Caregiver Network Research Articles

Family Matters: Cross-Cultural Differences in Familism and Caregiving Outcomes.

The increasing number of minority older adults, and the subsequent increase in family members providing care to these individuals, highlights the need to understand how cultural values contribute to differential caregiving outcomes. Using the sociocultural stress and coping model as a guiding framework, the current study examined cross-cultural relationships among familism, social support, self-efficacy, and caregiving outcomes and examines how these relationships vary as a function of caregiver background characteristics. Baseline data were collected from 243 participants in the Caring for the Caregiver Network randomized controlled intervention trial. Participants completed measures assessing familism, social support, self-efficacy, positive aspects of caregiving, depression, and burden. African American and Hispanic participants exhibited higher levels of familism compared to Whites. Compared to White participants, African Americans' endorsement of familism predicted more positive caregiving appraisals. African Americans also reported greater levels of social support, which in turn predicted lower burden and depressive symptoms when compared with Whites. Exploratory analyses demonstrated significant associations between familism and self-efficacy. In the Hispanic subgroup, familism varied as a function of acculturation. Results indicate that greater levels of familism and social support may exert a protective influence against adverse psychosocial caregiving outcomes. These findings can be used to inform intervention efforts targeting culturally congruent, family-centered approaches.

Interpersonal Correlates of Dementia Caregivers' Emotional Support Networks: Considering Family History.

Caregiving networks of individuals with Alzheimer's disease and related dementias (ADRD) are comprised of family and friends directly involved in caregiving activities and those supporting these activities. The purpose of this study was to investigate whether caregiving-related behaviors and interactions (i.e., uplift, malfeasance, and nonfeasance), kinship tie (i.e., friend, family), and family history of ADRD were associated with caregivers' emotional support networks. Seventy-one caregivers across 30 families provided information about 776 network members. Perceived emotional support and interactions representing uplift, malfeasance, and nonfeasance were assessed. Results indicated that uplift and friendship were associated with increased, whereas nonfeasance was associated with decreased, likelihood of perceived emotional support. Caregivers with a family history of ADRD were particularly more likely to report emotional support from friends and uplifting network members. Findings suggest the need for differential strategies based on families' prior caregiving experience to facilitate positive and minimize negative interactions within caregiving networks.

Experiences of frail older cardiac patients with a nurse-coordinated transitional care intervention - a qualitative study

BackgroundOlder cardiac patients are at high risk of readmission and mortality. Transitional care interventions (TCIs) might contribute to the prevention of adverse outcomes. The Cardiac Care Bridge program was a randomized nurse-coordinated TCI combining case management, disease management and home-based rehabilitation for hospitalized frail older cardiac patients. This qualitative study explored the experiences of patients’ participating in this study, as part of a larger process evaluation as this might support interpretation of the neutral study outcomes. In addition, understanding these experiences could contribute to the design and application of future transitional care interventions for frail older cardiac patients.MethodsA generic qualitative approach was used. Semi-structured interviews were performed with 16 patients ≥70 years who participated in the intervention group. Participants were selected by gender, diagnosis, living arrangement and hospital of inclusion. Data were analysed using thematic analysis. In addition, quantitative data about intervention delivery were analysed.ResultsThree themes emerged from the data: 1) appreciation of care continuity; 2) varying experiences with recovery and, 3) the influence of an existing care network. Participants felt supported by the transitional care intervention as they experienced post-discharge support and continuity of care. The perceived contribution of the program in participants’ recovery varied. Some participants reported physical improvements while others felt impeded by comorbidities or frailty. The home visits by the community nurse were appreciated, although some participants did not recognize the added value. Participants with an existing healthcare provider network preferred to consult these providers instead of the providers who were involved in the transitional care intervention.ConclusionOur results contribute to an explanation of the neutral study of a nurse-coordinated transitional care intervention. For future purpose, it is important to identify which patients might benefit most from TCIs. Furthermore, the intensity and content of TCIs could be more personalized by tailoring interventions to older cardiac patients’ needs, considering their frailty, self-management skills and existing formal and informal caregiver networks.

Qualitative Investigation of Health Information Resources for Caregivers and Individuals Living With Spinal Cord Injury.

