Organizational characteristics of Brain Injury Clubhouse Model programs.

OBJECTIVE: We provide an overview of the Clubhouse Model and the history and development of Brain Injury Clubhouses. We describe organizational-level characteristics associated with eight Brain Injury Clubhouses to address gaps in the literature and inform future studies or program development. METHODS: A electronic survey, the Clubhouse Profile Questionnaire (CPQ) was tailored for Brain Injury Clubhouses. The CPQ gathers program-level data that can be used to identify active ingredients of Clubhouses, understand best practices, examine, and evaluate program characteristics. The brain injury version of the CPQ was administered to a sample of eight Clubhouses affiliated with the International Brain Injury Clubhouse Association as part of a project designed to gather data on Clubhouse program characteristics and describe sociodemographic characteristics of people served by Brain Injury Clubhouses. RESULTS: CPQ data from eight Brain Injury Clubhouses was analyzed. Brain Injury Clubhouse programs in this sample served approximately 17 members per day. There was wide variability in the size, funding and funding mechanisms, and length of operation of Brain Injury Clubhouses in this study. CONCLUSIONS: Findings suggest that Brain Injury Clubhouses offer a wide range of services and supports. Additional research on the impact of Brain Injury Clubhouses is needed.

COVID-19 lockdown disrupts support networks integral to maintaining foot health: a mixed-methods study.

BACKGROUND: In response to the COVID-19 pandemic, populations were advised to remain at home to control viral spread. Government-mandated restrictions on free movement affected individuals' engagement with physical activity, with reported increases leading to biopsychosocial health benefits and conversely increased sedentary behaviour leading to poorer health. Good foot health is key to enabling physical activity and maximal participation in activities of occupation and daily living. METHODS: A population-based cross-sectional study was performed, using a web-based platform. Quantitative and qualitative data were captured through responses to closed and open survey questions. Anybody with a foot health condition was eligible to participate in the online survey. Links were sent through professional networks, support groups and charities, using a snowball strategy to maximise participation. RESULTS: Two hundred fifty-five respondents completed the survey. Most (n = 193, 75.69%) reported an ongoing foot pain or problem that had been present for 4 weeks or longer, whilst 49 respondents (19.22%) noted a new pain or problem. Pain was the most frequently reported symptom (n = 139, 54.51%), whilst change in appearance of the foot was also commonly reported (n = 122, 47.84%), often alongside the observable presence of swelling. Musculoskeletal foot symptoms were frequently reported (n = 123, 48%), and were significantly associated with reported reduced physical activity (X2 = 6.61, p = 0.010). Following qualitative analysis five themes and 11 subthemes emerged, informed by 49 independent codes. A central theme of lockdown disrupting support networks, both formal (healthcare providers) and informal (friends or family members) emerged. The 5 sub-themes were: 1. foot pain is a constant companion, 2. self-care, 3. 'cope or crumble' scenarios, 4. future intent to access healthcare and 5. reduced ability to undertake physical activity. CONCLUSIONS: Pain was the most frequently reported foot problem during COVID-19 lockdown restriction. Lockdown restrictions disrupted support networks integral to maintaining foot health. Poor foot health impacted people's ability to remain physically active. Complaints previously considered relatively 'minor' such as support for skin and nail care, were found to be exacerbated by restricted support networks, leading to greater negative impact.

CE: Providing Care for Caregivers During COVID-19.

ABSTRACT: Care for the Caregiver is a peer-to-peer program that provides support and guidance to clinicians who have experienced an unexpected and emotionally distressing event. Its development was preceded by communication and resolution programs that were endorsed by the Joint Commission in 2001, subsequently introduced at several U.S. medical centers, and in 2009 were incorporated within demonstration projects funded by the Agency for Healthcare Research and Quality. In August 2014, the authors introduced the Care for the Caregiver program across the MedStar Health System, which includes seven hospitals in Maryland and three in the District of Columbia. Here, they describe how the program was initially conceived and structured-and how it evolved in response to the current pandemic.

Potential of organizing unmarried adolescent girls and young women into self-help groups for a better transition to adulthood: Findings from a cross-sectional study in India.

