Peer support for adolescent girls living with scoliosis: finding a digital community

Introduction : Scoliosis in a condition where a curve develops in the spine. Adolescent girls affected by scoliosis are significantly more likely to require treatment such as bracing or surgery than their male counterparts. Curvy Girls is a peer support group for adolescent girls with scoliosis that allows them to engage with each other in a safe environment. Objectives : This study endeavours to explore the experiences of adolescent girls living with scoliosis who are Curvy Girls members and understand how this peer support group has affected their experience. Approach : Sixteen participants were recruited through a senior board member of Curvy Girls. Data was gathered through semi-structured interviews with open-ended questions, transcribed verbatim, and analyzed using an applied philosophical hermeneutic approach, a practice of uncovering insights from transformational conversation. Findings : We found that the participants’ sense of belonging to Curvy Girls did not depend on their level of involvement with the group. Whether they were leaders in their in-person local group, or simply following the organization on social media, seeing themselves represented allowed the participants to feel like they belonged to the group. Future Directions : These findings may help clinicians, healthcare professionals, and peer support organisations deepen their understanding of the perspectives of this specific population. This transformed understanding could lead to the instauration of care and services that are better adapted to this population’s needs, resulting in lessening the burden of the condition on the individual and their support system.

Parenting Experiences of Cancer Patients with Minor Children and Their Conversations About the Possibility of Death: A Cross-Sectional Web-Based Survey for an Online Cancer Community

Purpose Many cancer patients with minor children experience difficulty when talking about their illness with their children. The aim of this study is to investigate the parenting experiences of cancer patients with minor children and their conversations about the possibility of death. Methods A cross-sectional web-based survey was conducted between April and May 2019. Cancer patients with minor children were recruited from among an online peer support group called “Cancer Parents”. The participants were asked to complete a questionnaire about their experiences talking about their illness with their children. The participants were classified into those who disclosed their cancer to their children (“disclosed group”), and those who didn’t disclose (“undisclosed group”). The association between whether they talked with their children about their cancer and their conversations about the possibility of death were examined. Results A total of 370 participants were analyzed (80.8% female, median age 43.0 years). The disclosed group (n = 274, 74.1%) wanted to know what their child felt than the undisclosed group (p < 0.001). The undisclosed group didn’t want their children to see their suffering (p = 0.002) and didn’t know how to explain their disease condition ( p < 0.002). Both the disclosed (42.1%) and undisclosed (6.5%) groups told their children about the possibility of death. Conclusion This study showed the disclosed group wanted to know their children’s feelings and they tended to have a conversation about the possibility of death with their children, compared to the undisclosed group.

ALAT BANTU EDUKASI DAN INTERVENSI SEBAGAI UPAYA PERWUJUDAN INKLUSIVITAS BAGI ANAK DENGAN HIV DAMPINGAN DARI ORGANISASI SOSIAL KOMUNITAS X

Children with HIV still get discrimination and negative stigma from the community. It shows that the principle of inclusiveness in Indonesia is still hard to achieve. This condition has also become the concern of X community as a social organization that assists children with HIV. X community still faces challenges in realizing inclusiveness in society. Discrimination still exists by various parties to children with HIV due to the lack of a comprehensive understanding of HIV. Needs analysis through interviews, observations, and questionnaires to the community and X community needs to be done to see the gap that causes the principle of inclusiveness for children with HIV has not been achieved. The needs analysis was followed up with creating educational aids and implementation of interventions to provide a proper understanding of the HIV issue. Thus, discrimination by the community is reduced, and caregivers are assisted in caring for children with HIV. Educational aids are made in two forms: podcasts published through Spotify and content posted through Instagram. The intervention was carried out in the form of a sharing session conducted in conjunction with the routine X community program, namely Peer Support Group (Kelompok Dukungan Sebaya), by discussing topics considered necessary based on the needs analysis. The evaluation of psychoeducation and intervention shows that various follow-ups are still needed to achieve inclusiveness for children with HIV. Keberadaan anak dengan HIV mendapat diskriminasi dan stigma negatif dari lingkungan sosial sehingga perwujudan prinsip inklusivitas di Indonesia masih sulit tercapai. Kondisi ini turut menjadi perhatian komunitas X sebagai komunitas sosial yang mendampingi anak dengan HIV. Meskipun komunitas X menjadi wadah yang menaungi anak dengan HIV bukan berarti tidak mengalami tantangan dalam mencapai inklusivitas masyarakat. Pada kenyataannya, diskriminasi tetap ada dan dilakukan oleh berbagai pihak kepada anak dengan HIV akibat kurangnya pemahaman yang komprehensif mengenai HIV. Analisis kebutuhan melalui wawancara, observasi, maupun kuesioner terhadap masyarakat dan pihak komunitas X dilakukan untuk melihat kesenjangan yang menyebabkan prinsip inklusivitas terhadap keberadaan anak dengan HIV belum dapat dicapai. Analisis kebutuhan ditindaklanjuti dengan pembuatan alat bantu edukasi dan pelaksanaan intervensi yang bertujuan memberi pemahaman yang tepat terhadap isu HIV. Dengan demikian diskriminasi yang dilakukan masyarakat berkurang dan pelaku rawat terbantu dalam pengasuhan anak dengan HIV. Alat bantu edukasi dibuat dalam dua bentuk, yaitu podcast melalui platform Spotify dan konten-konten melalui media sosial Instagram. Intervensi dilakukan dalam bentuk sharing session yang dilakukan bersamaan dengan program rutin komunitas X yaitu Kelompok Dukungan Sebaya (KDS) dengan membahas topik-topik yang dianggap penting berdasarkan analisis kebutuhan. Evaluasi dari psikoedukasi dan intervensi yang telah dilakukan menunjukkan masih diperlukannya berbagai tindak lanjut untuk mencapai inklusivitas terhadap anak dengan HIV.