Objectives: To identify the information networks of caregivers and individuals with spinal cord injury (SCI) and how the health information is accessed and used. Methods: For this qualitative study, participants from the United States were recruited through hospital listservs, websites, social media, and word of mouth to participate in a phone interview. Fourteen individuals living with a traumatic SCI and 18 caregivers of individuals living with a traumatic SCI were interviewed using a semi-structured interview guide. The interviews were transcribed verbatim, coded using NVivo, and analyzed using qualitative thematic methods. Results: Participants reported that medical resources such as SCI specialists were considered the most reliable sources, but due to accessibility barriers the Internet was used the most. The Internet and social resources, such as online and in-person support groups, provided beneficial content information and emotional support, but they posed credibility concerns and left participants feeling unsure of reliability. Information gaps such as lack of education on basic care practices during the transition from acute to chronic care were identified by the participants. Conclusion: Because SCI is an overwhelming experience, it is difficult for patients to retain information in the initial acute care phase, leading to gaps in knowledge about long-term care. Patients are concerned about the reliability of online sources of information; therefore, there is a need for new methods of SCI information dissemination. Potentially, using primary care providers as conduits for information distribution might improve access to reliable long-term SCI information for caregivers and patients.

Patterns of stress and support in social support networks of in-home hospice cancer family caregivers.

Family caregivers of home hospice cancer patients often experience burden and distress, which can be mitigated by perceived social support. However, less attention has been paid to the non-family sources of support within social networks, or to how sources of support may also be sources of stress. We describe support and stress in social networks of hospice family caregivers and identify caregiving characteristics associated with classes identified in our data. We collected demographic and psychosocial self-report data from family caregivers providing in-home hospice care for advanced cancer patients (N = 90). Caregivers also reported perceived support and stress from specific family and non-family relationships. We identified three classes with unique patterns of stress and support within caregivers' support networks using a latent class analysis. Classes include: 1) high support, low stress across family and non-family network members ("supportive"; 53% of caregivers); 2) high support, high stress across family and non-family network ("ambivalent maximizers"; 26%); and 3) high support, high stress across family network only ("family-focused ambivalent"; 21%). Caregivers in the ambivalent maximizer class reported more burden than caregivers in the supportive class (p = .024). This is one of the first studies to systematically explore the role of non-family support, as well as how stress and support co-occur within relationships and across networks. As informal support networks of hospice family caregivers are complex and multifaceted, understanding the patterns of support and stress across various network members is essential to offer services to more effectively manage caregiver burden.

A fused mixed-methods approach to thematic analysis of personal networks: Two case studies of caregiver support networks

AbstractThematic analysis of personal networks involves identifying regularities in network structure and content, and grouping networks into types/clusters, to allow for a holistic understanding of social complexities. We propose an inductive approach to network thematic analysis, applying the learnings from qualitative coding, fused mixed-methods analysis, and typology development. It involves framing (changing focus by magnifying, aggregating, and graphical configuration), pattern detection (identification of underlying dimensions, sorting, and clustering), labeling, and triangulating (confirmation and fine-tuning using quantitative and qualitative approaches); applied repeatedly and emergently. We describe this approach utilized in two cases of studying support networks of caregivers.

Social support, nutrition and health among women in rural Bangladesh: complex tradeoffs in allocare, kin proximity and support network size.

Malnutrition among women of reproductive age is a significant public health concern in low- and middle-income countries. Of particular concern are undernutrition from underweight and iron deficiency, along with overweight and obesity, all of which have negative health consequences for mothers and children. Accumulating evidence suggests that risk for poor nutritional outcomes may be mitigated by social support, yet how social support is measured varies tremendously and its effects likely vary by age, kinship and reproductive status. We examine the effects of different measures of social support on weight and iron nutrition among 677 randomly sampled women from rural Bangladesh. While we find that total support network size mitigates risk for underweight, other results point to a potential tradeoff in the effects of kin proximity, with nearby adult children associated with both lower risk for underweight and obesity and higher risk for iron deficiency and anaemia. Social support from kin may then enhance energy balance but not diet quality. Results also suggest that a woman's network of caregivers might reflect their greater need for help, as those who received more help with childcare and housework had worse iron nutrition. Overall, although some findings support the hypothesis that social support can be protective, others emphasize that social relationships often have neutral or negative effects, illustrating the kinds of tradeoffs expected from an evolutionary perspective. The complexities of these effects deserve attention in future work, particularly within public health, where what is defined as 'social support' is often assumed to be positive. This article is part of the theme issue 'Multidisciplinary perspectives on social support and maternal-child health'.