It is essential to equip adolescents with the right information and appropriate skills for a quality transition to their adulthood. This study examines the individual agency of unmarried adolescent girls and young women (AGYW) who were organized into self-help groups (SHG) as compared to those who were not in groups. The paper uses data from a cross-sectional survey conducted with 872 unmarried AGYW aged 15-21 years from 80 villages across two districts of Uttar Pradesh, India. The dependent variables were AGYW's financial independence, collective action, decisionmaking, mobility, self-expression, generalized perceived self-efficacy, gender norms attitudes, and attitudes toward violence. The primary independent variables were group membership and the duration of the membership. Bivariate and multiple logistic regression analyses were conducted to examine the relationship between group membership and various components of individual agency. More than half of the respondents, with an average age of 18 years were enrolled in school or college and one-third had 12 or more years of education. The group members, compared to non-members, were significantly more likely to be financially independent (odds ratio [OR] = 2.29, p<0.01), to take collective action for entitlements (OR = 3.80, p<0.01), and to have progressive attitudes toward gender roles and norms (OR = 1.43, p<0.05). A longer duration of group membership increases the likelihood of financial independence, collective action, and decisionmaking ability. The study highlights the need for further investment in adolescent girls' programming and highlights the potential of organizing AGYW into SHG and using the 'platform' to bring change in their lives and consequential individual agency.

The Pandemic's Toll-A Case for Clinician Support.

Healthcare providers perform lifesaving work in unusually stressful work environments due to the challenges and related risks of battling the unprecedented COVID-19 pandemic. The potential personal and professional toll is substantial. This article describes how one healthcare facility benefited from existing peer support resources to address workforce well-being, ensuring that resources were available to support workforce resilience throughout the protracted COVID response.

Patient experiences of self-care management after radical prostatectomy.

PURPOSE: Prostate cancer is the most common cancer form in Sweden and side effects of the leading treatment, radical prostatectomy, include urinary leakage and erectile dysfunction. Patients are recommended to perform self-care to reduce side effects, but their experiences of performing self-care management after radical prostatectomy are largely unexplored. The aim of this study was to deepen the understanding about patient experiences of support for managing self-care during the first six months after radical prostatectomy. METHODS: Eighteen patients were consecutively recruited six months after surgery and individual interviews were conducted. The study had a descriptive qualitative approach and inductive content analysis was used. RESULTS: Patients described self-care management during the first half-year after surgery as a progression with growth in self-management skills through interconnected phases, from initially striving to get a grasp of the situation and find supportive relationships, to getting grounded in the new situation and taking command of the situation. At six months after surgery, patients had reached a point where they needed to maneuver feelings about long-term consequences. CONCLUSIONS: Standardized routines ensure a certain level of care, but are sparsely adjustable to patients' progression in self-care management. For sustained self-care behaviors, tailored and interactive support is required from multiple disciplines and peers, in order for a patient to get grounded in and take command of the situation.

Developing a support group for carers of people living with dementia.

Significant numbers of people in the UK care for someone living with dementia. Providing support for carers is socially and economically important, enabling them to continue in their caring role and improving their day-to-day experience of caring. This article comprises a reflection by one dementia nurse specialist who ran a six-week educational support group for carers of people living with dementia. It describes the development of the group and the challenges faced, as well as discussing the future of the group, including the need to ensure its sustainability through collaborative working. The article also details some of the positive outcomes described by carers who attended the group.

Providing addiction services during a pandemic: Lessons learned from COVID-19.

During the COVID-19 pandemic, social distancing measures have made in-person mutual help groups inaccessible to many individuals struggling with substance use disorders (SUDs). Prior to the pandemic, stakeholders in our community had sponsored a program to train volunteers to facilitate local Self-Management and Recovery Training (SMART Recovery) groups. As a result, the community established seven weekly SMART Recovery groups, which more than 200 community members attended. In March 2020, the community discontinued these groups due to the COVID-19 pandemic. To provide SMART Recovery during social distancing, we developed a one-on-one phone-in service for people with SUDs and addictions: the SMART Recovery Line (SMARTline). In this paper, we share our experience training volunteers to facilitate SMART Recovery groups and SMARTline. As a result of our experience, we have learned to: (1) establish plans in advance to migrate services from face-to-face settings to remote platforms; (2) consider remote platforms that are easily accessible to the greatest number of individuals; (3) include as many stakeholders in the planning process as possible; (4) consider recruiting volunteers to help in the provision of services, especially since many people want to help fellow community members during crises; and (5) anticipate and prepare for crises well before they occur.

