Informal Support Group Research Articles

ASSESSING THE COMPLEXITIES OF LONG-TERM SERVICES AND SUPPORTS FOR OLDER ADULTS OF TEXAS

Abstract Background Long-term services and supports (LTSS) encompass a broad range of medical and personal care assistance needed by individuals who are unable to perform self-care tasks due to aging, chronic illness, or disability. The No Wrong Door (NWD) System is a statewide network that coordinates the system of access to long-term services and supports. As an offshoot of the person-centered planning movement, the NWD System is premised on ensuring that no matter where individuals first interact with the system, they are guaranteed comprehensive information, assessment, and services. This work will help the Texas Health and Human Services Commission create a consumer-driven, cost-effective, and efficient system. Methods A mixed methods approach was constructed to understand the challenges and barriers to accessing LTSS, assess NWD System performance based on stakeholder perspectives, and identify community needs. Results Of 4,153 respondents, 56% identified as an adult 50 years or older and 53% older adults reported a LTSS need in the past year. The top three problems faced when trying to get services include a confusing system, long service wait times, and not knowing where to get help. Unpaid informal caregiver respite services, caregiver education, and caregiver support groups were among the services and supports that inadequately met people’s needs. Conclusions: Our results form the blueprint for facilitating access to care throughout Texas to ensure vulnerable populations obtain a high quality of life. Recommendations for the NWD system include effective community outreach and streamlined application processes for services and supports.

Challenges for Formal Organizations Engaging Volunteers During Regular and Crisis Times According to Polish and Italian Volunteer Coordinators

AbstractThe recent crises in Europe impacted the volunteering patterns within formal organizations that provide support in regular and crisis times. In our paper, we investigated how volunteer coordinators from formal entities (public/governmental and non-governmental) perceive (1) the patterns of volunteering engagement (long-term versus episodic) in regular and crisis times, (2) the processes of retaining volunteers during crises; (3) the trust of the community toward various types of organizations during social crises; (4) the role of informal support groups in relation to the tasks of their organization. Between June and October 2023, we performed an online-based study (total N = 55)—in Poland (N = 28) and Italy (N = 27). The survey had multiple-choice and open-ended questions, and the results were analyzed qualitatively using the thematic analysis framework. The findings indicated that volunteer coordinators reckon that long-term and episodic volunteers play crucial and complementary roles in helping organizations achieve their objectives. This implies that organizations should recognize the value of both types of volunteers and consider them essential resources for pursuing organizational goals. The results also suggest that the volunteer retention strategies are worth outlining or revisiting within organizations, and attention should be paid to psychological support. According to coordinators, trust in non-governmental organizations is perceived as crucial in the beneficiaries' decisions about where to seek help. Collaboration with informal groups is advised, given that the goals can be achieved together, mutually using the resources provided by both types of helping entities.

Behind the Paywall

This study investigates how the networks of communication and collaboration between adult content creators on OnlyFans, a digital patronage platform commonly used for sex work, have gained the site its popularity and notability. Because of the site’s infrastructure, content creators must self-promote on other platforms, drawing users from social media platforms like X, Instagram, TikTok, and Reddit onto OnlyFans. Given that this promotional labour and skill is largely unpaid, this study also examines the power dynamics at play in the complex labour structures of OnlyFans and the precarity of the broader gig economy. OnlyFans adult content creators create their own support systems, assisting each other with this labour based on their skills, and developing formal and informal support groups for professional and personal guidance.

Treatment of polymyalgia rheumatica: British Society for Rheumatology guideline scope.

The last British Society for Rheumatology (BSR) guideline on PMR was published in 2009. The guideline needs to be updated to provide a summary of the current evidence for pharmacological and non-pharmacological management of adults with PMR. This guideline is aimed at healthcare professionals in the UK who directly care for people with PMR, including general practitioners, rheumatologists, nurses, physiotherapists, occupational therapists, pharmacists, psychologists and other health professionals. It will also be relevant to people living with PMR and organisations that support them in the public and third sector, including charities and informal patient support groups. This guideline will be developed using the methods and processes outlined in the BSR Guidelines Protocol. Here we provide a brief summary of the scope of the guideline update in development.

