Informal Care Networks Research Articles

More than medical tourism: lessons from Indonesia and Malaysia on South–South intra-regional medical travel

While scholars increasingly acknowledge that most contemporary international medical travel comprises South–South flows, these have gone curiously unexamined. Rather, policy, scholarly and media attention focuses predominantly on North–South flows of ‘medical tourists’. However, this focus diverts attention from the actual and potential impacts of South–South intra-regional medical travel flows on both their source and receiving contexts. As such, we present findings from a study examining South–South intra-regional medical travellers' motivations, preparations and practices to better understand the social, economic and political situations that condition them and their effects on the destinations that receive them. Our study of Indonesian medical travellers pursuing health care in Malaysia draws on 35 semi-structured interviews with Indonesian patients, their companions, medical staff and agents in both countries. From this, we suggest that South–South medical travellers' diverse socio-economic conditions shape decision-making and spending behaviour relative to treatment, accommodation and transport choices as well as length of stay. We identify ways in which informal economies and social care networks sustain the formal medical travel industry. Finally, we observe how medical travel increasingly serves as a means through which chronic and everyday health needs are met through temporary, visa-free intra-regional movement.

Nature's Civil War: common soldiers and the environment in 1862 Virginia

In the Shenandoah Valley and Peninsula Campaigns of 1862, Union and Confederate soldiers faced unfamiliar and harsh environmental conditions - strange terrain, tainted water, swarms of flies and mosquitoes, interminable rain and snow storms, and oppressive heat - which contributed to escalating disease and diminished morale. Using soldiers' letters, diaries, and memoirs, plus a wealth of additional personal accounts, medical sources, newspapers, and government documents, Kathryn Shively Meier reveals how these soldiers strove to maintain their physical and mental health by combating their deadliest enemy - nature. Meier explores how soldiers forged informal networks of health care based on prewar civilian experience and adopted a universal set of self-care habits, including boiling water, altering camp terrain, eradicating insects, supplementing their diets with fruits and vegetables, constructing protective shelters, and most controversially, straggling. In order to improve their health, soldiers periodically had to adjust their ideas of manliness, class values, and race to the circumstances at hand. While self-care often proved superior to relying upon the inchoate military medical infrastructure, commanders chastised soldiers for testing army discipline, ultimately redrawing the boundaries of informal health care.

Unmet Assistance Need Among Older American Indians: The Native Elder Care Study.

We examined the prevalence and correlates of unmet assistance need with respect to activities of daily living (ADLs) and instrumental activities of daily living (IADLs) among older American Indians. Data for our analyses were collected in 2006-2008 as part of the Native Elder Care Study, a cross-sectional study of community-dwelling American Indians aged ≥55 years. In-person interviewer-administered surveys were used to collect data on demographic characteristics, physical functioning, mental and physical health, personal assistance needs, and psychosocial resources. Among those with an assistance need, 47.8% reported an unmet need with one or more ADLs or IADLs. Significant adjusted correlates of unmet assistance need included greater number of ADL and IADL difficulties and lower levels of social support. Initiatives and programs aimed at increasing social support and augmenting informal care networks can support efforts to meet American Indian adults' personal assistance needs.

Working together–apart: Exploring the relationships between formal and informal care networks for people dying at home

IntroductionInformal caring networks contribute significantly to end-of-life (EOL) care in the community. However, to ensure that these networks are sustainable, and unpaid carers are not exploited, primary carers need permission and practical assistance to gather networks together and negotiate the help they need. Our aim in this study was to develop an understanding of how formal and informal carers work together when care is being provided in a dying person's home. We were particularly interested in formal providers’ perceptions and knowledge of informal networks of care and in identifying barriers to the networks working together.MethodsQualitative methods, informed by an interpretive approach, were used. In February-July 2012, 10 focus groups were conducted in urban, regional, and rural Australia comprising 88 participants.FindingsOur findings show that formal providers are aware, and supportive, of the vital role informal networks play in the care of the dying at home. A number of barriers to formal and informal networks working together more effectively were identified. In particular, we found that the Australian policy of health-promoting palliative is not substantially translating to practice.ConclusionCombinations of formal and informal caring networks are essential to support people and their primary carers. Formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. Further re-orientation towards a health-promoting palliative care and community capacity building approach is suggested.