Association Between Systolic Blood Pressure and Cardiovascular Inpatient Cost Moderated by Peer-Support Intervention Among Adult Patients With Type 2 Diabetes: A 2-Cohort Study.

OBJECTIVES: People with type 2 diabetes and increased systolic blood pressure (SBP) are at high risk of cardiovascular disease (CVD). In this study, we aimed to investigate the association between CVD-related hospital payments and SBP and tested whether this association is influenced by diabetes peer support. METHODS: Two cohorts comprising people with type 2 diabetes were included in the study. The first cohort comprised 4,704 patients with type 2 diabetes assessed between 2008 and 2009 from 18 general practices in Cambridgeshire and followed up to 2009-2011. The second cohort comprised 1,121 patients with type 2 diabetes from post-trial follow-up data, recruited between 2011 and 2012 and followed up to 2015. SBP was measured at baseline. Inpatient payments for CVD hospitalization within 2 years since baseline was the main outcome. The impact of 1:1, group or combined diabetes peer support and usual care were investigated in the second cohort. Adjusted mean CVD inpatient payments per person were estimated using a 2-part model after adjusting for baseline characteristics. RESULTS: A "hockey-stick" relationship between baseline SBP and estimated CVD inpatient payment was identified in both cohorts, with a threshold at 133 to 141 mmHg, suggesting increased payments for patients with SBP below and above the threshold. The combined peer-support intervention altered the aforementioned association, with no increased payment with SBP above the threshold, and payment slightly decreased with SBP beyond the threshold. CONCLUSIONS: SBP maintained between 133 and 141 mmHg is associated with the lowest CVD disease management costs for patients with type 2 diabetes. Combined peer-support intervention could significantly decrease CVD-related hospital payments.

Assisting Faith-Based Organizations Increase Sense of Belonging during the Covid-19 Pandemic.

The Covid-19 pandemic has negatively affected the three basic needs of individuals. Faith-based organization leaders are carrying the additional weight of stewardship of members during these challenging times. Many Faith-based organization leaders feel a sense of responsibility to create environments where members feel a sense of belonging. Five considerations for Faith-based organization leaders hoping to increase belonging are discussed below. Specifically, low-cost options are presented that could be implemented in small-to-large Faith-based organizations.

The complex geographies of telelactation and access to community breastfeeding support in the state of Ohio.

The availability of breastfeeding support resources, including those provided by Baby-Friendly Hospitals, International Board Certified Lactation Consultants, breastfeeding counselors and educators, and volunteer-based mother-to-mother support organizations, such as La Leche League, are critically important for influencing breastfeeding initiation and continuation for the mother-child dyad. In addition, the emergence of community support options via information and communication technologies such as Skype and Facetime, social media (e.g., Facebook), and telelactation providers are providing mothers with a new range of support options that can help bridge geographic barriers to traditional community support. However, telelactation services that use information and communication technologies to connect breastfeeding mothers to remotely located breastfeeding experts require reliable, affordable, high-quality broadband connections to facilitate interaction between mothers and their support resources. The purpose of this paper is to explore the complex spatial landscape of virtual and face-to-face breastfeeding support options for mothers in the state of Ohio (U.S.), identifying barriers to support. Using a range of spatial and network analytics, the results suggest that a divide is emerging. While urban areas in Ohio benefit from both a density of face-to-face breastfeeding support resources and robust broadband options for engaging in telelactation, many rural areas of the state are lacking access to both. Policy implications and several potential strategies for mitigating these inequities are discussed.

A nurse- and peer-led psycho-educational intervention to support women with gynaecological cancers receiving curative radiotherapy: The PeNTAGOn randomised controlled trial - ANZGOG 1102.