PP11 Patient Involvement In Drug Evaluations To Inform Funding Decisions: A Singapore Case Study

IntroductionPatient involvement has become increasingly integral to health technology assessment (HTA) processes globally due to greater recognition of the important contribution patients make to address uncertainties in the scientific evidence base and interpret results for real-world implementation. To align with best practices and encourage meaningful patient input in HTAs in Singapore, patient involvement processes were established by the Agency for Care Effectiveness (ACE) in 2021. This presentation discusses how patient groups were identified in Singapore and describes the new patient involvement processes.MethodsIn the absence of a centralized database, a stakeholder mapping exercise was undertaken in 2021 to identify all relevant patient and volunteer groups in Singapore. A comprehensive search of the Singapore Charity Portal, hospital websites, standard search engines and social media platforms was conducted.Identified groups were screened in line with specific inclusion criteria and contacted via email and cold calling to find out more about their remits. Plain English resources, targeted training materials and a process guide to encourage patient involvement in ACE’s work were co-developed with local patient organizations by drawing upon best practices from overseas HTA agencies contextualized to local patients’ needs. Supporting resources and processes were revised in 2022 based on ACE’s experience receiving inputs from patients and caregivers to inform drug HTAs.ResultsOne hundred and six patient groups covering 20 conditions were identified including registered organizations and informal support groups. In the first half of 2022, ACE received responses from 82 patients from ten patient organizations to inform seven drug HTAs for cancer, diabetes, HIV, and other conditions in line with the new patient involvement processes. Patient organizations viewed the opportunity to submit testimonials of their lived experience with different conditions as a meaningful and important activity for their members.ConclusionsPatient involvement processes have improved the legitimacy and acceptance of ACE’s work and will be continuously revised to ensure that they remain relevant and meet patients’ expectations and needs.

Phd Support Groups: From Sceptic to True Believer

PhDs can be lonely and challenging endeavours; students come across setbacks, imposter syndrome sets in, motivation wanes and productivity slows (Denman et al, 2018 : Gin et al, 2021). However, when students can access quality support, these issues can be overcome (Naylor et al, 2018 : Elliot, 2020). Nonetheless, there can be challenges in being able to access this and pitfalls leading to negative experiences. In order to explore this, this essay will reflect on my own experiences of one type of support: informal PhD support groups. I joined my support group when I started to struggle with my PhD in 2021 despite my scepticism of the benefits and time ‘cost’. However, it has offered me the benefits of advice, reassurance, community and collaboration by the way in which it is run and how the members approach it. Thus, I have been converted from sceptic to true believer and I will conclude this essay by encouraging all fellow PhD students to give them a chance. Keywords: PhD support groups, advice, reassurance, community, collaboration

Adding amusement to anxiety: uses of humor in informal caregiver support groups

ABSTRACT This study assessed how informal caregivers for people with dementia humorously communicate about their caregiving tasks and experiences. Support groups for informal caregivers for people with dementia were observed, and instances of humor were thematically analyzed. Informal caregivers used humor at specific moments, including when sharing struggles and exchanging advice, and they used various types of humor, including affiliative, self-defeating, aggressive, supportive, and contestive humor. Informal caregivers’ humor use may operate as an effective coping technique and supportive strategy of reinforcement and encouragement, but humor may also be harmful or detrimental to supportive interactions. These findings offer helpful insights into informal caregivers’ communication patterns and reveal humor’s potential to bring individuals relationally closer together, even over difficult topics such as dementia.

Teacher Training for Online Education in Oman: A Case Study at Two English Language Teaching Institutions

This study is a joint research project carried out in two different academic institutions in Oman during the Covid-19 pandemic. The research aims to identify the perceptions of teaching faculty and administrators on the advantages and disadvantages of online education. It also explores how the training process for online teaching occurs and what support is provided afterwards. Qualitative methodology was adopted and data were collected through semi-structured interviews from a representative sample of teaching faculty and administrators from both institutions. Interview data were thematically analyzed using NVivo qualitative analysis software. Findings suggest that participants perceive more disadvantages of online education than the advantages demonstrating a rather negative perception. The training was decided mainly by administrators and focused on essential technical skills. Participants expressed a need for effective online pedagogical training. Short, practical sessions suitable for teachers at different skill and experience levels were suggested by the participants as well as informal peer support groups for continuous professional development after the training. There was some indication of administrative support in mainly infrastructure areas, which can be improved by employing specialist online education support staff. Further, peer support through formal committees or informally through colleagues was found to be accessible and practical. Findings from this study and the literature review can be used in other international contexts for effective provision of online education.