Empowering the caregiver network of farmers with a disability: A case study of the North Carolina AgrAbility project

A majority of farmers with a disability rely heavily on caregivers to ensure they can fulfill their daily roles and responsibilities. Family members, such as spouses, parents, siblings, and children, are the most common caregivers. However, little is known about the resources and support needed to ensure these individuals can successfully navigate this complex role. In response, the North Carolina AgrAbility Project has provided caregivers with education, resources, and support so that these individuals can better assist farmers with a disability to minimize the job-related obstacles they face. In the current study, we sought to examine how caregivers of farmers with a disability have been empowered through the North Carolina AgrAbility Project. When viewed through the lens of Zimmerman’s empowerment theory, four themes emerged (a) barriers to empowerment; (b) intrapersonal empowerment; (c) interactional empowerment; and (d) behavioral empowerment. Consequently, findings from this investigation documented that caregivers navigated key barriers to become empowered after receiving assistance from the North Carolina AgrAbility Project. Further, their experiences in AgrAbility changed how they approached supporting farmers with a disability. In response, we provide recommendations for better supporting and leveraging the caregiver network of farmers with a disability.

Consider the context: An analysis of personal social networks of caregivers of children participating in a paediatric weight management program.

Social networks influence the health and well-being of children and families. This study aimed to identify and understand the social networks of caregivers of children participating in the KidFit Health and Wellness Clinic, a paediatric weight management program. An egocentric social network analysis was used. Caregivers with children enrolled in KidFit participated in semi-structured interviews by completing a personal network map and discussing the individuals in their social networks and their influence on them and their family. Twenty-two caregivers (90.9% mothers) completed the interview. Four structural patterns were identified within the networks: existence of a core, star-shaped network, well-connected network and existence of multiple clusters. Healthcare providers and family had the most influence within the caregivers' networks. With the exception of healthcare providers, individuals who communicated less frequently with caregivers tended to have less influence on caregivers. Internet resources, activity-related resources and social media were the top three services, resources or supports that caregivers reported accessing. It is important that practitioners working with children and families within paediatric settings recognize the unique sociocultural context of each family. Reconceptualising a care model that includes community and incorporates services, supports and resources beyond the clinic could enhance treatment.

Mother brain is wired for social moments.

Reorganization of the maternal brain upon childbirth triggers the species-typical maternal social behavior. These brief social moments carry profound effects on the infant's brain and likely have a distinct signature in the maternal brain. Utilizing a double-blind, within-subject oxytocin/placebo administration crossover design, mothers' brain was imaged twice using fMRI while observing three naturalistic maternal-infant contexts in the home ecology; 'unavailable', 'unresponsive', and 'social', when mothers engaged in synchronous peek-a-boo play. The social condition elicited greater neural response across the human caregiving network, including amygdala, VTA, hippocampus, insula, ACC, and temporal cortex. Oxytocin impacted neural response primarily to the social condition and attenuated differences between social and non-social stimuli. Greater temporal consistency emerged in the 'social' condition across the two imaging sessions, particularly in insula, amygdala, and TP. Findings describe how mother's brain varies by caregiving experiences and gives salience to moments of social synchrony that support infant development and brain maturation.

