión, formación y atención diseñada por el Servicio de Inmunología y Psicología Institucional del Hospital Garrahan junto a los Hospitales Durand y Posadas para la transición de adolescentes con inmunodeficiencias primarias a la atención de adultos. La formalización de las primeras transiciones comenzó en 2007 con el Hospital Durand y progresivamente se fueron complejizando y expandiendo los procesos y actores participantes, sumándose el Hospital Posadas y otros centros de atención que reciben un porcentaje menor de pacientes. El eje central de la estrategia fue la implementación de un sistema de rotaciones para los residentes del último año de la especialidad de adultos por el servicio de pediatría. La formalización de la estrategia también readecuó de manera gradual aspectos internos de la atención de los adolescentes en el hospital pediátrico. En una etapa posterior se implementaron encuentros por videoconferencia con centros de adultos para redefinir acuerdos entre los servicios. Además, la asociación civil de pacientes (Asociación de Ayuda al Paciente con Inmunodeficiencias Primarias - AAPIDP) cumplió un rol relevante desde los primeros años de la estrategia. Estas acciones propiciaron la creación de una red de formación y cuidados en inmunodeficiencias primarias para la transición (AU)

In this article, we aim to describe and systematize the central aspects of the management, training, and care strategy designed by the Departments of Immunology and Institutional Psychology of the Garrahan Hospital, in collaboration with the Durand and Posadas Hospitals, for the transition of adolescents with primary immunodeficiencies to adult care. The first transitions were formalized in 2007 with the Durand Hospital. Over time, the processes and actors involved have become more complex and expanded, incorporating the Posadas Hospital and other care centers that receive a smaller percentage of patients. The central axis of the strategy was the implementation of a rotation system for residents in their final year of the adult specialty in the Department of Pediatrics. The formalization of the strategy also led to gradual readjustments in the internal aspects of adolescent care within the pediatric hospital. In a later stage, videoconference meetings with adult centers were implemented to redefine agreements between departments. Additionally, the patient association (Asociación de Ayuda al Paciente con Inmunodeficiencias Primarias - AAPIDP) has played a significant role since the early years of the strategy. These actions have led to the creation of a network for training and care in primary immunodeficiencies for the transition (AU)

Utilization of Face-to-Face Vestibular Support Groups: A Comparison to Online Group Participation.

OBJECTIVE: This study compared the utilization and outcomes of face-to-face (F2F) vestibular support groups and online support communities (OSC) for individuals with vestibular disorders. METHODS: We distributed a 31-question anonymous electronic survey through the Vestibular Disorders Association (VeDA) to F2F participants, categorizing user involvement in F2F, OSCs, or both and assessed impact on medical decision-making, psychosocial benefits, and goals achieved. RESULTS: The F2F cohort consisted of 97 individuals comprising primarily of non-Hispanic White women (mean age = 57 years, SD ± 14 years) with diagnoses including persistent postural-perceptual dizziness (19%), Meniere's disease (15%), and vestibular neuritis (13%). Most participants were diagnosed by an otolaryngologist (65%) and attended F2F meetings monthly or less frequently (78%). The OSC group comprised of 551 individuals, primarily of non-Hispanic White women, but was younger in age (mean age = 50 years, SD ± 13 years). OSC participants notably engaged more, with 36% participating on a daily basis and 32% multiple times a week. F2F participants were older (mean age 57 years vs 50 years, P < .001) and more commonly referred by medical professionals (22% F2F vs 6% OSC, P < .001). Both groups had similar achieved goals, including hearing from others with the same diagnosis (84% vs 89%, P > .05) and similar impact on medical decision-making (75% vs 78%, P > .05). More F2F participants reported increased development of coping skills (79% F2F vs 69% OSC, P = .037). OSC participants typically found the group via an online search (75%), compared to 51% for F2F. OSC participants had higher daily engagement (36%) compared to F2F (1%). CONCLUSION: F2F users are older and more commonly referred by medical professionals. Despite less frequent engagement, F2F participants reported similar influences on achieved goals, medical decision-making, and impact on psychosocial benefits. These findings highlight the importance of both F2F and OSC support groups for individuals with vestibular disorders.

Predictors of substance use disorder treatment and mutual support group participation among Black women across the criminal legal spectrum: A latent class approach.

