Caregiver Support Groups Research Articles

A First-Person Account of Caring for a Parent With Dysphagia.

Research has shown that caregiver burden is compounded by dysphagia experienced by the care recipient. However, little is known about the caregiver perception of the caregiving experience, highlighting both the positive and negative experiences. As such, the purpose of this clinical focus article was to provide a first-person account of an adult caregiver of an aging parent with dysphagia and relate their experiences to current literature to inform clinical practice. The caregiver provided a detailed account of her experiences caring for her father with dysphagia. Her account was analyzed to identify recurring themes in the literature regarding the caregiving experience and to identify gaps in dysphagia-related caregiver support. The caregiver's story is organized into seven main sections: (a) life before dysphagia, (b) dysphagia onset and diagnosis, (c) dysphagia management and support, (d) community support, (e) impact on family relationships, (f) social and emotional health, and (g) current perspectives on the caregiving experience. The challenges associated with caregiving clearly impact the caregiver's overall well-being, but she received abundant support from her family, community-based speech-language pathologist, and caregiver support groups. The caregiver's experiences, while not applicable to every caregiver caring for a loved one with dysphagia, can offer valuable insights to clinicians and other caregivers facing similar situations.

Co-Designing Caregiver Support Groups: Rapid Review with a Non-Profit Organization

ABSTRACT This rapid review aims to synthesize literature on co-designing support groups for caregivers of older adults, focusing on how caregivers are involved in the co-design process. This synthesis is undertaken in collaboration with the Saskatoon Council on Aging to inform the development of caregiver support groups. Guided by the Cochrane Rapid Reviews Methods Group, this review follows a streamlined evidence synthesis approach. Our search strategy was run on June 5, 2023, on the MEDLINE, EMBASE, CINAHL, Cochrane CENTRAL, and PsycINFO databases. Three studies met the inclusion criteria, highlighting the importance of comprehensive initiatives and peer support. Key findings include the necessity of tailoring support groups to caregivers’ specific needs and preferences, the combination of online and offline support, and the importance of cultural sensitivity in service design. Methodological approaches to co-design varied across studies, with each emphasizing the importance of iterative feedback loops and engagement with diverse caregiver groups. The review underscores the value of co-designed support groups in effectively meeting caregivers’ needs. Engaging caregivers in the design process ensures that support groups are tailored to their requirements and empowers them to shape their support systems. The insights from this review can guide future co-design efforts, enhancing caregiver support initiatives.

An Analysis of Online Peer Support Groups for Informal Caregivers of Patients with Parkinson’s Disease

An Analysis of Online Peer Support Groups for Informal Caregivers of Patients with Parkinson’s Disease

2218 Experience of family caregivers for older patients with delirium: a qualitative study

Abstract Background Delirium is associated with psychological and cognitive complications that have impacts beyond the patients. Although family members and carers can play a significant role in the management and recognition of delirium, there is limited research on the experience of family caregivers in the context of delirium. This study aims to explore the needs and experiences of family caregivers for a person with delirium and offer suggestions to support them. Method A qualitative interview study with family caregivers of persons with delirium. Data were analysed using an abductive analysis approach. Results Fourteen family caregivers were interviewed. Carers explained their feeling of responsibility to support their loved ones with delirium, however, they perceived their caregiving role negatively because of increasing demands and the lack of sufficient support. Carers attributed their emotional exhaustion and distress to the onset of delirium, change in the personality of the person with delirium, confusion and progression of delirium. Additionally, carers indicated the negative impact of caregiving on the quality of the relationship between them and person with delirium. This highlights the need to enhance the support provided to carers to mitigate the emotional and relationship impact of caregiving on the carer. We identified the needs of carers for people with delirium including: education on delirium, reassurance, information on care pathways and support from formal carers to take breaks. Conclusions Viable solutions to assist family caregivers include more support for the carer in formulating care plans for people with delirium, the development of support groups for family caregivers of people with delirium, and a case worker. These solutions may help to decrease re-hospitalisation and admission to care homes. Future research should focus on approaches to better support carers of people with delirium, and to shift the care plan from person-centred into person and family-centred approach.