The MI-PHOTOS Project: Understanding the Health and Wellbeing of Rural Historically Marginalized Mothers Through Photovoice.

Despite the persistent health inequities faced by rural women in the United States, few researchers have partnered with women in rural communities to co-create sustainable change. To fill this gap, Mothers Improving Pregnancy and Postpartum Health Outcomes Through stOry Sharing (MI-PHOTOS) employed a community-based participatory research (CBPR) approach by partnering with mothers, community leaders, and community-based organizations in Robeson County, North Carolina, a rural, racially diverse county. The project's aims were (a) to promote maternal health by listening to mothers' stories of having and raising children in their community and (b) to develop a shared understanding of these mothers' strengths and challenges. MI-PHOTOS utilized photovoice, an exploratory and qualitative CBPR methodology. Grounded theory guided data analysis. During photovoice discussions, conversation focused on maternal experiences and evoked strengths, facilitators, and barriers impacting maternal health. Themes focused on (a) MI-PHOTOS serving as a social support group for the community and family stressors that mothers faced and (b) the necessity of professional support programs. Three overarching findings emerged during this process: (a) MI-PHOTOS as an informal support group, (b) mental health stigmatization, and (c) the need to bridge home visiting programs with peer and confidential therapeutic services. Future work should incorporate mothers' and communities' strengths into program development by drawing on existing home visiting programs, identifying opportunities for peer-support, and creating referral networks for individual, confidential therapeutic services. Through continued community partnership, we can generate fuller understandings of mothers' experiences of having and raising children and ultimately promote health equity among rural mothers.

Seeking Virtual Support: Social Media in the Advanced Cancer Experience Among Adolescents and Young Adults (AYAs) (SCI941)

1.Describe the types and roles of digital media adolescents and young adults reporting to be most helpful in coping with their advanced cancer diagnosis.2.Propose potential interventions for leveraging digital technologies for optimizing psychosocial support of adolescents and young adults with cancer. A cancer diagnosis, especially advanced cancer, interferes with adolescent/young adult (AYA) peer relationships. AYAs increasingly use digital technologies (i.e. social media, videogames) as a social instrument; little is known about the role of digital technologies in the AYA cancer experience. To describe the AYA experience with advanced cancer, including sources of psychosocial support. Semi-structured interviews were conducted with 32 English-speaking AYAs (14-25 years) with advanced cancer (relapsed/refractory disease, estimated survival <50%). Interviews were audio-recorded, de-identified, and transcribed verbatim. Questions focused on communication and sources of psychosocial support. Three coders (CW, AS, KB) applied directed content analysis using Dedoose software. Discrepancies were reconciled by consensus meetings. When asked about sources of support, social media, multi-player online games, and texting were identified as modalities for seeking and maintaining peer support. Three themes emerged regarding the role of digital technologies: distraction, maintaining relationships with peers during treatment away from home, and (especially among young adults) identifying similar-aged AYAs with cancer to build informal support groups. One adolescent shared: “…I talk with people on my game, and they know my situation. I kind of just play games with them and talk to them about where I am stuck.” Another adolescent shared: “I was able to keep in contact with all my friends from high school [through social media]…. And a lot of video games, because that’s where I talk to my cousins and other friends.” Negative consequences were acknowledged, such as the reminder of missing out on “normal” age-appropriate activities, but to a lesser extent. AYAs with advanced cancer cite digital technologies as a mechanism for maintaining peer relationships and seeking psychosocial support.