Stress and Support in Family and Non-Family Relationships Within Hospice Cancer Survivor Social Networks (SCI954)

1.Identify 2-3 of hospice cancer caregivers’ patterns of informal social networks that contribute to stress and/or support.2.Describe and evaluate 2-3 factors associated with patterns of stress and support. Effective social support mitigates burden and distress experienced by cancer caregivers. Little research, however, investigates informal support within social networks of family caregivers of cancer home hospice patients, and how social stress may accompany this support. We assessed patterns of support and stress within the social networks identified by family caregivers of cancer home hospice patients (N=90). We analyzed secondary data from a longitudinal multi-site study. Participants completed baseline measures including demographics (age, gender, race/ethnicity, marital status, employment, relationship to patient, length of caregiving) and self-report measures on caregiving (Rewards of Caregiving Scale, Caregiver Competence Scale, and Zarit Caregiving Burden Interview), overall mental and physical health, and perceived support and stress including the Duke Social Support and Stress Scale. Participants independently rated perceived levels of support and stress for up to six family members and four non-family members. Latent class analysis identified patterns in reported relationships, stress, and support, and. We then compared between-class differences in demographics and evaluated perceived health and caregiving burden. Three types of social networks were identified: supportive (high support, low stress across family/non-family network), ambivalent maximizers (high support, high stress across family/non-family network), and family-focused ambivalent (high support, high stress across family network only). Groups differed by ethnicity, employment status, relationship to patient, and caregiving burden (p<0.05). Social support is nuanced and may coexist with stress within the relationships and networks of hospice family caregivers. A better understanding of caregivers’ social networks and the support and stress associated with those relationships can inform how hospice providers facilitate meeting caregivers’ needs within these informal networks.

Typologies of Dementia Caregiver Support Networks: A Pilot Study.

There are nearly 18 million family caregivers in the United States assisting an older adult in need of help. Identifying the caregivers in greatest need of support requires an understanding of the current social support networks available to family caregivers and whether specific groups of caregivers are at risk of having an insufficient support network. We collected personal network data from a nationally representative sample of 66 family caregivers to persons with dementia (PWDs) in the United States aged 18 and older, including information on network members' support to the caregiver and help to the care recipient. We found four common caregiving network types: large networks with many helpers; large networks primarily supporting caregivers; small, dense networks supporting both caregivers and care recipient; and small networks providing little help to either caregiver or care recipient. Gender, income, and geographic proximity of caregiver to the care recipient were significantly associated with caregiver network type. This study suggests that there are different types of care and support networks available to caregivers to PWDs, and that the size and structure of networks vary considerably among demographic groups. As the population ages, a better understanding of the supports available to caregivers will be crucial for ensuring that caregivers are adequately supported, and caregiving needs of families are met.

CaregiverMatcher: graph neural networks for connecting caregivers of rare disease patients

Rare diseases affect a growing number of individuals. One key problem for patients and their caregivers is the difficulty in reaching experts and associations competent on a particular disease. As a consequence, caregivers, often family members of the patient, learn much about the disease from their own experience. CaregiverMatcher is a proof of concept providing a smart solution to build a network of caregivers, linked by a matching mechanism based on graph neural networks. The caregivers and their experience with rare diseases are described by node features. Associations and care centers are invited to share their knowledge on the platform.

Neural Mechanisms of Parental Communicative Adjustments in Spoken Language

During cultural transmission, caregivers typically adjust their form of speech according to the presumed characteristics of an infant/child, a phenomenon known as infant/child directed speech (IDS/CDS) or “parentese.” Although ventromedial prefrontal cortex (vmPFC) damage was previously found to be associated with failure in adjusting non-verbal communicative behaviors, little is known about the neural mechanisms of verbal communicative adjustments, such as IDS/CDS. In the current study, 30 healthy mothers with preschool-age children underwent functional magnetic resonance imaging (fMRI) while performing a picture naming task which required them to name an object for either a child or an adult. In the picture naming task, mothers exhibited a longer naming duration in the toward-child condition than the toward-adult control condition. Naming an object for a child, compared with naming it for an adult, resulted in greater involvement in the vmPFC and other regions (e.g., cerebellum) in the global caregiving network. In particular, the vmPFC exhibited task-related deactivation and decreased functional connectivity with the supplementary motor, precentral, postcentral, and supramarginal regions. These findings suggest that the vmPFC, which is included in the default mode network, is involved in optimizing communicative behaviors for the inter-generational transmission of knowledge. This function of the vmPFC may be considered as a prosocial drive to lead to prosocial communicative behaviors depending on the context. This study provides a better understanding of the neural mechanisms involved in communicative adjustments for children and insight into related applied research fields such as parenting, pedagogy, and education.