Hope Groups: a protocol for a cluster randomized controlled trial of psychosocial, mental health, and parenting support groups for Ukrainian caregivers during war and conflict

BackgroundIn 2021, more than two-thirds of the world’s children lived in a conflict-affected country. In 2022, 13 million Ukrainians were forced to flee their homes after Russia’s full-scale invasion. Hope Groups are a 12-session psychosocial, mental health, and parenting support intervention designed to strengthen parents, caregivers, and children affected by war and crisis. The primary objective of this study is to evaluate the effectiveness of Hope Groups among Ukrainians affected by war, compared to a wait-list control group. This protocol describes a promising decentralized intervention delivery model and an innovative research design, which estimates the causal effect of Hope Groups while prioritizing prompt delivery of beneficial services to war-affected participants.MethodsThis protocol describes a pragmatic cluster randomized controlled trial (RCT) among Ukrainians externally displaced, internally displaced within Ukraine, and living at home in war-affected areas. This study consists of 90 clusters with 4–7 participants per cluster, totaling approximately n = 450 participants. Intervention clusters will receive 12-session Hope Groups led by peer facilitators, and control clusters will be wait-listed to receive the intervention after the RCT concludes. Clusters will be matched on the facilitator performing recruitment and intervention delivery. Primary outcomes are caregiver mental health, violence against children, and positive parenting practices. Secondary outcomes include prevention of violence against women and caregiver and child well-being. Outcomes will be based on caregiver report and collected at baseline and endline (1-week post-intervention). Follow-up data will be collected among the intervention group at 6–8 weeks post-intervention, with aims for quasi-experimental follow-ups after 6 and 12 months, pending war circumstances and funding. Analyses will utilize matching techniques, Bayesian interim analyses, and multi-level modeling to estimate the causal effect of Hope Groups in comparison to wait-list controls.DiscussionThis study is the first known randomized trial of a psychosocial, mental health, and parenting intervention among Ukrainians affected by war. If results demonstrate effectiveness, Hope Groups hold the potential to be adapted and scaled to other populations affected by war and crisis worldwide. Additionally, methodologies described in this protocol could be utilized in crisis-setting research to simultaneously prioritize the estimation of causal effects and prompt delivery of beneficial interventions to crisis-affected populations.Trial registrationThis trial was registered on Open Science Framework on November 9, 2023. Registration: OSF.IO/UVJ67.

Exemple d’une équipe territoriale de niveau 3 (« recours ») dans le TDAH : l’Équipe de Coordination Lyonnaise des troubles de l’Attention et de l’Hyperactivité (ECLAH)