First Nations Teenaged Female Lone Parent Families in Canada: Recognizing Family Diversity and the Importance of Networks of Care

Using semi-custom data tabulations from the 2006 Census of Population, this article provides a brief statistical description of the socio-economic conditions of female First Nations teenaged lone parents aged 15 to 19 years in Canada. It examines existing formal and informal social and economic support systems available to First Nations lone mother families in multiple family households. These support systems where compared to First Nations lone mothers in single family households as a way to shed light on the varying degrees that informal networks of care may be available to First Nations lone mothers living on reserve, as compared to those living off reserve, who access varying degrees of support from extended family members for the care and nurturing of their children. Despite the dominant Westernized view of the negative impacts that teenaged lone parenting can have on women and their children, this article illustrates that there seems to be a culturally interrelated system, or “networks of care,” available to these women. Such networks of care often have been overlooked in research on lone parenting. There remains much diversity among Aboriginal lone parent families when one accounts for factors such as age of the parent, number of children, living on or off reserve, education, employment, and income. Therefore, the assumption that the social and economic disadvantage of becoming a teenaged lone parent will result in the same circumstances and place all teenaged lone parents at the same “disadvantage” is not necessarily accurate, at least in the First Nation context.

Comparing the experiences of rural and urban family caregivers of the terminally ill

There are many challenges in delivering rural health services; this is particularly true for the delivery of palliative care. Previous work has identified consistent themes around end-of-life care, including caregiver burden in providing care, the importance of informal care networks and barriers imposed by geography. Despite these well-known barriers, few studies have explored the experience of palliative care in rural settings. The purpose of the present study was to compare the experiences of rural family caregivers actively providing end-of-life care to the experiences of their urban counterparts. Caregivers' perceived health status, the experience of burden in caregiving, assessment of social supports and the pattern of formal care used by the terminally ill were explored using a consistent and standardized measurement approach. A cross-sectional survey study was conducted with 100 informal caregivers (44 rural, 56 urban) actively providing care to a terminally ill patient recruited from a publicly funded community agency located in northeastern Ontario, Canada. The telephone-based survey included questions assessing: (i) caregiver perceived burden (14-item instrument based on the Caregiver's Burden Scale in End-of-Life Care [CBS-EOLC]); (ii) perceived social support (modified version of the Multidimensional Scale of Perceived Social Support [MSPSS] consisting of 12 items); and (iii) functional status of the care recipient (assessed using the Eastern Collaborative Oncology Group performance scale). Rural and urban caregivers were providing care to recipients with similar functional status; the majority of care recipients were either capable of all self-care or experiencing some limitation in self-care. No group differences were observed for caregiver perceived burden: both rural and urban caregivers reported low levels of burden (CBS-EOLC score of 26.5 [SD=8.1] and 25.0 [SD=9.2], respectively; <em>p</em>=0.41). Urban and rural caregivers also reported similarly high levels of social support (mean MSPSS total score of 4.3 [SD=0.7] and 4.1 [SD=0.8], respectively; <em>p</em>=0.40). Although caregivers across both settings reported using a comparable number of services (rural 4.8 [SD=1.9] vs urban 4.5 [SD=1.8]; <em>p</em>=0.39), the types of services used differed. Rural caregivers reported greater use of family physicians (65.1% vs 40.7%; <em>p</em>=0.02), emergency room visits (31.8% vs 13.0%; <em>p</em>=0.02) and pharmacy services (95.3% vs 70.4%; <em>p</em>=0.002), while urban caregivers reported greater use of caregiver respite services (29.6% vs 11.6%; <em>p</em>=0.03). Through the use of standardized tools, this study explored the experiences of rural informal family caregivers providing palliative care in contrast to the experiences of their urban counterparts. The results of the present study suggest that while there are commonalities to the caregiving experience regardless of setting, key differences also exist. Thus, location is a factor to be considered when implementing palliative care programs and services.

Bringing our dying home: How caring for someone at end of life builds social capital and develops compassionate communities

In this article we discuss the ‘bringing our dying home’ research project which contributes to an understanding of caring at end of life (EOL) as potentially increasing social networks and community capacity. The main aims of the research were to illuminate the quality and effect of informal caring networks that are established, or strengthened, as a result of caring for a person dying at home and to understand how being involved in such a caring network impacts family, friends and the wider community. Using photo voice and network mapping in focus groups and interviews we collected 94 visual and oral narratives of caring and support. We found: people who engaged in acts of resistance to the Western expert-based approach to EOL care; that carers successfully mobilised and negotiated complex webs of relationships; and, that embodied learning about caring contributed to the development of social capital and compassionate communities.