Cleaners and labourers on Facebook? Bulgarians in the UK between free movers and a digital diaspora

ABSTRACT This study explores the way Bulgarians living in the UK interact online. We rely on an online survey of attitudes among Bulgarians in the UK, participant observation in Bulgarian support networks during the period 2016-20, as well as qualitative interaction analysis over the course of six months (2019-20), adapted for non-visual environments, of top posts from the largest online support groups. Our findings point to the gradual consolidation of organised informal support among Bulgarians, especially and predominantly among those of ‘low-status’ occupations and more precarious migration journeys. We also observe a trend of emancipation and entrepreneurship enabled by online networks in the almost complete absence of formal associations of Bulgarians in the UK. Finally, we acknowledge the importance of the context of crisis and precarity for the emergence of informal support networks online. What this tells us about Bulgarians in the UK is that, while often avoided by so called ‘elite migrants’, informal support groups have begun to function as quasi-diasporic communities assisted by online social networking platforms, (still) facilitated by free movement but creating a unique transnational space between ‘home’ and ‘the foreign’ to enable mobility, interaction and belonging.

Online and Recovery-Oriented Support Groups Facilitated by Peer Support Workers in Times of COVID-19: Protocol for a Feasibility Pre-Post Study.

BackgroundIn times of pandemics, social distancing, isolation, and quarantine have precipitated depression, anxiety, and substance misuse. Scientific literature suggests that patients living with mental health problems or illnesses (MHPIs) who interact with peer support workers (PSWs) experience not only the empathy and connectedness that comes from similar life experiences but also feel hope in the possibility of recovery. So far, it is the effect of mental health teams or programs with PSWs that has been evaluated.ObjectiveThis paper presents the protocol for a web-based intervention facilitated by PSWs. The five principal research questions are whether this intervention will have an impact in terms of (Q1) personal-civic recovery and (Q2) clinical recovery, (Q3) how these recovery potentials can be impacted by the COVID-19 pandemic, (Q4) how the lived experience of persons in recovery can be mobilized to cope with such a situation, and (Q5) how sex and gender considerations can be taken into account for the pairing of PSWs with service users beyond considerations based solely on psychiatric diagnoses or specific MHPIs. This will help us assess the impact of PSWs in this setting.MethodsPSWs will lead a typical informal peer support group within the larger context of online peer support groups, focusing on personal-civic recovery. They will be scripted with a fixed, predetermined duration (a series of 10 weekly 90-minute online workshops). There will be 2 experimental subgroups—patients diagnosed with (1) psychotic disorders (n=10) and (2) anxiety or mood disorders (n=10)—compared to a control group (n=10). Random assignment to the intervention and control arms will be conducted using a 2:1 ratio. Several instruments will be used to assess clinical recovery (eg, the Recovery Assessment Scale, the Citizenship Measure questionnaire). The COVID-19 Stress Scales will be used to assess effects in terms of clinical recovery and stress- or anxiety-related responses to COVID-19. Changes will be compared between groups from baseline to endpoint in the intervention and control groups using the Student paired sample t test.ResultsThis pilot study was funded in March 2020. The protocol was approved on June 16, 2020, by the Research Ethics Committees of the Montreal Mental Health University Institute. Recruitment took place during the months of July and August, and results are expected in December 2020.ConclusionsStudy results will provide reliable evidence on the effectiveness of a web-based intervention provided by PSWs. The investigators, alongside key decision makers and patient partners, will ensure knowledge translation throughout, and our massive open online course (MOOC), The Fundamentals of Recovery, will be updated with the evidence and new knowledge generated by this feasibility study.Trial RegistrationClinicalTrials.gov NCT04445324; https://clinicaltrials.gov/ct2/show/NCT04445324International Registered Report Identifier (IRRID)PRR1-10.2196/22500

Emerging Patterns of Social Capital, Livelihoods and Sustainable Development in Post-Conflict Northern Uganda

This qualitative study, conducted in Oyam district northern Uganda, presents an ethnographic analysis of the transformation of the social capital available to former internally displaced persons (IDPs) by the Lords’ Resistance Army (LRA) conflict, and the implications for their livelihood strategies. Northern Uganda suffered a protracted two decade (1986-2006) civil war between the LRA and Government of Uganda. Forced conscription, abduction and eventual displacement into camps by the combatants shattered the mutual trusts and capital that communities had accumulated overtime. This paper applied case study design to investigate the emerging forms of social capital among former displaced persons and the respondents were purposively selected. In-depth interviews were held with Government civil servants and local leaders while focus group discussions were conducted with community members to explore opinions on the after-displacement livelihood strategies. Sustainable livelihoods and social capital theories were applied to analyse the relationship between social capital and livelihood resilience upon returning home from displacement. The findings indicated that while emerging from displacement, family members moved in phases with family heads and elder children returning first to prepare livelihood strategies. Both positive and negative networks emerged that influenced preference for social groups and livelihood activities. The established social groups comprised of ‘<i>doggola</i>’ (kinship) relationships, wage-labour, neighbours, friendship, alcohol consumption and informal social support groups. Despite the dynamics experienced in social capital and livelihood activities, the former IDPs modified and reverted to the traditional social capital. This paper concludes that amidst conflict and displacement, social capital sustains household welfare and community development hence, social capital does not vanish but changes forms. Thus, the post-conflict reconstruction programme ought to integrate social capital into its package for sustainability purpose.