BackgroundAttention Deficit Hyperactivity Disorder (ADHD) affects 6% of children and 3% of adults, representing approximately 481,600 youths and 240,800 adults in the Auvergne-Rhône-Alpes region. Despite its prevalence, the French national strategy for neurodevelopmental disorders (2023–2027) highlights the lack of dedicated healthcare pathways for ADHD and the challenges in accessing diagnosis, treatment, and psychosocial rehabilitation. In Auvergne-Rhône-Alpes, the discordance between the significant public health issue posed by ADHD and the local healthcare resources has often led to misdirection and congestion of specialized hospital teams. This situation persists despite the well-documented medical and societal complications of untreated ADHD. At the Vinatier Hospital in Lyon, several specialized teams offer expertise in ADHD for children and adults, but there was no specific team dedicated to ADHD until recently. The Lyon ADHD Coordination Team (ECLAH)Formed in November 2023 at the initiative of professionals from the Vinatier Hospital, ECLAH is a multidisciplinary team comprising psychologists, neuropsychologists, psychiatrists, child psychiatrists, addiction specialists, pharmacists, project managers, and clinical research associates. ECLAH aims to meet the national strategy's requirements for ADHD in the Auvergne-Rhône-Alpes region by coordinating care networks, providing information, training, care, and conducting research in the field of ADHD. ECLAH functions as a resource team, complementing existing structures without replacing them, and focuses on specialization and expertise in ADHD to enhance ongoing efforts. Training MissionThe team contributes to the “Inter-University Diploma in ADHD across all ages” (DIU). The training “ADHD: From Screening to Support” equips healthcare professionals with the knowledge and tools necessary for ADHD diagnosis and treatment. The “DIVA Adult 5.0: Diagnostic Goal!” training focuses on diagnostic reasoning and interviewing techniques for ADHD evaluation. These programs adhere to current scientific data and ADHD guidelines from recognized scientific societies, with a Qualiopi® certification pending for continuous medical education validation. Following training, professionals receive implementation support through multidisciplinary guidance meetings. Coordination and Information MissionECLAH is organizing a care network for ADHD in Auvergne-Rhône-Alpes, collaborating with general practitioners, health and educational institutions, medico-social establishments, penitentiary care, expert centers, and patient associations. The team provides information and guidance to institutions and professionals seeking ADHD-related resources either directly or through its developing website. The team maintains adherence to scientific data and best practice recommendations (RBPP) in the region, fostering expertise through awareness, training, tele-expertise, and multidisciplinary concertation meetings. ECLAH also coordinates with national ADHD organizations, contributing to the harmonization of practices and the development of ADHD guidelines. Care MissionECLAH offers third-line or “recourse” consultations for children and adults with complex cases requiring diagnostic or therapeutic support. These consultations, often involving differential diagnoses and comorbidity assessments, are conducted in partnership with specialized units such as the Center for the Evaluation of Language, Learning, and Attention Disorders (CETESLA) for child psychiatry and the University Addiction Service of Lyon (SUAL) for adults. ECLAH also provides psychoeducation and therapeutic education groups for individuals with complex ADHD or contraindications to medication. A support group for caregivers is planned, leveraging the “BREF” psychoeducation program. Research MissionECLAH engages in medical research, focusing on ADHD characteristics in women by hormonal status, the cessation of methylphenidate treatment in adolescents, links between asthma and ADHD, and screening for ADHD in high-level young athletes. ConclusionECLAH is a third-level territorial team supporting professionals and their ADHD patients in Auvergne-Rhône-Alpes. By coordinating the regional care network, ECLAH enhances the existing care structures, ensuring access to reliable ADHD information and treatment pathways. The team plans to introduce a psychoeducation group for families and prioritize ADHD detection in penitentiary settings for both adults and youths.

Benefits of being part of a support group for caregivers of children with multiple disabilities: a qualitative study.

Motivation for the study. Filling a knowledge gap regarding support groups for caregivers of children with multiple disabilities. Main findings. Support groups are valuable spaces for social support and learning for caregivers of children with multiple disabilities. They facilitate resilience and coping strategies following the birth of a child with multiple disabilities. They promote the participation and empowerment of caregivers of children with multiple disabilities to address access barriers and advocate for the fundamental rights of children. Implications. It is important to promote and support support groups for caregivers of children with multiple disabilities. To explore the perceived benefits of participating in a support group of caregivers of children with multiple disabilities. A qualitative study with a focused ethnographic approach was conducted from October 2022 to February 2023, in which we applied convenience sampling. We included 20 caregivers of children with multiple disabilities. Information was collected through participant observation, focus groups, and semi-structured interviews. Thematic analysis was performed by applying Braun and Clark's proposals. The emerging themes were: social support network: integrating, informing, and helping each other; learning space: learning to take care and to take care of oneself; promoting empowerment: identifying and facing access barriers. We found that the support group functions as a social support network provides information, reduces uncertainty, and facilitates coping and resilience after the birth and upbringing of a child with multiple disabilities. It is a space where one learns to care for and take care of oneself and where empowerment for the defense of the rights of children with disabilities is promoted.

Peer Support for Caregivers of People Living with Posterior Cortical Atrophy in Melbourne, Australia: A Feasibility Study.