BACKGROUND: The purpose of this study includes: 1) identifying classes of substance-related needs among Black women, and 2) examining the effect of substance-related need classes and culturally-relevant factors on Black women's use of substance use disorder (SUD) treatment and mutual support groups. METHODS: As part of a longitudinal cohort study, Black women were recruited in prison nearing release, on probation, and in the community without involvement in the criminal legal system (CLS, n=565) and followed-up at 18-months. We conducted a baseline latent class analysis of substance-related needs among Black women. Logistic regression models adjusted for culturally-relevant factors to predict the use of treatment and frequency of mutual support group participation over 18-months among Black women who use drugs. RESULTS: Four classes by level of needs were found: low, daily marijuana use, high mental health, and high comorbidity. During the 18-month follow-up, women characterized by the high comorbidity need class and with higher scores of religious well-being were more likely to frequently participate in mutual support groups. Non-CLS-involved women were less likely to engage with both treatment and mutual support groups than women from the prison sample at 18-months. CONCLUSIONS: This study highlights four distinct classes of substance-related needs among Black women, highlighting the complex patterns of behavior and within-racial group differences among Black women. Black women with high comorbidity needs were more likely to participate in mutual support groups, but the latent classes did not predict SUD treatment indicating other non-medical and social contextual need factors may be at play.

Atopic Dermatitis Disease Education.

There has been an influx of new educational resources for atopic dermatitis (AD) patients in recent years. The two primary organizations in the United States offering educational materials, online resources, and other forms of support include the National Eczema Association (NEA) and the American Academy of Dermatology (AAD). Educational workshops and interventions have emerged as tools that can deliver comprehensive information on AD, such as symptoms, treatments, and disease management. In regard to these workshops, studies have proven longer interventions to be more effective. Studies have also found multidisciplinary teams, including psychologists, dietitians, and AD specialists, to be more effective in AD treatment and education. Additionally, video-based education was found to be the most effective delivery medium compared to various written modes of education. Given the psychosocial impacts of AD, support groups have been found to improve life quality and decrease disease severity, with age-specific groups offering the greatest benefits. Technology such as social media and smartphones has also improved education. Social media has allowed the rapid exchange of information to wider audiences, but due to its unregulated nature, false information has also been disseminated. Despite this, web-based interventions have still been found to be satisfying, convenient, and effective in increasing treatment awareness. The advent of smartphone applications has provided patients with access to information on AD symptoms and treatment on demand. While the effectiveness of these promising applications hasn't been confirmed by studies, patient provider interactions via smartphone (teledermatology) have been found to be as effective as in-person appointments. This chapter will discuss these different types of emerging resources available to AD patients including educational materials, interventions, support groups, organizational support, and technological resources and their effectiveness.

Landscape of social networking support groups for common dermatological conditions.

Dermatological conditions are one of the most common reasons for clinical visits. Not only can they have a profound effect on patients' cosmetic appearances, but they also have a notable impact on their self-esteem, confidence, and body image, ultimately causing psychological distress. As social networking platforms become the new public space for discussion, patients have transitioned from in-person support groups to seeking online advice, support, and guidance. We conducted queries across various social networking platforms to identify and analyze active social networking support groups for common dermatological conditions. Thirty-six online support groups were identified for the top four dermatological conditions with the highest disability-adjusted life years (DALYs). We analyzed, recorded, and categorized each group according to target dermatological condition, social networking platform, support group host, engagement rate, and content of posts. In the groups identified, the majority were patient-driven (88.89%). When evaluating the engagement activity and frequency, 77.78% (n = 28) of groups had daily posts and 22.22% (n = 8) posted weekly. Additionally, we discovered a notable feature among support groups on Facebook and Reddit being more interactive and collaborative. This underscores the importance of enabling patients with dermatological conditions to generate posts and engage in open discourse, rather than absorbing single-user generated content from other popular platforms. Understanding the current landscape of social networking support groups can aid clinicians in disseminating information and resources for patients to create communities with other patients.

COPD Self-Management: A Patient-Physician Perspective.

This article is co-authored by five patients living with chronic obstructive pulmonary disease (COPD), and a primary care physician who has over 30 years of clinical experience and is involved in educating healthcare professionals. The first section of this article is authored by the patients, who describe their experiences of living with COPD. The section that follows is authored by the physician, who discusses the management of COPD in the context of the patients' experiences.

The effect of participation in support groups on retirement syndrome in older adults.

