Informal Network Members Research Articles

Exploring the Support Provided by the Formal and Informal Network Members during “Hospital at Home” Treatment from a Nursing Perspective: An Interview Study

Exploring the Support Provided by the Formal and Informal Network Members during “Hospital at Home” Treatment from a Nursing Perspective: An Interview Study

The Helping Networks of Transgender Women Living with HIV

Transgender women living with HIV face significant barriers to healthcare that may be best addressed through community-centered interventions holistically focused on their HIV-related, gender-related, and other important needs. Community health ambassador (CHA) interventions (education and training programs designed to engage communities and community leaders in health promotion) may be an effective option, though information about the natural helping networks of this vulnerable population is too limited to inform the implementation of this approach. This study uses social network analysis to describe the natural helping networks of transgender women living with HIV, their help-seeking patterns for HIV-related, gender-related, and ancillary resources, and the characteristics of potential network ambassadors. From February to August 2019, transgender women living with HIV in the US (N = 231) participated a 30-min online survey asking them to describe their natural helping networks (N = 1054). On average, participants were embedded within natural helping networks consisting of 4–5 people. They were more likely to seek help from informal network members vs. formal service providers (p < .01), and from chosen family and partners/spouses (p < .05) above other social connections. Older network members (p < .01), other transgender women (p < .05), and those with whom they regularly engaged face-to-face (p < .01) (vs. social technology) were identified as potential network ambassadors for HIV-, gender-related, and other important issues. These findings suggest an opportunity to develop CHA interventions that leverage existing help networks and potential network ambassadors to promote equitable access to HIV, gender-affirming, and other crucial resources among this medically underserved group.

COMMUNITY CONTEXT OF OLDER ADULT CARE: A CASE STUDY DURING THE COVID-19 PANDEMIC

Abstract Introduction Expectations for older adults (OA) to live in the community and prevent costly long-term care assume OAs’ informal network members are available, able, and willing to fill this need. Yet, little is known about the processes whereby OAs construct care networks, especially during COVID-19. Methods A longitudinal case study of one OA male who participated in the ethnographic community Older Adult Care study in one urban Chicago neighborhood is described. The OA male described his network on three occasions: 2/2018, 1/2021 and 9/2021. The care networks were described by size, density, and transitivity. Data analysis was performed using the R programming language. Adjacency networks were constructed using the network package, then visualized using the sna package. Results The OA’s network went from 23 members pre-pandemic in time one to 13 in time two and 8 members in time three. As network size contracted, the network density increased from 25% in time two to 46% at time three, indicating a more interconnected network. Clustering varied over time and was at its lowest in time 2 (27%) and increased by time 3 (67%). Friends and church connections were 72% of his network in time one, whereas 71% of his network were family and neighbors in time three. Conclusions Our OA’s large, relatively disconnected social network tightened to fewer, more closely connected members during COVID-19 months. Contextual variables (environment, health guidelines, fear, pets) influenced the networks. It is essential to understand OA care networks to promote healthy aging in community.

Mining Teacher Informal Online Learning Networks: Insights From Massive Educational Chat Tweets

Social-media-based teacher learning networks have the affordance to grant flexibility of time and space for teachers’ professional learning, support the development and sustainability of social networking, and meet their just-in-time needs for exchanging knowledge, negotiating meaning and accessing resources. However, most existing research on teacher online learning networks relies on qualitative methods and self-report data. There is a lack of study using quantitative methods to study large networks, especially using authentic data from social media. This work adds to the literature through mining teacher informal online learning networks using authentic data retrieved from Twitter. Specifically, we collected around half a million tweets and developed a network with the data. Then, various social network analysis techniques were utilized to explore the network structure and characteristics, participants’ behavioral patterns and how individuals connected with each other. We found that members of massive teacher informal online learning networks tended to communicate more with others of similar characteristics forming homogeneous communities, while hub participants connected many small communities which are significantly from one another, and hence, are the key to degree heterogeneity in a large network.

Systematic review of lay consultation in symptoms and illness experiences in informal urban settlements of low-income and middle-income countries

ObjectivesLay consultation is the process of discussing a symptom or an illness with lay social network members. This can have positive or negative consequences on health-seeking behaviours. Understanding how consultation...