Posterior Cortical Atrophy (PCA) is a rare form of young-onset dementia that causes early visuospatial and visuoperceptual deficits. The symptom profile of Posterior Cortical Atrophy leads to very specific care needs for those affected, who often rely on informal caregivers (including friends and family). Rare dementia support groups can be useful for both patients and their caregivers to assist with knowledge sharing, psychoeducation, and the provision of psychosocial support. Despite this, few such support groups exist. The purpose of this study was to examine a PCA support group for caregivers of individuals living with PCA. We held a structured psychoeducation support group comprised of four sessions with the aim being to provide education, strategies for the management of the disease, and peer support. Caregivers' mental health and quality of life were assessed. The results of our study showed that support group participation was a positive experience and assisted with increasing the knowledge of caregivers and fostering social connections. We suggest that peer support groups may be beneficial for both people living with PCA and their caregivers. We recommend that future quantitative and qualitative research is conducted to further assess health-promotion benefits to people living with PCA and their caregivers, and to assess their development and implementation in different contexts.

The Olera.care Digital Caregiving Assistance Platform for Dementia Caregivers: Preliminary Evaluation Study.

The increasing prevalence of Alzheimer disease and Alzheimer disease-related dementia in the United States has amplified the health care burden and caregiving challenges, especially for caregivers of people living with dementia. A web-based care planning tool, Olera.care, was developed to aid caregivers in managing common challenges associated with dementia care. This study aims to preliminarily evaluate the quality and usability of the Olera.care platform and assess the preferences of using the technology and interests in learning about different older adult care services among caregivers. For interview 1, we aim to understand caregiving needs and let the participants start engaging with the platform. After they engage with the platform, we schedule the second interview and let the participants complete the Mobile Application Rating Scale. The survey also included sociodemographic characteristics, caregiving experiences, communication preferences in technology adoption, and older adult care service use and interests. Descriptive statistics were used to describe the quality and usability of the platform and characteristics of the participants. We conducted 2-sample 2-tailed t tests to examine the differences in the Mobile Application Rating Scale evaluation scores by caregiver characteristics. Overall, 30 adult caregivers in Texas completed the evaluation. The majority were aged ≥50 years (25/30, 83%), women (23/30, 77%), White (25/30, 83%), and financially stable (20/30, 67%). The Olera.care platform evaluation showed high satisfaction, with an overall mean rating of 4.57 (SD 0.57) of 5, and scored well in engagement (mean 4.10, SD 0.61), functionality (mean 4.46, SD 0.44), aesthetics (mean 4.58, SD 0.53), and information quality (mean 4.76, SD 0.44) consistently across all participants. A statistically significant difference (P=.02) was observed in functionality evaluation scores by duration of caregiving, with caregivers dedicating more hours to care rating it higher than those providing less care (mean 4.6, SD 0.4 vs mean 4.2, SD 0.5). In addition, caregivers with less caregiving experience reported significantly higher evaluation scores for aesthetics (P=.04) and information quality (P=.03) compared to those with longer years of caregiving. All participants expressed a willingness to recommend the app to others, and 90% (27/30) rated the app overall positively. Most of the participants (21/30, 70%) favored anonymous interactions before receiving personalized feedback and preferred computer browsers over mobile apps. Medical home health services were the most used, with a diverse range of services being used. Caregiver support groups, medical providers, memory care, meal services, and adult day care were among the most desired services for future exploration. The Olera.care web-based platform is a practical, engaging, easy-to-use, visually appealing, and informative tool for dementia caregivers. Future development and research are essential to enhance the platform and comprehensively evaluate it among a broader population.

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.

Family dementia caregivers with suicidal ideation improve with mentalizing imagery therapy: Results from a pilot study

BackgroundFamily caregivers of persons living with dementia often experience increased depression and suicidal ideation (SI). However, the feasibility and impact of therapies on caregiver SI has remained largely unexplored. Mentalizing imagery therapy (MIT) helps reduce psychological symptoms through mindfulness and guided imagery. This pilot study examined the feasibility of participation by caregivers with SI in a randomized controlled trial (RCT) of MIT versus a psychosocial support group (SG), and the respective impact of group on SI, depression, and secondary outcomes. MethodsA secondary analysis of data from an RCT of 4-week MIT or SG for caregivers (n = 46) was performed, identifying SI (n = 23) and non-SI (n = 23) cohorts. Group attendance and home practice were compared between cohorts. In the SI cohort (total n = 23, MIT n = 11, SG n = 12), group differences in SI, depression, and secondary outcomes were evaluated post-group and at 4-month follow-up. ResultsAttendance in both groups and home practice in MIT were similar between SI and non-SI cohorts. In the SI cohort, MIT evinced greater improvements relative to SG in SI (p=.02) and depression (p=.02) post-group, and other secondary outcomes at follow-up. LimitationsLimitations include small sample size and single-item assessments of SI from validated depression rating scales. ConclusionsParticipation in an RCT was feasible for caregivers with SI. MIT resulted in important benefits for SI and depression, while SG showed no acute SI benefit. The role of MIT in improving SI should be confirmed with adequately powered trials, as effective therapies to address caregiver SI are critical.

