Support Groups Research Articles

The journey to diagnosis of wild-type transthyretin-mediated (ATTRwt) amyloidosis: a path with multisystem involvement

BackgroundWild-type and hereditary transthyretin-mediated amyloidosis (ATTRwt and ATTRv amyloidosis, respectively) are progressive, fatal diseases with a broad range of clinical presentations and multisystem effects. Despite having a higher prevalence, ATTRwt amyloidosis is less well characterized due to its non-hereditary nature, and its relatively poorer disease awareness delays diagnosis. Understanding of its natural history has evolved in recent years, but this is largely based on physician-collected data rather than patients’ reports of their own experiences. A mixed methods approach was used to evaluate how the healthcare journeys of patients with ATTRv and ATTRwt amyloidosis compare.MethodsA quantitative survey was administered to US-patients diagnosed with both ATTRwt amyloidosis and ATTRv amyloidosis identified through a patient support group. Subsequent in-depth interviews with participants with ATTRwt amyloidosis were conducted. Quantitative data with related qualitative quotes from patients were produced to characterize their paths to diagnosis and the disease burden experienced.ResultsA total of 47 respondents completed the survey (ATTRv, n = 20 and ATTRwt, n = 27) and a total of 14 survey respondents with ATTRwt amyloidosis were interviewed. Survey results reported a high disease burden for patients with both conditions, with patients with ATTRwt amyloidosis reporting more diagnoses and procedures prior to their final diagnosis. Interviews with participants with ATTRwt amyloidosis revealed that patients face a high symptomatic burden of disease. Diagnosis was often delayed due to three key factors: (1) early signs of ATTRwt amyloidosis were often assumed to be related to old age; (2) many medical specialists working in silos were involved in participants’ diagnostic; and (3) there was a general lack of disease awareness. Early indicators such as carpal tunnel syndrome were often overlooked. Participants were typically diagnosed after the disease had progressed to include severe cardiac symptoms such as atrial fibrillation and severe shortness of breath. Sleep apnoea was also reported by a number of participants, with a considerable impact on quality of life.ConclusionsOur study provides insight into the overall impact of the patient journey on their quality of life and demonstrates how increased awareness of ATTRwt amyloidosis and more coordinated engagement with physicians could reduce the time to diagnosis.

Mothers of children with disabilities: exploring lived experiences, challenges, and divorce risk

This qualitative study explores the psychological challenges faced by divorced Saudi mothers who are raising children with disabilities. The study highlights the impact of having a child with a disability on marital stability and family issues, and the psychological challenges experienced by single mothers. Using semi-structured in-depth interviews, data were collected from five divorced mothers recruited from a private daycare center. Participants ranged in age from 34 to 53, each with one child with a disability, and an average divorce period of four years. The thematic analysis revealed that single/divorced Saudi mothers of children with disabilities experienced significant psychological strain characterized by fear, shock and attempts at religious acceptance to cope with their child’s condition. Additionally, these mothers reported facing substantial social challenges, including societal ridicule and limited remarriage prospects, highlighting the broader impact of having a child with a disability on their lives. The study underscores the need for tailored psychological support and interventions for families of children with disabilities, especially for mothers who are significantly impacted by the challenges associated with their child’s condition. Additionally, the study emphasizes the negative impact of societal attitudes towards disability, which can contribute to social problems and psychological distress for families. The study’s findings suggest the need for specialized clinics and support groups to help families cope with the unique challenges they face.

Challenges, coping strategies, and sources of support available to South African parents with children with autism spectrum disorder during the COVID-19 lockdown: a qualitative study

Parenting a child with autism spectrum disorder (ASD) is known to be complex and challenging and likely to be exacerbated under conditions of stress and uncertainty. We aimed to explore how parents experienced parenting their child with ASD during the initial COVID-19 lockdown in 2020. We also aimed to identify the coping strategies and sources of support available to them during this time. Using an exploratory qualitative design within an interpretivist paradigm, we interviewed 23 parents of children with ASD between the ages of 6 and 12 years. Parents were recruited from an online support group for ASD in South Africa. Interviews were semi-structured and transcribed verbatim for thematic analysis, using ATLAS.ti. We identified five themes: (1) The experience of communicating lockdown rules and disease containment measures to children, (2) Consequences of disruption to routine, (3) Parenting and interpersonal relationships in conditions of confinement, (4) Help-seeking and sources of support, and (5) Finding ways to cope amid a crisis. The findings demonstrate that the initial COVID-19 lockdown placed parents of children with ASD under considerable stress. Disrupted routines and interrupted access to financial, psychological, social, and educational support during the initial lockdown period exacerbated parenting experiences. This study highlights the importance of providing parents of children with ASD strategies to communicate significant change and various forms of support to navigate the negative effects of routine disruptions during conditions of uncertainty and crisis.