Self-efficacy and organizational commitment among Spanish nurses: the role of work engagement.

The objective of this study was to verify the mediating role of work engagement between self-efficacy and affective organizational commitment on the basis of the Job Demands-Resources Model in a sample of Spanish nursing staff. Affective organizational commitment is a key element, both for the permanence of nursing staff and for the provision of an excellent quality of care of health organizations. However, the relationships between self-efficacy, work engagement and affective commitment to the organization have been little explored within the nursing context. A total of 527 nursing professionals from Spanish public hospitals in Andalusia were surveyed, obtaining a convenience sample of 324 participants (52.96% nurses, 47.04% nursing assistants). The mediating role of work engagement was examined using structural equationmodelling and the bootstrapping method. The results showed that affective organizational commitment was positively predicted by self-efficacy and work engagement. Work engagement had a direct effect on affective organizational commitment, while the effect of self-efficacy on affective commitment was totally mediated by work engagement. The results give empirical support to the Job Demands-Resources Model, which raises the mediating role of work engagement between self-efficacy (personal resource) and affective organizational commitment (organizational result). Health organizations should be aware that a greater perception of efficacy beliefs and work engagement strengthens the affective bond with the organization, thus improving the corporate image of the health institution. Policy changes are necessary to create work environments that enhance the self-efficacy of nursing staff and generate high levels of work engagement, such as flexible training plans and informal support groups.

Help-seeking barriers and facilitators for affected family members of a relative with alcohol and other drug misuse: A qualitative study

AimsTo identify affected family members' (AFMs) experiences of barriers and facilitators to informal and formal help-seeking for themselves and on behalf of a close relative with alcohol and other drug (AOD) misuse. MethodsQualitative study, informed by interpretative phenomenological analysis. Semi-structured, audio-recorded, telephone interviews were used to collect data from 31 AFMs. ResultsAFMs experienced several overlapping and at times competing help-seeking obstacles and enablers in accessing informal and formal support for themselves and on behalf of their relative with AOD misuse, and these are reflected in two themes and associated sub-themes: barriers to help-seeking and facilitators to help-seeking. Five help-seeking barriers were abstracted from the data: Stigma discourages help-seeking, Difficulty locating informal and formal support services, Previous negative AOD service help-seeking experiences deter subsequent help-seeking, Hopelessness inhibits help-seeking, and Feeling undervalued as an AFM. Three help-seeking facilitators were abstracted from the data: Previous positive help-seeking experiences increase future help-seeking, Overcoming shame and isolation and being open with trusted significant others, and Persevering in help-seeking. ConclusionsAFMs who access informal and formal help sources for themselves, and on behalf of their relative, are more likely to sustain their important support-giving role. Measures to strengthen AFMs' capacity and willingness to support their relative should be founded on an understanding of factors that affect their own help-seeking in addition to those encountered when help-seeking on behalf of their relative. Our findings have implications for the visibility of AOD services and informal support groups on the Internet, organisational culture of some AOD services, valuing the contributions of AFMs, and protecting AFMs and their relatives' privacy. Our findings also have implications for reducing public stigma of AOD misuse, changing some AFMs' scepticism about treatment outcomes, and reinforcing and enhancing AFMs' skills in persevering with help-seeking.

From ABD to PhD: A Qualitative Study Examining the Benefits of a Support Group During Dissertation in an Online Doctoral Program

This qualitative case study examines the personal experiences of the authors as members of an informal support group during the dissertation phase of their doctoral process. The group consisted of four Caucasian women ranging in age from 33 to 51 years of age when the group formed. Group e-mail messages in the form of archival data taken from their electronic conversations were analyzed, and thematic analysis with constant comparison resulted in three themes emerging: motivation, attachment, and cooperation. The depth of each theme is explored, and personal stories from each author are presented. The article concludes with recommendations that colleges and universities seek ways to encourage cohort group development, both in online and traditional graduate programs.