Unmet Sexual Health Resource Needs and Preferences for Interventions to Address These Needs Among Female Partners of Patients With Prostate Cancer

ObjectivesTo characterize unmet sexual health resource needs and preferences for interventions to address unmet needs among female partners of patients with prostate cancer (PCa), given the significant negative impact of PCa on the sexual health of partners. MethodsWe conducted an exploratory sequential mixed methods study of female partners recruited from multiple U.S. clinical locations, websites, and support groups for caregivers. We first conducted semi-structured in-depth interviews. Qualitative results informed development of a cross-sectional survey, which was administered to a larger sample of partners. ResultsOverall, 12 and 200 female partners participated in the qualitative and quantitative portions of the study. Major emergent themes from interviews were the benefits and drawbacks of technology-based interventions, the importance of sexual health resources throughout the PCa journey, and a desire for sexual health support groups that include partners. In the survey, the most common sexual health topics that partners wanted more information about were male libido problems (30.0%), erectile dysfunction (26.5%), and female libido and arousal problems (24.5%). Additionally, 41.5% wanted more information about sexual health websites, 35.0% about partners-only support groups, 29.5% about support groups for couples, and 23.5% about sexual medicine specialists. ConclusionsTo our knowledge, this is the largest study to date on female partners’ unmet sexual health resource needs and preferences for sexual health interventions. Partners prefer technology-based interventions, desire sexual health-focused support groups, and want more information about a variety of sexual issues and specialists who treat them.

THE POTENTIAL OF CROWDSOURCED ASSET MAPPING TECHNOLOGIES FOR SUPPORTING DEMENTIA CAREGIVERS

Abstract It is well-established that caregivers of people living with dementia (PLWD) often report having difficulty finding information about education and support that is available to them in their community. Caregiver support groups have demonstrated to be an effective approach to caregiver education through mutual support, though many caregivers are unable to participate in caregiver support groups due to time and geographic constraints. Crowdsourced technologies that rely on volunteered geographic information (VGI) are a viable way of community members to provide mutual support on a variety of issues, including disaster response, traffic conditions, health, and travel. These technologies often rely on a mobile app where users upload VGI that are of interest to others who use the app. There are benefits and drawbacks of crowdsourced technologies. For example, they may be an easy way for community members to share needed information, though there may be challenges in the quality of data that users provide. This presentation will report findings from a project that examined dementia caregivers’ interest in using crowdsourced mapping technologies to share information about services and resources in their community that they have found helpful. Data were collected from a diverse sample of dementia caregivers living in Alabama through an online survey that was administered between June and November of 2022. Overall, it was found that caregivers were interested in using a crowdsourcing technology for support and education. Additional findings provide guidance for developing a crowdsourcing protocol that is based on caregivers’ reported information needs.