Social Networks in Dubai: Informal Solidarities in an Uncaring State

Dubai is a unique location to interrogate the dynamics of multicultural politics, interracial relations and belonging; with 90 per cent of its population made up of resident foreigners across 150 nationalities. The city-state is typical of the Islamic Gulf states in that it draws labour migrants not with the promise of eventual citizenship and access to the state's resources, but with the trappings of a tax-free lifestyle and opportunity for accelerated capital accumulation. In the absence of government policy that creates a sense of inclusion or community, the emirate is a highly stratified space – divided along lines of gender, race, nationality and class. It has been popularly understood as an uncaring place. By contrast, this paper will show that there exist strong informal networks of care within the emirate. These networks cross, but also rely on, ethnic, national, gender and class categories. Based on fieldwork conducted in the city-state in 2008, this paper discusses working-class solidarities, the role of social workers, charities, migrant organisations and religious groups in providing ‘care’. By examining how urban informality functions within a highly controlled space, this paper concludes that these networks are an integral part of migrants’ city life in the absence of legal and moral obligations of care by the state ensured through formal citizenship.

Informal and formal care infrastructure and perceived need for caregiver training for frail US veterans referred to home and community-based services

To describe the informal care network of US veterans referred to home and community-based services (Homemaker Home Health services, H/HHA, or Home-Based Primary Care, HBPC) at the Durham Veterans Affairs Medical Center (VAMC), including: quantity and types of tasks provided and desired content for caregiver training programs. All primary care patients referred to H/HHA or HBPC during the preceding 3 months were sent questionnaires in May 2007. Additionally, caregivers were sent questionnaires if a patient gave permission. Descriptive statistics and chi-squared tests were performed. On average, patients received 5.6 hours of VA care and 47 hours of informal care per week. 26% of patients (38% of patients with caregiver proxy respondents) and 59% of caregivers indicated the caregiver would be interested in participating in a training program by phone or on-site. Significant barriers to participation existed. The most common barriers were: transportation; no time due to caregiving or work demands; caregiver's own health limitations; and no need. Caregiver training needs to be tailored to overcome barriers to participate. Overcoming these barriers may be possible through in-home phone or internet training outside traditional business hours, and by tailoring training to accommodate limiting health problems among caregivers.

Older people and falls: health status, quality of life, lifestyle, care networks, prevention and views on service use following a recent fall

This study has investigated older people's experiences of a recent fall, its impact on their health, lifestyle, quality of life, care networks, prevention and their views on service use. Falls are common in older people and prevalence increases with age. Falls prevention is a major policy and service initiative. An exploratory, qualitative design involving two time points. A convenience sample of 27 older people from two primary care trusts who had a recent fall. Taped semi structured qualitative interviews were conducted and repeated at follow up to detect change over time and repeat falls. Data were collected on their experience of falls, health, activities of living, lifestyle, quality of life, use of services, prevention of falls, informal care and social networks. Content analysis of transcribed interviews identified key themes. The majority of people fell indoors (n = 23), were repeat fallers (n = 22) with more than half alone when they fell (n = 15). For five people it was their first ever fall. Participants in primary care trust 1 had a higher mean age than those in primary care trust 2 and had more injurious falls (n = 12, mean age 87 years vs. n = 15, mean age 81 years). The majority of non-injurious falls went unreported to formal services. Falls can result in a decline in health status, ability to undertake activities of living, lifestyle and quality of life. Local informal care and support networks are as important as formal care for older people at risk of falls or who have fallen. Access to falls prevention programmes and services is limited for people living in more rural communities. Falls prevention initiatives and services should work with local communities, agencies and informal carers to ensure equitable access and provision of information, resources and care to meet the needs of older people at risk or who have fallen.

A CASE STUDY ON THE CONSTRUCTION OF THE NETWORK FOR CARE SUPPORTING ELDERLY PEOPLE WITH DEMENTIA

The object of main enumeration is TOMONOURA, a port town represents the scene of SETONAIKAI. Furthermore, the aging rate has reached to 38% and solitude elderly people form 5.3% of population (3% of national average). The purpose of this investigation is to solve the structure of the community in TOMONOURA, how the community and the people living in TOMONOURA supporting the elderly people with dementia and the elderly people need requiring care. The results are described below. 1. The area as a community had been continued, can be said that the soil in which the informal care network is made to form had already cultivated. 2. The impossible range on a life extension which does not try not to be and whose defence is possible is sphere which can correspond. 3. The role with a care The results are described below. 1. The area as a community had been continued, can be said that the soil in which the informal care network is made to form had already cultivated. 2. The impossible range on a life extension which does not try not to be and whose defence is possible is sphere which can correspond. 3. The role which a care home as a catalyst of network formation is played. Although was difficult to support a home life of elderly people, The home was concerned with the area through formal care offer, and the role which digs up the cooperation nature which exists in the area potentially also came only by service which it is small-scale provides sure enough. 4.The care network in TOMONOURA has been built by formation interpenetration related. Because care home can play a role effectively, and by regionality's being easy to be continued on the other hand inheriting regionality.