Online support groups for family caregivers: A qualitative exploration of social support and engagement

AbstractBackgroundThis qualitative research explored family caregivers’ engagement and social support in a single online support group (OSG). It sought to answer two research questions: Q1: Was social support evident in the OSG? If so what types and how did these types relate to engagement? Q2: Were elements from the Context, Content and Delivery conceptual framework evident in the OSG? If so, what were the key elements of this group?MethodsEighteen semi‐structured interviews were carried out with members of a family caregiver OSG in Ireland. Data were analysed using deductive qualitative analysis with a codebook created from one typology of social support and the Context, Content and Delivery conceptual framework for engagement in web‐based technologies.FindingsFor Q1, all types of social support were generated in the OSG. All had a positive impact on engagement. Informational support (17/18 respondents) and emotional support (15/18 respondents) were the highest support experienced by the group. For Q2, we found evidence for 11 key elements of the conceptual framework. Myriad sub‐elements had positive, negative and mixed impacts on engagement. These elements generally related to positive developments of social support by the respondents.ConclusionDrawing together the findings, we present a new framework, the Journey of Engagement and Support in Online Support Groups for Family Caregivers. This maps the stages for engagement and support in an OSG and can be used by practitioners for running OSG and researchers to generate testable hypotheses about the relationship between social support and engagement.

Virtual support group initiative for mental health professionals in the COVID-19 pandemic.

Virtual support group initiative for mental health professionals in the COVID-19 pandemic.

Supplemental Material for Virtual Support Group Initiative for Mental Health Professionals in the COVID-19 Pandemic

Supplemental Material for Virtual Support Group Initiative for Mental Health Professionals in the COVID-19 Pandemic

A multilevel modeling analysis of community-based mental health and psychosocial support group intervention for refugee newcomers in the United States.

A multilevel modeling analysis of community-based mental health and psychosocial support group intervention for refugee newcomers in the United States.

Different Deeds, Different Needs—Types of Violence Against Women and Social Support Sought Online

Women, as victims of violence, among which intimate partner violence prevails, venture online to seek a supportive community. Members of online support groups differ in the experiences and needs they have and support they seek. The objective of this research was to explore the difference in types of support sought and support received between women who self-report having been a witness/victim of violence and others who directly ask for help without explaining their circumstances. For this purpose, content analysis of 600 randomly selected starting posts from an online support community was performed. The results reveal an association between the needs expressed and the experience of violence described. Although users most frequently sought informational support, those recounting sexual violence more often asked for emotional support or were looking for an emotional release. Posts describing a different kind of violence were more likely to bring more support than short posts directly asking for help. The findings are important since women in a violent relationship tend to become more isolated or controlled by their partners, pointing to the crucial role of online support in helping and encouraging those women to take the first step in seeking help from formal institutions.

Normalcy Among Individuals Living With Long-Term Mechanical Circulatory Support: A Reflexive Thematic Analysis.

To explore descriptions of normalcy among individuals who have lived with mechanical circulatory support for a long time. Reflexive thematic analysis was used for this qualitative research. A parent study, utilising constructivist grounded theory, was conducted to explore the experiences of advance care planning among mechanical circulatory support individuals. Participants spontaneously shared their experiences of normalcy, which was outside the scope of the primary study. Thus, a secondary analysis using reflexive thematic analysis was performed to explore experiences of normalcy among individuals living with mechanical circulatory support for long-term use. Twelve transcripts were purposively sampled and analysed. Three major themes were derived from the data: acquiescence, adapting to the device and restructuring family roles. Normalcy continued to evolve years after device implantation because individuals were not prepared to face ongoing psychosocial challenges. Clinicians and researchers must address the complex emotional and social needs related to changes in goal therapy and unanticipated transplant delays. This includes the development of support groups that are aligned with the various stages of the MCS trajectory. Clinicians need to engage patients in conversations about disruptions to their perceived 'normal' lifestyle and how they plan to adapt to complex changes. Future support groups can be organised according to individuals' duration of implantation and goal therapy to reduce social withdrawal. Additionally, clinicians should assess bridge to transplant individuals' attitudes before connecting them with transplanted volunteers. Finally, clinicians can support resilience by recognising and discussing the ongoing work required to adapt to the complex changes throughout the mechanical circulatory support trajectory. Perceptions of normalcy among mechanical circulatory support individuals are subject to ongoing change. Findings will inform clinicians of the social, emotional and familial challenges that require ongoing support and resources for long-term mechanical circulatory support individuals. Reporting adhered to the COREQ checklist. Participants contributed to this study by sharing their experiences of normalcy after living with mechanical circulatory support for 2 years or more.