THE USE OF CAREGIVER SUPPORT SERVICES AND CAREGIVING IMPACT AMONG DIVERSE CAREGIVERS OF OLDER ADULTS WITH DEMENTIA

Abstract Caregiver support services may improve experiences among caregivers of people with dementia, but racial/ethnic disparities exist in service use. Using data from the 2021 National Study of Caregiving, we measured caregiver service use and caregiving impacts among 470 Black (n=187), Hispanic (n=37), and White (n=246) caregivers of older adults with possible/probable dementia from the National Health and Aging Trends Study. We classified caregivers as using at least one or none of the following services in the past year: caregiver support group, training, or respite care. We calculated the weighted proportion of caregivers reporting caregiver burden (at least one: physical, emotional or financial difficulty), exhaustion, and feeling overwhelmed within each racial/ethnic group. Caregiver service use varied by race/ethnicity (47% of Hispanic, 29% of Black, and 32% of White caregivers). Black and White caregiver service-users were significantly more likely to report a burden than their peers using no service (59% versus 36% of Black, p=0.04, and 90% versus 41% of White, p<0.001, caregivers). There was no significant difference in burden among Hispanic caregivers (59% versus 69%, p=0.65). In each racial/ethnic category, caregivers reported similar prevalence of exhaustion and feeling overwhelmed from caregiving whether they used a service or not. Based on these cross-sectional data, we hypothesize that Black and White caregivers who feel burdened use services more often, and that service use mitigates caregivers’ feelings of being exhausted or overwhelmed by caregiving, despite burden. Racial/ethnic differences highlight the need to understand contextual factors that influence caregiver burden and service use.

NOT KNOWING OTHER AFRICAN AMERICAN BEREAVED DEMENTIA CAREGIVERS: SEMISTRUCTURED INTERVIEW RESULTS

Abstract Semi-structured interviews focused on African American bereaved dementia caregivers and the individual who may serve them in the Twin Cities of Minnesota. The four questions that drove these interviews were linear in nature: 1. What needs exist among African American bereaved dementia caregivers in the Twin Cities? 2. What services exist to help these individuals meet their needs? 3. If unmet needs exist, would the group support model meet those needs? and, 4. If this model is promising, what adaptations might it need to best serve African American bereaved dementia caregivers? Interviews showed that needs exist at points before and after caregiving ends to increase education and destigmatize dementia in African American communities to facilitate understanding, acceptance, and validation during and after caregiving. Support from those who have gone through similar situations is increasingly important both during and after dementia caregiving, but identifying those in similar situations is difficult (few could identify any other African American Bereaved Dementia Caregivers besides themselves). While a culturally specific support group model was of interest to some to create a feeling of comfort, others emphasized that the main importance was a bonding over shared experiences, regardless of cultural background. A former dementia caregiver support group might be held in various locations and hosted by varying individuals, including at a church, hair salon, or even a grocery store. Overall, it was seen as important for there to be a specific meaning, purpose, and goals for a group of African American former dementia caregivers.

The Benefits of Caregiver Support Groups.

The Benefits of Caregiver Support Groups.

Huntington's Disease: Understanding Its Novel Drugs and Treatments.

An inherited neurodegenerative ailment called Huntington's disease (HD) of gradual physical impairment, cognitive decline, and psychiatric symptoms. It is brought on by a mutation of the HTT gene, which causes aberrant huntingtin protein buildup in neurons. This predominantly affects the striatum and cerebral cortex, where neuronal malfunction and eventual cell death follow. The quality index of life for both patients and their families is significantly impacted when symptoms first appear in mid-adulthood. An overview of the available therapies for HD is given in this article. Although HD has no known treatment options, there are several that try to lessen symptoms and reduce the disease's development. By lowering involuntary movements, pharmaceutical treatments like tetrabenazine and deutetrabenazine focus on motor symptoms. Antidepressants and antipsychotic medicines are also used to manage the mental and cognitive symptoms of HD. The investigation of prospective gene-based medicines is a result of research into disease-modifying medications. Reduced synthesis of mutant huntingtin protein is the goal of RNA interference (RNAi) strategies, which may halt the course of illness. Additionally, continuing research into Clustered Regularly Interspaced Short Palindromic Repeats and CRISPR-associated protein 9 (CRISPR-Cas9) and other gene editing methods shows promise for reversing the genetic mutation that causes HD. Individuals with HD can benefit from non-pharmacological therapies such as physical therapy, speech therapy, and occupational therapy to increase their functional abilities and general well-being. Supportive treatment, psychiatric therapy, and caregiver support groups are also essential in addressing the difficult problems the illness presents. In conclusion, tremendous progress is being made in the domain of HD treatment, with an emphasis on symptom control, disease modification, and prospective gene-based therapeutics. Even though there has been significant improvement, more study is still required to provide better therapies and ultimately discover a solution for this debilitating condition.