OBJECTIVE: Radiotherapy for gynaecological cancer is associated with multiple adverse effects. This randomised controlled trial evaluated the impact of a combined nurse- and peer-led psycho-educational intervention on psychological distress, preparation for treatment, quality of life, psychosexual function, unmet needs and vaginal stenosis. METHODS: Eligible women had a confirmed diagnosis of gynaecological cancer, scheduled to receive radiotherapy with curative intent, aged ≥18 years, and able to read and write English. Participants randomly assigned one-to-one to either four nurse-led consultations plus four peer-led telephone sessions, or to usual care. Participants completed study measures at baseline, immediately before first radiotherapy (FU1), and four weeks (FU2), three (FU3), six (FU4), and 12 months (FU5) post radiotherapy. The primary outcomes were psychological distress at FU1 and FU2 measured by the Hospital Anxiety and Depression Scale. RESULTS: Of 840 eligible participants, 625 were approached and 319 (51%) consented; 158 assigned to intervention, 160 to usual care with 1 withdrawing before randomisation. Between-groups differences for primary outcomes were trivial- and small-sized, (both p > 0.05). Notable effects on secondary outcomes favouring the intervention at FU2 included preparation for treatment (sensory/psychological concerns, d = 0.57; and procedural concerns, d = 0.52) and specific needs domains (sexuality needs, d = 0.38; and health system and information needs, d = 0.41). CONCLUSIONS: There was no evidence that a nurse- and peer-led intervention had a beneficial effect on psychological distress compared to usual care. However, improved treatment readiness and lower health system and sexuality needs indicate the intervention may have addressed outcomes known to be important to this population.

Regional variation in vestibular schwannoma management and patient support group participation across the United States.

PURPOSE: The Acoustic Neuroma Association (ANA) represents the largest existing patient support organization for those diagnosed with vestibular schwannoma (VS) in the United States. Yet, the degree to which the ANA is actually utilized across the country is unknown. Moreover, evidence suggests that there may exist significant regional variation in management practices of VS across the United States. MATERIALS AND METHODS: Patient participation in the ANA by state and geographical region, as well as their management approach, was reviewed through a cross-sectional survey performed from February 2017 through January 2019, patients diagnosed with sporadic VS. RESULTS: Among 878 patients studied, the District of Columbia had the largest proportion of ANA patients relative to state population (0.85 per 100,000 persons), followed by New Hampshire (0.74), Maine (0.60), and New Jersey (0.42). Comparatively, Mississippi (0.03), Hawaii (0.07), and Rhode Island (0.09) harbored significantly lower participation rates (p = 0.001). Significant treatment variations were observed across the United States: in Maine, Iowa, Missouri, Kansas, and New Hampshire, an average of 73% (range, 70-75) of patients underwent microsurgery, whereas only 24% (range, 0-35) of patients in Colorado, New York, Massachusetts, Connecticut, and West Virginia underwent microsurgery (p < 0.001). After controlling for patient age and tumor size, patients were significantly more likely to undergo a retrosigmoid approach than the translabyrinthine approach for medium- to large-sized tumors in the Northeast (OR = 4.18; p = 0.001) and Western United States (OR = 2.94; p = 0.009). CONCLUSIONS: Large regional variation exists surrounding patient participation in the ANA as well as management practices across the United States.

"Personal recovery depends on NA unity": an exploratory study on recovery-supportive elements in Narcotics Anonymous Flanders.

BACKGROUND: Mutual aid organizations, such as Narcotics Anonymous (NA), can provide support in substance use disorder (SUD) recovery processes. However, research on NA and its recovery-supportive elements is scarce and perspectives of NA-members remain understudied, in particular outside the US. Therefore, this study aims to gain insight into recovery-supportive elements of NA, as experienced by its members. METHODS: To explore the perspectives on and experiences with recovery-supportive elements in NA, 11 in-depth interviews with NA-members were conducted in Flanders (Belgium). Interviews were audio-taped, transcribed verbatim and analyzed by using CHIME-D, a personal recovery framework (Connectedness, Hope, Identity, Meaning in life, Empowerment, Difficulties) developed by Leamy and colleagues in 2011. RESULTS: Various recovery-supportive elements of NA were highlighted, with Connectedness as a key component including opportunities for building up a social network and for providing a safety net or sounding board. Elements that enabled Connectedness were 1) a non-judgemental approach, and 2) mutual understanding through sharing in NA. Other elements of the CHIME-D framework were less frequently mentioned, although these were inextricably linked to Connectedness. CONCLUSIONS: Connectedness appeared to be the crucial recovery-supportive element in NA, emphasizing the relational character of SUD recovery. Although other elements of the CHIME-D framework were identified, these were closely related to and intertwined with the concept of connectedness.