Rural influences on the social network dynamics of district nursing services: A qualitative meta-synthesis.

Background and AimsAs demands on healthcare services grow, fiscal restrictions place increased emphasis on services outside of traditional healthcare settings. Previous research into long‐term‐conditions suggests that social network members (including weaker ties such as acquaintances, community groups, and healthcare professionals) play a key role in illness management. There is limited knowledge about the engagement of social networks in supporting people who are receiving medical interventions at home. This qualitative metasynthesis explores the work and the interactions between district nurses (DN) and informal network members supporting people who are receiving medical interventions at home and living in rural areas.MethodsA search was undertaken on CINAHL, Medline, and PsychINFO for qualitative research articles from 2009 to 2019. Studies that examined DN in rural locations and/or social network support in rural locations were eligible. Fourteen articles were selected.ResultsThematic analysis of results and discussion data from the studies resulted in four themes being developed: the development of both transactional and friend‐like nurse‐patient ties in rural localities, engagement of the wider network in the delivery of good care, blurring of professional boundaries in close community relationships, and issues accessing and navigating formal and informal support in the context of diminishing resources in rural areas.These findings suggest that DNs in rural localities work beyond professional specialties and experience to provide emotional support, help with daily tasks, and build links to communities. There was also evidence that nurses embedded within rural localities developed friend‐like relationships with patients, and negotiated with existing support networks and communities to find support for the patient.ConclusionsFindings indicated that developing strong links with patients and members of their networks does not automatically translate into positive outcomes for patients, and can be unsustainable, burdensome, and disruptive. DNs developing weak ties with patients and building awareness of the structure of individual networks and local sources of support offers avenues for sustainable and tailored community‐based nursing support.

Senior' Use of Text Messages and SNS and Contact with Informal Social Network Members

Senior' Use of Text Messages and SNS and Contact with Informal Social Network Members

Dependency as Status: Older Adults’ Presentations of Self as Recipients of Care

We draw on Bourdieu’s and Goffman’s theories to elaborate the novel idea of dependency as status in old age, a concept that emerged from our Grounded Theory study conducted with 46 older adults (26 women and 20 men) living in and around Dublin, Ireland. The research participants’ portrayals of (in)dependence and assistance reflected their access to and use of social and symbolic (age) capital. Older adults derived social capital from supportive family relations or trusting relationships with formal care providers, and deployed such capital to signal their status as “cared for” individuals. Age capital—constructions of deservingness drawing on advanced age, age-related disabilities, and lifelong contributions—was used by older adults to frame and justify acceptance of help. We argue that where older adults are able to draw on age capital or social capital, they can signal their position as “cared for” individuals who display and acknowledge their dependency, and transform it into a marker of status. Conversely, some participants were keen to present themselves as independent. These participants made downward comparisons with others whom they saw as “worse off” or, in their view, as insufficiently responsible for their own health and well-being. In the contemporary Western frame, dependency is to be avoided at all costs, but we argue that some older people are able to embrace dependency in a way that reflects and demonstrates their status and agency. Care professionals and members of informal networks can make a significant difference to older persons’ acceptance of help, care, and support by offering services in a manner that affirms the care recipients’ worth and agency.

Correlates of Help-Seeking Intentions among Airmen in the Context of Family Maltreatment Perpetration: Practical Barriers as a Moderating Influence

Efforts are warranted to understand correlates of formal help-seeking among active-duty military members self-reporting family maltreatment perpetration. Drawing from the Integrated Model of Determinants of Behavioral Intentions, we evaluate a hypothesized model in which the intention to seek formal services is associated with a set of plausible social-psychological variables. Practical barriers to help-seeking is assessed as a moderating influence. A representative sample of 5326 Airmen (88% male) from the 2011 Air Force Community Assessment Survey who self-reported recent family maltreatment perpetration is used for structural equation modeling to estimate direct associations between social support and intention to seek services, and indirect associations via career stigma, unit-based stigma, and sense of community. Social support is negatively associated with career stigma and unit-based stigma, and positively associated with sense of community. Career stigma and sense of community are negatively associated with intention to seek services. Significant indirect effects include a positive effect between social support and intention to seek services via a reduction in career stigma, and a negative effect via increases in sense of community. Higher levels of practical barriers magnify most associations. Especially when facing practical barriers, social support can both increase help-seeking intentions by reducing career stigma, and reduce intentions, either directly or indirectly by strengthening a sense of community. Military leaders should address career stigma perceptually and systematically, and engage in public awareness efforts and trainings to position members of informal networks to guide individuals with problematic behavior toward relevant formal services.