Support networks of older people living in the community

Aim. The aim of the study was to identify the social support networks of older people living in the community in Ireland using Wenger's (1994) network typology. Background. The population of older people in the community is increasing. With increasing age and changes in family circumstances a substantial proportion of older people will require social, psychological and instrumental support. However a lack of adequate social support networks for vulnerable older people can result in poor health, loneliness and isolation. Method. A national, cross-sectional telephone survey of 683 people aged between 65 and 99 years was undertaken using the Practitioner Assessment of Network Type as the basis for identifying social support networks. Results. The results demonstrated that the majority of older people were living in stable and supportive social networks and reported high levels of contact with family, friends and neighbours. However, a significant minority of older people were living in vulnerable networks. Older people in these networks are susceptible to loneliness, isolation and poor emotional and physical health. Conclusion. Through the identification of people in vulnerable networks, nurses working both in the hospital and community setting can ensure that formal support is aimed at providing care to older people who do not have access to informal care networks. Furthermore, the predictive utility of the Practitioner Assessment Network Type (PANT) can enable nurses to identify people at risk of poor social support.

Service innovation: a virtual informal network of care to support a ‘lean’ therapeutic community in a new rural personality disorder service

This article presents a brief overview of service user-led informal networks of care in therapeutic community practice before discussing the design and evolution of a new kind of network in one of the pilot services of the Department of Health National Programme for the Development of Services for People with Personality Disorder (National Institute for Mental Health in England, 2003a). This network employs well-established internet messaging and chat room facilities uniquely structured and moderated to encompass therapeutic community principles and provide equality of access across a huge mixed urban and rural catchment area. Both hardware and software are inexpensive, easily transferable to similar services and could be modified to suit other applications. The success of this system in allowing challenging work to proceed in a much reduced therapeutic community programme may offer the prospect of many more community-based therapeutic communities at the heart of new personality disorder services.

Veterans Affairs research on health information technologies for diabetes self-management support.

Like many patients with diabetes, Department of Veterans Affairs (VA) patients frequently fall short of self-management goals and experience multiple barriers to self-care. Health information technologies (HITs) may provide the tools that patients need to manage their illness under the direction of their primary care team. We describe several ongoing projects focused on HIT resources for self-management in VA. VA researchers are developing HITs that seek to bolster a variety of potential avenues for self-management support, including patients' relationships with other patients, connections with their informal care networks, and communication with their health care teams. Veterans Affairs HIT research projects are developing services that can address the needs of patients with multiple challenges to disease self-care, including multimorbidity, health literacy deficits, and limited treatment access. These services include patient-to-patient interactive voice response (IVR) calling systems, IVR assessments with feedback to informal caregivers, novel information supports for clinical pharmacists based on medication refill data, and enhanced pedometers. Large health care systems such as the VA can play a critical role in developing HITs for diabetes self-care. To be truly effective, these efforts should include a continuum of studies: observational research to identify barriers to self-management, developmental studies (e.g., usability testing), efficacy trials, and implementation studies to evaluate utility in real-world settings. VA HIT researchers partner with operations to promote the dissemination of efficacious services, and such relationships will be critical to move HIT innovations into practice.

From “Shrinks” to “Urban Shamans”: Argentine Immigrants’ Therapeutic Eclecticism in New York City

This article examines Argentine immigrants' reliance on informal networks of care that enable their access to a variety of health providers in New York City (NYC). These providers range from health brokers (doctors known on a personal basis) to urban shamans, including folk healers and fortunetellers of various disciplines. A conceptual framework, based on analysis of social capital categories, is proposed for the examination of immigrants' access to valuable health resources, which are based on relationships of reciprocity and trust among parties. Results revealed immigrants' diverse patterns of health-seeking practices, most importantly their reliance on health brokers, epitomized by Argentine and Latino doctors who provide informal health assistance on the basis of sharing immigrants' social fields and ethnic interests. While mental health providers constitute a health resource shared by Argentines' social webs, urban shamans represent a trigger for the activation of women's emotional support webs. Contrary to the familiar assumption that dense and homogenous networks are more beneficial to their members, this article underscores the advantages of heterogeneous and fluid social webs that connect immigrants to a variety of resources, including referrals to diverse health practitioners.

Is a Home-Care Network Necessary To Access the Medicare Hospice Benefit?