An environmental scan of limb loss rehabilitation centers across Canada.

The clinical landscape of limb loss rehabilitation across Canada is poorly delineated, lacks standard rehabilitation guidelines, and is without a shared clinical database. To address these gaps, the objective of the present study was to undertake an environmental scan of the rehabilitation centers across Canada that provide inpatient and/or outpatient services to the limb loss community. An environmental scan was conducted to describe the rehabilitation service structure, program services, and outcome measures of sites across Canada. A survey was sent to 36 rehabilitation centers providing care to people with amputations. Of the 36 centers, 31 completed the survey (11 = Ontario; 8 = Quebec; 6 = British Columbia; 2 = Saskatchewan; 2 = New Brunswick; 1 = Alberta; 1 = Manitoba). Twenty-five provided both inpatient and outpatient services, 1 provided inpatient care only, and 5 provided only outpatient services. Interprofessional services were provided to a wide range of upper extremity amputation and lower extremity amputation patient populations. Range of motion was the most commonly collected outcome for both patients with upper extremity amputation and lower extremity amputation. With regard to prosthetics and orthotics fabrication, 9 of the sites had these services on-site while 15 had off-site fabricators, 6 had both, and 1 provided no response. Our findings highlight that limb loss rehabilitation and prosthetic care delivery is variable across Canada with respect to clinical team members, locations of services, and complementary services such as mental health treatments and peer support groups.

Field survey of support groups for people with neurodevelopmental disorders in Japan.

This study conducted a systematic review of support groups currently active in accommodating individuals with neurodevelopmental disorders in Japan. The characteristics of the 86 approved support groups for neurodevelopmental disorders are detailed in the Supplementary Materials.

Impact of Long COVID symptoms on individuals in Hong Kong: Implications for occupational therapy practices

Introduction: From occupational therapy perspective, this study investigates the nature and impact of Long COVID symptoms on individuals in Hong Kong according to their gender, age, and occupation and to understand their treatment needs Method: A total of 193 participants with an acute COVID-19 episode 3 months ago and having recovered from it who were experiencing subjective symptoms of Long COVID were recruited through snowball sampling from local COVID-19 support groups and healthcare facilities to participate in a cross-sectional design via an online survey assessing their symptoms and the impact on daily activities, and exploring their treatment preferences. Findings: Respiratory, systemic, sleep, and cognitive symptoms were found to be the most prevalent, with significant variations in symptom severity and impact on daily life across different age and occupational status groups. The treatment preference was quite strongly inclined to traditional Chinese medicine. Conclusion: This study has uncovered the critical and yet recognized roles of occupational therapy in managing Long COVID impact by identifying the potential gaps of occupational therapy in its management and calling for advocating promotion in the community and interdisciplinary collaboration with traditional Chinese medicine. Implications about occupational therapy management and the healthcare policies for tailoring treatment programs are discussed.

A sensing system and solving method for dynamic detection of relative pose of hydraulic support group

The precise detection of the pose of hydraulic support groups is crucial for the construction of intelligent coal mines. Addressing current challenges in comprehensive position sensing of support groups, such as one-sided descriptions, missing information, and limited detection capabilities, this paper, based on the concept of digital twin, proposes a sensing system and solving method for dynamic detection of the relative pose of hydraulic support group. Initially, a relative pose detection model, based on the six-point localization principle, is proposed by combining existing sensor information. Then, a sensing system is designed, incorporating a photoelectric detection device for monitoring key position parameters and virtual sensors for determining pose information. Consequently, a method for dynamically deriving relative positions, driven by the fusion of real-virtual iterative solving, real-virtual error feedback, and iterative condition optimization, is established. Finally, a relative pose dynamic detection system for a hydraulic support prototype is constructed in a laboratory environment. Experimental results demonstrate that the sensor system and the relative position detection method designed in this paper achieve a relative position accuracy of over 95.32 % for the hydraulic support, with a dynamic reconstruction time of less than 0.2 s. This verifies the rationality of the sensor system and the feasibility and accuracy of the dynamic deduction method. To sum up, this work provides a theoretical foundation and technical support for the autonomous perception of hydraulic support group, autonomous frame adjustment between frames, and overall straightness adjustment. It also lays the groundwork for further research and the advancement of information-physical systems in the fully-mechanized mining face.

Theoretically informed codesign of a tailored intervention to support pressure ulcer prevention behaviours by older people living in their own homes in the UK and their lay carers: an intervention codesign study (C-PrUP)

ObjectiveTo codesign a theoretically underpinned, healthcare practitioner-mediated, tailored intervention to support housebound older patients and their lay carers to adopt pressure ulcer prevention behaviours.DesignTheoretical domains framework informed codesign.SettingOne geographical area...