INTEREST GROUP SESSION—HOSPICE, PALLIATIVE AND END-OF-LIFE CARE: ADDRESSING ADVANCED ILLNESS CHALLENGES THROUGH SYNERGY, PLANNING, COLLABORATION, AND ADVOCACY

Advanced illness occurs when health conditions become serious, general health and functioning declines, and treatments begin to lose their impact. Advanced care planning (ACP) is critical, but challenges such as communication barriers, system fragmentation, and a lack of formal and informal supports can negatively influence ACP and quality of life. How can diverse groups of persons with advanced illness, their family members and friends have greater synergy when planning for care in the face of serious illness? What are the best practices for planning and provision of a spectrum of needed services and support during the dying process and afterwards? We extend a conversation important for formal and informal network members to transform the culture of ACP, death, dying, and bereavement for diverse vulnerable populations. For this symposium, we will present information on ACP and care for LGBT populations and older Latinos, those living in long-term care settings, and persons receiving Adult Protective Services (APS). We will discuss strategies for synergy, collaboration, and advocacy among persons with advanced illness and their formal and informal care networks as a means of reducing health disparities and promoting self-determination in the midst of advanced illness challenges.

Female Intimate Partner Violence Survivors' Experiences With Disclosure to Informal Network Members.

With the growing recognition of the importance of disclosure to informal network members (INMs) in shaping experiences for survivors of intimate partner violence (IPV), numerous quantitative studies have examined these processes, but have not provided detailed descriptive analyses of the disclosure process. Yet, these descriptive data can be a rich contribution in their own right given the dearth of knowledge about IPV disclosure. This article presents in-depth descriptive data on a Mid-Atlantic metropolitan area sample of 200 female IPV survivors' experiences with disclosure to their INMs (collected using a one-time, online survey). Most survivors (66%) disclosed to at least one INM during their initial violent relationship. The three most commonly experienced reactions to disclosure were INMs listening to the survivors' feelings, urging the survivors to talk about how they felt, and expressing that the violent partners' behaviors were problematic. The three least commonly experienced reactions were INMs blaming survivors or saying that they deserved to be treated that way, offering financial assistance, and telling them to stop talking about the incident(s). Among survivors who disclosed to their INMs, 93.9% agreed that disclosure to their INMs helped them in some way. Survivors had disclosure experiences that were relatively comparable with other survivor samples, indicating good external validity. The findings regarding reactions to disclosure were also comparable with previous studies, although the extant published literature was quite limited. Young female survivors experience a variety of reactions from their INMs, most often experiencing supportive and subjectively "positive" reactions. As the research delving into the influences and impacts of disclosure expands, close attention should be paid to how these variables are being collected and disseminated so that we have a better understanding of what happens during disclosure to INMs.

Support needs of parents with intellectual disabilities: Systematic review on the perceptions of parents and professionals.

This review aimed to examine the perceptions of parents, professionals and informal network members regarding support needs of parents with intellectual disabilities (ID). In accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement, five databases were systematically searched and 19 qualitative studies were reviewed using thematic analyses. No data were available on the perceptions of the informal social network. Data on parents and professionals were categorized in four themes (type of support, sources of support, conditions of successful support and characteristics of support members). Data from professionals did not refer to emotional support needs or to the potential support of volunteers, friends and neighbours. Data from parents indicated a preference to be treated as 'full' parents, whereas professionals tended to focus on disabilities of parents. Results and implications contribute to insights into support needs of parents with ID from different perspectives and may help identify new entry points to improve future interventions and working alliances.

Ageism in informal care network members of older women.