Establishing an informal mutual support group for carers of mentally Ill Patients: An exploratory survey from Nigeria

Background/Objectives: There are few, if any, support groups in Nigeria serving the needs of carers of mentally ill persons. The purpose of this study was to assess the need for a support group among carers of outpatients at a neuropsychiatric hospital in southern Nigeria. Materials and Methods: This study was a cross-sectional one involving 120 respondents who had been primary carers for at least 6 months. Carers completed a sociodemographic questionnaire and a 25-item carer survey questionnaire. Results: Responses from 106 participants were analyzed. The majority of carers were female (n = 60, 56%) and 60.3% were aged 31–60 years. Ninety-four (88.6%) participants reported some degree of stress in caring for the care recipient. Eighty-five participants (80.2%) reported a need for a support service, whereas 84 (79.2%) were interested in joining a group that would enhance their caring role. A carer being female and a subjective need for some form of support were significantly associated with interest in joining a carer group (P

Attainment of the Elusive: Attributions for Long-term Success in Kidney Transplantation.

Survival of a kidney transplant recipient beyond 2 decades is a relatively rare event. No studies have been conducted to describe individuals' longevity attributions, who have had their kidney transplant for many years. The purpose of this qualitative analysis was to examine longevity attributions of kidney transplant recipients who have had a kidney transplant for 25 years or longer. The initial sample was obtained from an informal support group that includes only those who have had their kidney transplant >25 years. A semistructured 1-hour interview was conducted over the phone, audio-taped, and transcribed. Data were examined using thematic content analyses. The sample consisted of 19 participants (7 males and 12 females) ranging in age from 43 to 67 years, with a mean age of 52.8 years (standard deviation [SD] = 6.82). Transplants were performed between 26 and 36 years prior to the interviews, with a mean of 30.7 years (SD = 3.2). Emerging attributions included maintaining a healthy lifestyle, social support, positive attitude, faith, normalcy, participation in decision making, and luck. Prior to transplantation, patients were engaging in self-management behaviors, which many attributed to their success posttransplant. The findings of this study may provide insight and understanding for health-care providers and other transplant recipients regarding longevity attributions of those who have had their kidney transplants for over a quarter century. Future research should explore the impact of supporting kidney transplant recipients in self-management prior to and after transplantation.

Informal Support Groups for Chairs

Informal Support Groups for Chairs

Efficiency of an intensive educational program for informal caregivers of hospitalized, dependent patients: cluster randomized trial.

BackgroundEducational initiatives for informal caregivers have proved efficient at reducing some of their symptoms, consequence of their involvement in care giving. However, more progress must be made in terms of the design of more successful interventions. Aims: Randomized clinical trial to test the efficiency of an Education Program for Primary Informal Caregivers of Hospitalized Dependent Patients in relation to their burden, mental and physical health, and care related knowledge.MethodsDesign: Cluster Randomized Trial. Sample: 151 participants, primary caregivers of hospitalized, dependent patients, carried out from February 2009 to March 2010. They were assigned at random to two groups: one received an intensive educational program (n = 78), and the other just a generic speech (n = 73). The degree of burden of caregivers was recorded (Zarit Test), as well as their physical and mental health (SF12) and their knowledge of caregiving, before, immediately, after and one and a half months after the intervention. These analyses were carried out according to the Generalized Estimated Equations Method, in order to assess any possible improvements.ResultsParticipants´ burden did not improve, as measured by Zarit Test (p = 0,338), nor did their physical (p = 0,917) or mental health (p = 0,345). However there was an improvement in their hygiene caregiving (p = 0,001) and mobility care giving (p = 0,001).ConclusionsCaregivers found useful the education program, providing them with an informal support group. Interventions need to be longer and more customized as well as adapted to specific demands. There is a lack of validated questionnaires to assess improvements in care knowledge. There is a need to develop programs that contemplate continuity of care from primary to specialized caregiving.Trial registrationCluster randomized trial: ESCPD2010