The Caregiver Identity in Context: The Consequences of Identity Threat From Siblings

Although siblings represent central members of the networks of caregivers’ and their parents, there has been limited attention to how siblings affect one another’s well-being during caregiving. In this paper, we draw from theories of identity and stress to examine the impact that siblings have on caregivers’ psychological well-being. Specifically, we employ a mixed-methods approach to explore whether caregivers’ perceptions that their siblings are critical of the care they provide their mother are associated with higher depressive symptoms, as well as the mechanisms underlying this association. Using quantitative data collected from 406 caregivers nested within 230 families as part of the Within-Family Differences Study, we conduct mediation analyses to examine whether perceived sibling criticisms affect caregivers’ depressive symptoms (a) directly, and/or (b) indirectly through sibling tension. We then analyze qualitative data collected from the same caregivers to gain insight into the processes underlying statistical associations. Quantitative analyses revealed that there was no direct relationship between perceived sibling criticisms and depressive symptoms; there was, however, an indirect relationship such that perceived sibling criticisms were associated with greater sibling tension, which in turn was associated with higher depressive symptoms. These quantitative findings were corroborated by qualitative analyses, which demonstrated that, in an effort to maintain their identity as a “good caregiver” despite sibling criticisms, caregivers often employed strategies that may have fueled tension in their sibling relationships. These findings highlight the importance of considering how the sibling networks in which caregivers are embedded shape their psychological well-being.

Using Longitudinal Social Network Analysis to Evaluate a Community-Wide Parenting Intervention

Harsh parenting attitudes and behaviors negatively impact children’s behavior and development, and are linked to heightened levels of violence in children. Parent training programs are effective preventive interventions, but only reach caregivers who attend them. In this study, programs were implemented alongside a community mobilization process, intended to use caregivers’ social networks to disseminate new parenting skills community wide. We used social network analysis to explore whether this intervention, first, increased positive parenting, second, changed social networks of female caregivers (selection), and, third, influenced parenting behavior via connections (socialization), while controlling for psychiatric morbidity, parenting stress, alcohol misuse, and child’s age. “Colored” Afrikaans-speaking female caregivers (N = 235; mean age 35.92 years) in a rural community in South Africa, with children between 1½ and 18 years old, were included in the study; two waves of data were collected (January–April 2016 and June–October 2017). We detected community-wide increases in positive parenting behavior (involvement, supervision, consistent discipline, and reduced corporal punishment). Attending at least one session of a parenting skills training program (n = 51; 21.7%) significantly predicted increases in network centrality (i.e., outdegree and indegree). Caregivers appeared to use similar parenting behavior to other caregivers they were connected to within the network, especially when those others attended a parenting skills training program. Overall, the results suggest that the information in the intervention was spread throughout the community through social interactions with program attendees and the community mobilization process. The results also illustrate the value of social network analysis for ascertaining the processes by which the intervention achieved its impact.

Life history and socioecology of infancy.

Evolution of human maternal investment strategies is hypothesized to be tied to biological constraints and environmental cues. It is likely, however, that the socioecological context in which mothers' decisions are made is equally important. Yet, a lack of studies examining maternal investment from a cross-cultural, holistic approach has hindered our ability to investigate the evolution of maternal investment strategies. Here, we take a systems-level approach to study how human life history characteristics, environments, and socioecology influence maternal investment in their children. We test how infant age and sex, maternal age, parity, and child loss, and the composition of a child's cooperative breeding network are associated with maternal investment across three small-scale (hunter-gatherer, horticultural, and agropastoral), sub-Saharan populations (N = 212). Naturalistic behavioral observations also enable us to illustrate the breadth and depth of the human cooperative breeding system. Results indicate that infant age, maternal age and parity, and an infant's cooperative childcare network are significantly associated with maternal investment, controlling for population. We also find that human allomaternal care is conducted by a range of caregivers, occupying different relational, sex, and age categories. Moreover, investment by allomothers is widely distributed. Our findings illustrate the social context in which children are reared in contemporary small-scale populations, and in which they were likely reared throughout our evolutionary history. The diversity of the caregiving network, coupled with life history characteristics, is predictive of maternal investment strategies, demonstrating the importance of cooperation in the evolution of human ontogeny.