Negative attitudes toward aging are common among formal healthcare providers, but have been infrequently assessed among informal caregivers providing assistance to older adults. The current study sought to identify factors associated with ageism toward older women. Multivariate hierarchical linear regression model. Lower-income neighborhoods in an urban setting in the Midwestern USA. 144 care network members of White and African American women aged ≥ 65 years. Age Group Evaluation and Description (AGED) Inventory assessed attitudes toward older women; CES-D scale measured depressive symptoms; Intergenerational Affectional Solidarity Scale assessed relationship closeness. In bivariate analyses, African American caregivers endorsed more positive attitudes toward older women. In the multivariate regression model, attitudes toward older women were associated with care recipient health (β = 0.18, p < 0.05) and relationship closeness with the care recipient (β = 0.23, p < 0.05). However, these associations were fully mediated by care recipient-specific attitude ratings by the care network member. The association between person-specific attitudes and general attitudes was uniquely directional. Findings from the present study are consistent with past research suggesting that 'ageism' may, at least in part, derive from bias against perceived poor health. Further, our findings of an association between attitude toward the care recipient and attitudes toward older women in general provide support for cognitive psychology theory which emphasizes the role of personal experience in stereotype formation through the availability heuristic. The current study underlines the necessity for development of interventions to address ageism in informal caregivers.

Human Resource Management Patterns of (Anti) Corruption Mechanisms within Informal Networks

In this article, we propose to comprehend the corruption mechanisms of tender bidding processes in terms of Human Resource Management (HRM) practices within informal networks. Taking the context of Kazakhstan, we analyze the behavior of individual actors as members of informal networks. Our analysis shows that both corruption and anti-corruption mechanisms can be explained in terms of HRM practices such as (camouflaged) recruitment (e.g., of powerful government officials via network ties), compensation (e.g., kickbacks for corruption; social recognition or shame for anti-corruption) and performance management (e.g., demonstrative punishment for corruption; extreme formalization, peer pressure or social sanctions for anti-corruption).

Social Connectedness in Family Social Support Networks: Strengthening Systems of Care for Children with Special Health Care Needs.

Current approaches to addressing the problems families face when navigating complex service systems on behalf of their children rely largely on state or nationally driven efforts around the development of systems of care (SOCs). However, operationalizing meaningful family involvement within SOCs remains a challenge, with little attention paid to the role of personal social support networks (PSSNs). Specifically, risk factors related to the variations in the social connectedness of family social support networks are difficult to identify, assess, and track over time. This paper summarizes families’ descriptions of their PSSNs and describes the development of a social network analysis tool, the Person-Centered Network App (PCNA), used to measure and monitor the social connectedness of families of children with special health care and developmental needs. Twenty-nine families participated in the project and completed social network surveys, identifying a total of 38 unique types of support partners and 230 partnerships (dyadic relationships). Families identified a range of formal and informal members including primary care providers, medical specialists, family, friends, faith-based organizations, insurance providers, nurses, community organizations, early interventionists, school resources, other families, online support groups, and public resources, rating 61 percent of them as “very important.” Informal network members (e.g., family, friends) provided emotional and day-to-day support. Primary care providers, medical specialists, and public resources provided health care services while early intervention and medical specialists provided therapies. PSSNs were characterized by high levels of trust but low levels of coordination. These findings inform providers and case workers that families can readily describe their social connectedness in ways that may affect health care access and utilization. Understanding how PSSNs function in the lives of families of children with complex health care needs provides opportunities for improving systems of care (e.g., medical homes) and ultimately, enhancing health and developmental outcomes.

South African primary health care allied health clinical practice guidelines: the big picture

BackgroundGood quality clinical practice guidelines (CPGs) are a vehicle to implementing evidence into allied health (AH) care. This paper reports on the current ‘state of play’ of CPGs in a lower-to-middle-income country (South Africa), where primary healthcare (PHC) AH activities face significant challenges in terms of ensuring quality service delivery in the face of huge PHC need.MethodsA qualitative study was conducted, using semi-structured interviews with purposively-sampled individuals involved in AH PHC CPGs in South Africa. They included national and state government policy-makers, academics and educators, service managers, clinicians, representatives of professional associations, technical writers, and members of informal professional networks. The interview data was transcribed and de-identified, and analysed descriptively by hand-coding. The COREQ statement guided study conduct and reporting. A framework to guide research in other countries into perspectives of AH PHC CPG activities was established.ResultsOf the 32 invited, 29 people participated: of these 25 were interviewed and four provided meeting notes. Most participants had multiple professional roles, being engaged concurrently in clinical practice, academia, professional associations and / or government. Key themes comprised Players (sub-themes of sampling frame, participants, advice, role players and collaboration); Guidance (sub-themes of nomenclature, drivers, purpose, evidence sources) and Role of AH in PHC (sub-themes of discipline groupings, disability and rehabilitation, AH recognition).ConclusionThere was consistently-expressed desire for quality guidance to support better quality AH PHC activities around the country. However no international CPGs were used, and there were no South African CPGs specific to local PHC AH practice. The guidance gap was filled by non-evidence-based documents produced often without training, to deal with specific clinical situations. This led to frustration, duplication and fragmentation of effort, confusing nomenclature, and an urgent need for standardised and agreed guidance. We provided a standardised framework to capture perspectives on CPGs activities in other AH PHC settings.