The feasibility and impact of online peer support on the well-being of higher education students

Purpose Peer support has been identified as an important protective factor for mental health and overall well-being. The purpose of this study is to examine the feasibility of implementing an online peer support group and its impact on measures of well-being. Design/methodology/approach A mixed-methods randomized controlled trial design was used to examine the feasibility and impact of online peer support. Comparisons in well-being were made between the online peer support group and an in-person peer support group and control group. Participants were randomly assigned to a control group or either a six-week in-person or online peer support group. All participants completed an online survey measuring constructs of well-being pre- and post-condition. Additionally, qualitative data regarding the benefits of peer support and in particular the efficacy of the online format were collected from participants. Analysis of variance and post hoc tests determined significant differences within and between the groups. Findings Both the online and face-to-face peer support groups scored significantly higher on post-test measures of well-being than pre-test scores and control group scores. Qualitative narratives and significant quantitative findings supported the feasibility of peer support offered online. Post-condition outcomes showed that online peer support is as effective as in-person peer support for improving well-being. Originality/value To the best of the authors’ knowledge, this study is the first of its kind to compare online and in-person peer support programs for students in higher education. The results have direct implications for higher education students and practitioners, especially at times when face-to-face support is not feasible.

The weight of the voice: gender, privilege, and qualic apperception

For transmasculine individuals who undergo testosterone therapy, a lower pitch is often one of the most desired results, both for personal affirmation as well as for how a low pitch is gendered by others. This paper explores how members from a peer support group for transmasculine individuals articulate their experiences taking testosterone. During interviews participants discussed their apperception of the acoustic changes in their voices (Zimman 2012, 2018) as well as the recognition of this change by others. In this paper, I explore how their apperceptions of their voices are organized around a cluster of related qualia of the voice (Harkness 2014, 2017) such as “heaviness”, “deepness”, “resonance”, and social “weightiness”. As their voices lower in pitch over time and they are more frequently gendered as men in social spaces, they navigate shifting positionalities of privilege, and I show how their descriptions of their voices naturalize various qualia of the voice, linking “deepness” to the social “weight”, or power, of a voice.

The feasibility and acceptability of a peer-support group for mental health in Filipino prisons

AimsTo assess the feasibility and acceptability of implementing and facilitating a peer-support group for mental health in Filipino prisons.ObjectivesTo identify the logistical issues faced in implementing and facilitating healthcare in Filipino PrisonsTo explore attitudes of potential participants towards the implementation of a peer-support group for mental health in the prisonsTo provide logical recommendations from my findings to inform future mental health support for prisoners in the PhilippinesMethodEthical approval was granted by the University of Leeds prior to data collection. In-country ethical approval was granted through my host Dr Rachael Pickering. Data collection occurred through observations and semi-structured interviews. Participants recruited included six secure-environment healthcare workers, eight prisoners and six ex-prisoners. Both prisoners and ex-prisoners were identified through gatekeepers and informed consent was gained. Interviews were transcribed before coding and themes identified.ResultFeasibility: Bureaucracy and corruption were the main barriers to the potential successful implementation of a peer-support group, which were emergent themes. Space, time and staff were all themes identified that may help facilitate the group.Attitudes: It was noted that there is a significant lack of knowledge surrounding what mental health is and its causes. Stigma and discriminatory actions were also noted by many participants as barrier to the group. However, seven prisoners and five ex-prisoners said they would join.ConclusionThe findings highlighted many barriers but with perservance and local cultural competence this peer-support group could be feasible and be accepted in Filipino prisons. It will be reducing a high unmet need for mental health services in these prisons and if ran successfully with positive effects, will be an example for other prisons across the Philippines and other low-middle income countries.

Genderdysforie en ASS

There is a growing interest in the co-occurrence of autism spectrum disorder (ASD) and gender dysphoria (GD). Research has shown that people with ASD show more gender variance than people without ASD. Due to the difficulties associated with ASD (limited social skills, problems in information processing and difficulty with change), regular GD treatment does not seem to be adequately equipped for this specific group. In this study we want to gain insight into the clinical needs of adolescents with ASD and GD and their parents. We are conducting a pilot study to the effects of a specific peer support group for adolescents with ASD and GD on quality of life. A pre-posttest design is used. Prior to the start of the support group, during each meeting and at the end of the support group, the adolescents fill out several short questionnaires. The ASD and Gender support group consists of nine monthly meetings for the adolescents, covering topics such as autism and gender-related needs, psychoeducation on medical interventions, environmental factors, gender expression and practicing gender presentation skills. Simultaneously, parents can follow the parent meetings. Currently, three rounds of the peer support group have started (each round with about 10-12 adolescents).