BACKGROUND: Retirement and aging are phenomena that often occur simultaneously and lead to various physical and psychological changes in older adults. Retirement syndrome consists of symptoms such as feelings of emptiness, loneliness, uselessness, lack of clear understanding of future conditions and dissatisfaction with one's performance after retirement. This phenomenon requires interventions to adapt to these changes. Considering the supportive role of nurses, the formation of support groups as an effective intervention in adapting to transitional stages is emphasized. AIMS: This study aims to investigate the effect of older adults' participation in support groups on retirement syndrome. METHODS: This Quasi-experimental study recruited a total of 80 retired older adults meeting the inclusion criteria from three Retirement Associations (Retirement centers for social security retirees are among the institutions that have been set up by the government and this organization to provide face-to-face and offline services to social security retirees, as well as providing some facilities to this segment of the society). in Iran, Research samples were randomly assigned to two intervention and control groups. The demographic questionnaire and retirement syndrome questionnaire were completed by both groups at the beginning of the study. Then, four support group sessions lasting 60 to 90 min were held twice a week for the support group, and eight weeks after the end of the intervention, the questionnaires were completed for both groups. The data were analyzed using statistical tests in SPSS version 16. The significance level was set at p < 0.05 for all tests. RESULTS: The results of the covariance analysis showed that after the intervention, the feelings of helplessness and failure (p < 0.001), feelings of older and idleness (p = 0.027), and feelings of confusion and conflict (p = 0.002) were significantly less in the support group compared to the control group. In addition, the Feeling of trying and new direction (p < 0.001) was higher after the intervention. The paired t-test results showed that in the support group, the feelings of helplessness and failure (p < 0.001), feelings of older and idleness (p = 0.004), and feelings of confusion and conflict (p < 0.001) significantly decreased after the intervention compared to before it, while the feelings of trying and new direction (p = 0.004) significantly increased. Therefore, the results showed that after the intervention, there was a statistically significant difference between the two groups in all components of the retirement syndrome. CONCLUSION: The results of this study show that participation of retired older adults in support groups can significantly improve all components of retirement syndrome, leading to an improvement in their quality of life and satisfaction.

Striving to support the supporters: A mixed methods evaluation of the strive support groups for caregivers of individuals with an eating disorder.

This mixed-methods study evaluated a peer-led support group for ED caregivers; the Eating Disorders Families Australia strive support groups. Quantitatively, 110 past or current strive attendees completed an online survey assessing their own and their care recipients' demographic profiles, strive's impact on caregiving experiences, and caregivers' psychological distress, burden, caregiving skills and self-efficacy. Qualitative assessment comprised open-ended survey questions about caregivers' strive experiences, reinforced by in-depth focus group assessment of nine participants. Quantitative analyses revealed that participants felt more confident and supported, and less isolated in their caregiving since attending strive. Caregivers displayed mid-range psychological distress and caregiver burden, and moderate caregiver skills and self-efficacy. Qualitatively, the most helpful aspects of strive were the shared experience among participants, education, and support. The most difficult elements were emotional distress and overly dominant members. Reflections discussed the necessity of caregiver support and factors impacting strive attendance. Participants recommended resuming face-to-face contact and differentiating groups based on participant characteristics (e.g. care recipients' age/stage of illness). The current findings provide support for the importance and overall positive contribution of support groups led by caregivers, such as strive.

Effectiveness of a Postpartum Breastfeeding Support Group Intervention in Promoting Exclusive Breastfeeding and Perceived Self-Efficacy: A Multicentre Randomized Clinical Trial.

There are numerous recognized benefits of breastfeeding; however, sociocultural, individual, and environmental factors influence its initiation and continuation, sometimes leading to breastfeeding rates that are lower than recommended by international guidelines. The aim of this study was to evaluate the effectiveness of a group intervention led by midwives supporting breastfeeding during the postpartum period in promoting exclusive breastfeeding, as well as to assess the impact of this intervention on perceived self-efficacy. This was a non-blind, multicentric, cluster-randomized controlled trial. Recruitment started October 2021, concluding May 2023. A total of 382 women from Andalusia (Spain) participated in the study. The results showed that at 4 months postpartum there was a higher prevalence of breastfeeding in the intervention group compared to formula feeding (p = 0.01), as well as a higher prevalence of exclusive breastfeeding (p = 0.03), and also at 6 months (p = 0.01). Perceived self-efficacy was similar in both groups for the first two months after delivery, which then remained stable until 4 months and decreased slightly at 6 months in both groups (p = 0.99). The intervention improved the average scores of perceived self-efficacy and indirectly caused higher rates of exclusive breastfeeding (p = 0.005). In conclusion, the midwife-led group intervention supporting breastfeeding proved to be effective at maintaining exclusive breastfeeding at 6 months postpartum and also at increasing perceived self-efficacy.