Society for endocrinology guideline for understanding, diagnosing and treating female hypogonadism.

Female hypogonadism (FH) is a relatively common endocrine disorder in women of premenopausal age, but there are significant uncertainties and wide variation in its management. Most current guidelines are monospecialty and only address premature ovarian insufficiency (POI); some allude to management in very brief and general terms, and most rely upon the extrapolation of evidence from the studies relating to physiological estrogen deficiency in postmenopausal women. The Society for Endocrinology commissioned new guidance to provide all care providers with a multidisciplinary perspective on managing patients with all forms of FH. It has been compiled using expertise from Endocrinology, Primary Care, Gynaecology and Reproductive Health practices, with contributions from expert patients and a patient support group, to help clinicians best manage FH resulting from both POI and hypothalamo-pituitary disorders, whether organic or functional.

Shades of support: Exploring racial dynamics in a robust gynecologic oncology support group

Shades of support: Exploring racial dynamics in a robust gynecologic oncology support group

‘Online boundary-work’: How people with diabetes negotiate what counts as legitimate knowledge in Facebook peer support groups

‘Online boundary-work’: How people with diabetes negotiate what counts as legitimate knowledge in Facebook peer support groups

Exploring mothers' metaphorical sensemaking of dyslexia.

Through a reflexive thematic analysis of a large online support group for dyslexia and a sensemaking lens, this study investigated how mothers made sense of their child's dyslexia through metaphors. Mothers used metaphors to characterise their feelings surrounding dyslexia, their school-based interactions and their identity as advocates. The language mothers use offers a generative, textured way to understand the lived experiences of supporting a child with learning differences. Whilst mothers articulated much frustration and anger, they also voiced encouragement, advice-giving, empathy and hope, illustrating how their sense of agency was both threatened and empowered by the experience of having a child with dyslexia. There is much mothers must process, understand and navigate surrounding their child's dyslexia and the findings underscore the need for early school-based screening, support and intervention.

Impact of non-invasive ventilation on microbial colonisation patterns in preterm infants: a single-centre study.

The objective of this study is to assess the relationship between non-invasive ventilation (NIV) and the colonisation of oral and nasal microbiota in preterm infants within the neonatal intensive care unit (NICU). A prospective cohort study. The NICU of Zhejiang University Children's Hospital. Patients include preterm infants with a gestational age of 28-35 weeks, enrolled within the first 24 hours of life. Infants were categorised based on respiratory support: NIV, which included nasal continuous positive airway pressure, nasal intermittent positive pressure ventilation or high-flow nasal cannula; and no respiratory support, defined as room air or low-flow nasal cannula at ≤2 L/min. The primary outcome was the colonisation of oral and nasal microbiota at 5 days post birth, measured by colony-forming units per millilitre (CFU/mL), with colonisation defined as bacterial growth >103 CFU/mL. The study included 100 preterm infants, with 50 in each group. Nasal microbial colonisation was observed in 56% (28/50) of the NIV group, significantly higher than the 28% in the no respiratory support group. No significant differences were found in oral colonisation. Adjusted binary logistic regression showed an association between NIV and increased risk of nasal colonisation (adjusted OR=2.91, 95% CI 1.12 to 7.58, p=0.028). NIV in preterm infants was linked to a higher risk of nasal microbial colonisation. This finding suggests the need for further research and consideration of infection control strategies in the NICU.

The Unmet Treatment Need for Eating Disorders: What Has Changed in More Than 10 Years? An Updated Systematic Review and Meta-Analysis.

A minority of individuals with eating disorders seek help from health professionals qualified to provide eating disorder care. This review assessed the proportion of individuals with eating disorders who had sought help or received treatment, as an update to an earlier review conducted more than a decade ago. Three databases were searched for studies that: (1) included a community sample of help-seekers and non-help seekers, (2) used a standardized eating disorder screening instrument, and (3) assessed the percentage of participants who had sought help specifically for eating disorder concerns. Of 972 articles, 21 studies met inclusion criteria, representing 37,423 participants. The pooled proportion reporting help-seeking from any source (e.g., helpline, support groups, chat rooms as well as health professionals) was 30% and the pooled proportion reporting formal treatment seeking from health professionals (e.g., psychologist) specifically for eating disorder concerns was 32%. However, there was evidence of publication bias across studies. These rates suggest little to no improvement in the unmet need for treatment since the last review with studies continuing to focus on white adult women. Help-seeking rates among other populations remain unclear and there is an urgent need to understand reasons for overall low help-seeking rates. Clear definitions and measures of help-seeking with appropriate distinctions between sources of help are needed to improve our understanding of help-seeking pathways and identify solutions to facilitate help-seeking. Better visibility of health professionals qualified to provide safe and effective eating disorder care could help reduce the substantial treatment gap.