Dementia care-giving from a family network perspective in Germany: A typology.

Sustaining informal care-giving for people living with dementia (PWD) is a common objective of societies worldwide. Families can contribute substantially to the support of care-giving relatives. However, a deeper understanding of the impact of informal care-giving for PWD on family life is needed. Interviewing of multiple family network members-in addition to the primary carer-provides more insight into familial contexts of care-giving. This pilot study aims to explore how informal carers reconcile dementia care-giving and family life from a family network perspective. Therefore, we conducted 14 narrative interviews with family carers from seven care-giving networks in Germany, which we interpreted using the documentary method. The yielded relational typology describes five types of family carers of PWD. These types reflect the way the families deal with dementia care-giving based on the interrelation between relationship quality and the distribution of care-giving tasks within the family. Depending on the constellation of this interrelationship, family carers either experience care as a joint project, as co-operation with external support or within the family, as disappointment or as a predicament without alternatives. Finally, if the care-giving tasks are not shared, or if the distribution is perceived as unequal, relationship break downs can occur, especially in family ties that are already strained. However, joint care-giving and strong ties can also bring the family closer together and enhance care experiences. Care professionals and social workers should be aware of the family network of dementia carers and support the development of a sense of family unity. This can contribute to positive care experiences among family carers and thus increase the maintenance of informal dementia care.

Stakeholders' perspectives on adapting the World Health Organization iSupport for Dementia in Australia.

In Australia, informal caregivers (family, friends and neighbours) play a crucial role in supporting people with dementia to remain at home. Within the community aged care policy, informal caregivers are acknowledged as assisting with managing care. However, they usually receive very limited dementia care education and training to support them in their role. The World Health Organization (WHO) developed iSupport for Dementia, a comprehensive online dementia education and skill training programme, to address the gap in supporting informal caregivers. The aim of the study was to identify stakeholders' perspectives regarding adapting the WHO iSupport for use by informal caregivers of people with dementia in Australia. An interpretive description study design was used. Data were collected in focus groups with informal caregivers and care staff of dementia and aged care service providers conducted in May-July 2018. A thematic analysis was utilised to analyse data and identify findings. In total, 16 informal caregivers and 20 care staff participated in the study. Five themes were identified. First, informal caregivers perceived iSupport as an opportunity to provide an online one-stop shop to meet their education needs and their needs to manage care services. Second, both informal caregivers and care staff believed that an integrated caregiver network moderated by a health professional was much needed to enable informal caregivers to share learning experiences and enhance social support. Third, both informal caregivers and care staff strongly suggested that dementia and aged care service providers had a role to play in promoting the iSupport. Fourth, informal caregivers were concerned about the time commitment to participate in the iSupport programme. Finally, informal caregivers expected the iSupport to be user-friendly. Stakeholders perceived the adaptation of the WHO iSupport in Australia would strengthen informal caregiver education and optimise support for informal caregivers.

Redes personales de apoyo y cuidado informal: ¿diferencias por sexo y territorio? (estudio CUIDAR-SE II)

ObjectiveTo compare the composition and functionality of social support of personal networks of caregivers of Granada and Gipuzkoa (Spain) according to sex and province. MethodCross-sectional study with personal network analysis methodology. A sample of 66 caregivers segmented by sex in each province was selected. We collected variables of composition, functional and relational content in social support of 1,650 personal relationships of the networks studied. The EgoNet software was used for the collection, analysis and graphic representation of the networks. The association of the characteristics of the network with sex (of the caregivers and those who make up their networks) was measured, using Chi-square. The links within the networks were analyzed. ResultsThe networks of caregivers in Granada are more feminized than those in Gipuzkoa. The women of Gipuzkoa have less familiar networks than those of Granada and with a greater number of relationships among the people who support them. They also have more support from men than women in all the tasks analyzed, except in attention to the disease. In both provinces, male caregivers show in their networks more women who help in specific care tasks than men. Only in activities outside the home in Granada there are more men who help than women (76.1% vs. 57%; p=0.026). ConclusionGender differences between provinces can be seen in the composition of the networks and in the way in which men and women receive and offer support in care.