Racial and ethnic disparities in access to community-based perinatal mental health programs: results from a cross-sectional survey.

BACKGROUND: Perinatal mental health is a major public health problem that disproportionately affects people from racial and ethnic minority groups. Community-based perinatal mental health programs, such as peer support groups, are essential tools for the prevention and treatment of perinatal depression. Yet, little is known about racial and ethnic disparities in accessibility and utilization of community-based perinatal mental health programs. METHODS: We conducted a cross-sectional study using an online survey with program administrators representing perinatal mental health community-based services and support programs throughout New Jersey. Descriptive analysis and mapping software was used to analyze the data. RESULTS: Thirty-three program administrators completed the survey. Results showed substantial racial and ethnic disparities in availability and utilization of community-based programs. In the majority of programs, Black, Hispanic, and Asian individuals made up less than 10% of total annual participants and less than 10% of facilitators. There were also geographic disparities in program accessibility and language availability across counties. Program administrators identified mental health stigma, lack of support from family, fear of disclosure of mental health challenges, social determinants, lack of language-concordant options in programs, and limited awareness of programs in the community as significant barriers to participation of racial and ethnic minorities. Strategies to address barriers included adding language options, improving program outreach, and increasing diversity of facilitators. CONCLUSIONS: This study provides new evidence on racial and ethnic disparities in access to community-based perinatal mental health programs. Efforts to build the resources and capacities of community-based programs to identify equity gaps, increase diversity of staff, and address barriers to participation is critical to reducing racial and ethnic inequities in perinatal mental health.

Exploring the Types of Social Support Exchanged by Survivors of Pediatric Stroke and Their Families in an Online Peer Support Community: Qualitative Thematic Analysis.

BACKGROUND: Pediatric stroke is relatively rare and underresearched, and there is little awareness of its occurrence in wider society. There is a paucity of literature on the effectiveness of interventions to improve rehabilitation and the services available to survivors. Access to online health communities through the internet may be a means of support for patients with pediatric stroke and their families during recovery; however, little research has been done in this area. OBJECTIVE: This study aims to identify the types of social support provided by an online peer support group to survivors of pediatric stroke and their families. METHODS: This was a qualitative thematic analysis of posts from a pediatric stroke population on a UK online stroke community active between 2004 and 2011. The population was split into 2 groups based on whether stroke survivors were aged ≤18 years or aged >18 years at the time of posting. The posts were read by 2 authors who used the adapted Social Support Behavior Code to analyze the types of social support exchanged. RESULTS: A total of 52 participants who experienced a pediatric stroke were identified, who posted a total of 425 messages to the community. About 41 survivors were aged ≤18 years at the time of posting and were written about by others (31/35 were mothers), while 11 were aged >18 years and were writing about themselves. Survivors and their families joined together in discussion threads. Support was offered and received by all participants, regardless of age. Of all 425 posts, 193 (45.4%) contained at least 1 instance of social support. All 5 types of social support were identified: informational, emotional, network, esteem support, and tangible aid. Informational and emotional support were most commonly exchanged. Emotional support was offered more often than informational support among participants aged ≤18 years at the time of posting; this finding was reversed in the group aged >18 years. Network support and esteem support were less commonly exchanged. Notably, the access subcategory of network support was not exchanged with the community. Tangible aid was the least commonly offered type of support. The exchanged social support provided insight into rehabilitation interventions and the unmet needs of pediatric stroke survivors. CONCLUSIONS: We found evidence of engagement of childhood stroke survivors and their families in an online stroke community, with peer support being exchanged between both long- and short-term survivors of pediatric stroke. Engagement of long-term survivors of pediatric stroke through the online community was key, as they were able to offer informational support from lived experience. Further interventional research is needed to assess health and rehabilitation outcomes from engagement with online support groups. Research is also needed to ensure safe, nurturing online communities.