To test whether the presence of an informal or formal care network in the home leads to different hospice utilization patterns near death. To examine how the informal care relationship affects hospice use patterns. Medicare Current Beneficiary Survey (MCBS), 1997-2001. Using logistic regression and ordinary least squares, we examine the association between a person's in-home network of care and the use of Medicare hospice services in the last year of life. We also examine whether the care-dyad relationship is associated with different hospice use patterns. All individuals in the MCBS who lived at home at the time of the interview and who died between 1998 and 2001, 1404 persons. People receiving formal home care had a much higher chance of enrolling in hospice prior to death. Informal care did not influence the likelihood of hospice but was associated with longer use among hospice users. Daughter caregivers increased the likelihood and duration of hospice use whereas sons significantly decreased the likelihood. Because formal care is associated with increased use of hospice, future work should examine whether patients without an in-home network faced access barriers. Caregiver relationships had large effects on length of hospice stays, yet we do not know whether changes moved a patient closer to or further away from their optimum use of the benefit.

Changes in Adult Child Caregiver Networks

Caregiving research has typically relied on cross-sectional data that focus on the primary caregiver. This approach neglects the dynamic and systemic character of caregiver networks. Our analyses addressed changes in adult child care networks over a 2-year period. The study relied on pooled data from Waves 1 through 5 of the Health and Retirement Study. Based on a matrix of specific adult child caregivers across two consecutive time points, we assessed changes in any adult child caregiver as well as in the primary adult child caregiver. More than half of all adult-child care networks, including more than one fourth of primary adult child caregivers, changed between waves. Gender composition of the caregiver network and availability of other adult child caregivers were particularly important for network change, but socioeconomic context, caregiver abilities and resources, and caregiver burden played a role as well. The results underline the need to shift caregiving research toward a dynamic life course and family systems perspective. They also raise concerns about the viability of informal care networks for future smaller birth cohorts and suggest that health care providers need to recognize and address coordination and potential conflicts among care network members.

Psychiatric rehabilitation. An open-network orientation.

To discuss the difficulties encountered in providing rehabilitation to multi-problematic clients, and possible remedies. The principles of psychiatric rehabilitation are outlined in the frame of the bio-psycho-social model and in the light of long-term follow-up studies. The limits of professional services and the importance of natural networks for successful rehabilitation and social adjustment are highlighted. Worker cooperatives and consumer self-help associations seem to successfully complement health and social services in meeting the complex needs of this population. The integration of formal and informal networks of care is a major challenge and a relatively neglected, but important area of interest in contemporary psychiatric rehabilitation.

How Do They Manage? Disabled Elderly Persons in the Community Who Are Not Receiving Medicaid Long-Term Care Services

ABSTRACT Objective: To expand our understanding of how low-income functionally impaired elderly persons are able to remain in the community. Data Sources and Study Setting: In-person and telephone interviews with 25 elderly individuals who applied for but did not enroll in Connecticut's Home Care Program for Elders (CHCPE). All met the state's nursing home level-of-care criteria. Study Design: In-depth discussions with a small, purposefully selected sample of functionally impaired elderly persons in the community. Principle Findings: Many sample members with very high levels of impairment and multiple chronic health conditions remained in the community without CHCPE services because of Medicare home health services combined with extensive levels of informal care. Some sample members, particularly those with more limited informal care networks, did not receive the level of care that they needed. Virtually all were at high risk for medical complications, hospitalizations for acute illnesses, falls, and further loss of functioning. Further, in many cases, informal care networks were overextended, stressed and vulnerable to breakdown. All but a few of those we interviewed were not receiving services through the waiver program for financial reasons. Most met Medicaid's income criteria but had assets that exceeded Medicaid's $2,000 limit. Several were not participating due to concerns about estate recovery. Conclusions: Additional formal help is needed to avoid eventual nursing home placement for many sample members. This could be achieved by expanding the availability of case management services and/or relaxing program financial requirements. Further, efforts to reduce Medicare home health expenditures must recognize the heightened vulnerability of many beneficiaries for potentially costly adverse outcomes.

Lessons Learned from the Medicare Alzheimer Disease Demonstration

The Medicare Alzheimer Disease Demonstration tested a case management and community care benefit for persons with dementia. The demonstration produced statistically but not clinically significant reductions in caregiver burden and depression. It increased access to community-based long-term care services but did not affect the level of services used. It did not reduce informal caregiver hours spent helping people with dementia. It produced statistically significant but not budget-neutral reductions in Medicare expenditures in that the degree of reduction in regular Medicare expenditures was not enough to offset the added demonstration costs. It did not reduce rates of nursing home placement. Informal care networks providing care to demented enrollees were generally able to function effectively, regardless of whether a professional case manager was involved or whether a long-term care benefit was available.