Home as a place of caring and wellbeing? A qualitative study of informal carers and caring networks lived experiences of providing in-home end-of-life care

Although the burden of caring is well described, the value of home as a potential place of wellbeing and support for informal caring networks when providing end-of-life care is not well recognised. Interviews and focus groups with 127 primary carers and members of informal care networks revealed their collaborative stories about caring for a dying person at home. Four themes emerged from the data: home as a place of comfort and belonging; places of social connection and collaborative caring; places of connection to nature and the non-human; places of achievement and triumph. When support is available, nurturing carer wellbeing may be best achieved at home.

Sociolegal and practice implications of caring for LGBT people with dementia.

The needs of lesbian, gay, bisexual and trans (LGBT) people with dementia are poorly recognised. This is due partly to assumptions that all older people are heterosexual or asexual. One quarter of gay or bisexual men and half of lesbian or bisexual women have children, compared with 90% of heterosexual women and men, which means LGBT older adults are more likely to reside in care homes. Older LGBT people may be unwilling to express their sexual identities in care settings and this can affect their care. Members of older people's informal care networks must be recognised to ensure their involvement in the lives of residents in care settings continues. However, healthcare professionals may not always realise that many LGBT people rely on their families of choice or wider social networks more than on their families of origin. This article explores sociolegal issues that can arise in the care of older LGBT people with dementia, including enabling autonomy, capacity and applying legal frameworks to support their identities and relationships. It also highlights implications for practice.

The role of chronic pain and current substance use in predicting negative social support among disadvantaged persons living with HIV/AIDS

ABSTRACTChronic pain and substance use can strain the supportive relationships of persons with serious chronic illness, which may increase the likelihood of receiving negative, rather than positive, social support from informal caregivers and social network members. To our knowledge, this is the first study to longitudinally examine the effects of chronic pain and substance use on negative social support. The sample (N = 383) comprised disadvantaged, primarily African-American, persons living with HIV/AIDS with a history of injection drug use, 32.4% of whom reported frequent or constant pain in the prior 6 months. Using factor analysis and structural equation modeling, current substance use and greater levels of chronic pain positively predicted negative social support 12 months later, after controlling for baseline negative support, viral load, age and sex. We also found a significant interaction effect such that among those not using substances, there was a significant positive association between pain and negative support, but no such association among those currently using substances. The findings emphasize the importance of treatment of chronic pain and substance use in the supportive functioning of social networks of a disadvantaged population with serious chronic conditions and persistent health disparities.

Decision Support for Joint Replacement: Implications for Decisional Conflict and Willingness to Undergo Surgery.

The present study investigates age differences in the types of decision support that total joint replacement (TJR) candidates desire and receive when making the decision to pursue surgery. We consider the social structural (relationship to the patient) and experiential factors (network members' experience with TJR) that influence individuals' support preferences and the interactions of these factors with age. We also examine whether a lack of support is linked with increased decisional conflict and reduced willingness to undergo surgery. A telephone survey was conducted with 100 individuals (aged 40+) who were contemplating knee or hip replacement. TJR candidates desired and received decision support from health care providers, family members, and individuals who had previously undergone TJR. They reported higher deficits in informational and emotional support than in instrumental support. Overall, a lack of instrumental support was associated with greater decisional conflict; a lack of instrumental support and a lack of informational support were associated with reduced willingness to undergo TJR. Our findings point to the importance of involving both formal and informal network members in TJR discussions, and the need for informational guidance and practical assistance to reduce decisional conflict and uncertainty among individuals considering TJR.