A Transdiagnostic Prevention Support Group for Caregivers of Children With Autism Spectrum Disorder: A Case Example

Caregivers of children with autism spectrum disorder (ASD) experience increased levels of stress, anxiety, and depression compared to caregivers of neurotypical children. The high levels of stress and the prevalence of emotional disorders experienced by caregivers may negatively impact their capacity and confidence to effectively manage their child’s complex emotional and behavioral needs. Given these demands, caregivers of children with ASD require additional support to improve their psychological well-being and parenting self-efficacy. While support programs and treatments for children and adolescents with ASD are abundant, prevention programs that specifically targeted the emotional well-being of caregivers during the COVID-19 pandemic were limited. In this case paper, we describe Coping Options for Parent Empowerment (COPE), a prevention program for parents adapted from the Unified Protocols for Transdiagnostic Treatment of Emotional Disorders in Adults, Children, and Adolescents developed during the pandemic. To alleviate the stressors faced by caregivers during the pandemic and beyond, including increased caregiving responsibilities and financial difficulties, Project COPE targeted parent anxiety and depression through four brief, telehealth group sessions provided free of cost for caregivers of school-age children with ASD. In the case example presented, decreases in anxiety and depression, and increases in parent self-efficacy were reported after completing this program. Key insights about the intervention’s feasibility and content reported by parents are described. Findings suggest that the intervention removes some treatment access barriers typically seen in caregivers of children with ASD during and following the pandemic and that the program can be modified to increase engagement and acceptability.

Social Identity and Online Support Groups: A Qualitative Study with Family Caregivers

BackgroundThe purpose of this study was to explore whether a sense of collective or shared group identity was developed in one established online social support group for family caregivers and, if so, what did group identification mean for the group members and how was this cultivated in the group.MethodsEighteen semi-structured interviews were carried out with members of a family caregiver online support group in Ireland. Inductive and deductive reflexive thematic analysis drawing on the social identity approach (SIA) generated four main themes and several related subthemes.ResultsThe first main theme generated was The group are a Tribe and the Tribe gets it, with subthemes: Invisibility as a common experience, my Tribe understands I am more than just a carer and Just being part of the Tribe can be enough. The second main theme generated was the Tribe is a lifeline and life-changing, with related subthemes: Our connection relieves experiences of loneliness and social isolation and Sharing knowledge, experience and support made me feel visible. The third and fourth main themes generated were The leadership of group moderators helped create the Tribe identity and Lessons that can be learnt. These findings are discussed in relation to the social identity approach, social isolation and loneliness.ConclusionsWe concluded that group identity can be cultivated through considered, active and balanced moderation, creating a safe, welcoming and supportive space where family caregivers are able to have fun and seek information, advice and emotional support, which helps relieve loneliness and social isolation.

GLOBĖJŲ Į(SI)GALINIMO RAIŠKA SAVITARPIO PAGALBOS GRUPĖJE

The childcare system in Lithuania is going through extensive changes in order to ensure the preparation and assessment of people who want to care for or adopt a child, on-call guardians have appeared, care centres have started operating in all municipalities, a unified agreement of guardians (carers), on-call guardians, adoptive parents and community children has been approved, as has the GIMK training and counselling programme for nursing home workers. Individuals who want to become a child’s guardian are trained and evaluated, and mutual support groups have started being organised. This is one of the measures aimed at strengthening, supporting and providing assistance to guardians (care givers), and there is an opportunity to solve issues relating to child custody. There are more and more guardians (care givers) who face difficulties in communicating with the ward, their relationship is strained, and the child experiences learning and adaptation difficulties, as a result of which the guardianship process is becoming more and more complicated. The current problem is manifestations of non-constructive behaviour that arise in adolescence, which worsen if these problems are not solved. A frequent guardian (carer) turns to care centre specialists, social workers and psychologists for help. Children’s guardians (carers) need constant qualified assistance from specialists and the state, because only in this way can guardians properly and competently perform their duty and meet the child’s needs and interests. This article analyses the experience of a mutual support group for care givers, and presents a qualitative study. The results of the study confirm the effectiveness of this type of support, and allow us to predict and design other support measures for care givers.