Informal Care Providers Research Articles

Traditional and religious healers in the pathway to care for people with mental disorders in Africa: a systematic review and meta-analysis.

In resource-limited contexts in low- and middle-income countries (LMICs), a considerable proportion of individuals seeking care for mental disorders consult traditional and religious healers in their pathway to mental health care. Reports from Africa suggest that early involvement of healers may result in delays in the care pathway; a potential barrier to early identification and intervention. A systematic review was conducted to evaluate the proportion of patients attending formal health services after making first contact for treatment of mental disorders with traditional or religious healers or other informal and formal care providers within published research in Africa. Electronic databases were searched for the period from January 1990 to February 2014. Quality assessment of included studies was conducted the SAQOR tool. Fourteen papers were identified with data on category of first care provider. Utilizing random effects modelling with inverse variance method, the pooled proportion of participants making first contact for treatment of mental disorders with two broadly categorised providers (informal and formal) was 48.1 % (95 % CI 36.4-60.0 %) and 49.2 % (95 % CI 38.0-60.4 %), respectively. The pooled proportion of participants making first contact with specific providers was: traditional healers (17.0 %, 95 % CI 10.9-24.1 %); religious healers (26.2 %, 95 % CI 18.1-35.1 %); general health services (24.3 %, 95 % CI 16.9-32.5 %); and mental health services (13.0 %, 95 % CI 5.1-23.5 %). Substantial regional variation in patterns of first provider choice was evident. Conclusions of this review must be qualified in the light of several limitations. Approximately half of individuals seeking formal health care for mental disorders in Africa, choose traditional and religious healers as their first care provider. Previous reports suggest that this choice is associated with delays in accessing formal mental health services. Strategies to improve pathways to mental health care in Africa must include innovative programmes aimed at fostering collaboration between biomedical mental health services and these key community-based providers.

Level, pattern, and determinants of polypharmacy and inappropriate use of medications by village doctors in a rural area of Bangladesh.

ObjectiveVillage doctors, informal health care providers practicing modern medicine, are dominant health care providers in rural Bangladesh. Given their role, it is important to examine their prescription pattern and inappropriate use of medication.MethodsThese cross-sectional study data were collected through surveys of patients seen by village doctors during 2008 and 2010 at Chakaria, a typical rural area of Bangladesh. Categorization of appropriate, inappropriate, and harmful prescriptions by disease conditions was based on guidelines defined by the World Health Organization (WHO), the United Nations Children’s Fund (UNICEF), and the Government of Bangladesh. Analytical categorization of polypharmacy was defined when five or more medications were prescribed for a patient at a single visit.FindingsA total of 2,587 prescriptions were written by village doctors during the survey periods. Among the prescriptions were appropriate (10%), inappropriate (8%), combination of appropriate and inappropriate (63%), and harmful medications (19%). Village doctors with more than high school education were 53% less likely (odds ratio [OR]: 0.47, 95% confidence interval [CI]: 0.26–0.86) to give polypharmacy prescriptions than those with less than high school education. While exploring determinants of prescribing inappropriate and harmful medications, this study found that polypharmacy prescriptions were six times more likely [OR: 6.00, 95% CI: 3.88–9.29] to have harmful medications than prescriptions with <5 medications.ConclusionVillage doctors’ training and supervision may improve the quality of services and establish accountability for the benefit of the rural population.

A gap in formal long-term care use related to characteristics of caregivers and households, under the public universal system in Japan: 2001–2010

We investigated whether the universal provision of long-term care (LTC) under Japan's public system has equalized its use across households with different socio-economic characteristics, with a special focus on the gender and marital status of primary caregivers, and income. We used repeated cross-sectional data from national household surveys (2001, 2004, 2007, and 2010) and conducted multiple logistic regression analyses to obtain odds ratios of caregiver and household characteristics for service use, adjusting for recipients’ characteristics. The results showed that the patterns of service use have been consistently determined by caregivers’ gender and marital status over the period despite demographic changes among caregivers. The gap in service use first narrowed, then widened again across income levels after the global economic recession. The results indicate that the traditional gender-bound norms and capacity constraints on households’ informal care provision remained influential on decisions over service use, even after the universal provision of formal care. To improve equality of service utilization, the universal LTC system needs to meet diversifying needs of caregivers/recipients and their households, by overcoming barriers related to gender norms and economic disparity.

장애인의 돌봄충족과 돌봄서비스 이용실태 및 결정변인

Recognizing the lack of empirical study that evaluates the influence of social care services on care sufficiency of individuals with disability, we have focused our study on the following research questions: What is the level of care sufficiency for individuals with disability?, What is the profile of care for individuals with disability from both formal and informal providers?, What are the service use conditions and determinants of social care service use?. This study analyzed data of 1204 individuals with disability who needed daily assistance from 5th wave of Korea Welfare Panel Study. Results showed that 50% of the respondents experienced care deficit. 77% of the respondents received no care from informal care providers and 90% from formal care providers. Despite social care services brought by the expansion of socialization of care, the average number of social service use on care was less than 1, which suggests that socialization of care did not significantly contribute to care sufficiency. In addition, for people who are 64 or younger, social care services was substituted by care from informal care providers and for those who are 65 or older, social care services supplemented care from informal care providers.

Rural and remote dementia care challenges and needs: perspectives of formal and informal care providers residing in Saskatchewan, Canada

Rural and remote settings pose particular healthcare and service delivery challenges. Providing appropriate care and support for individuals with dementia and their families living in these communities is especially difficult, and can only be accomplished when the needs of care providers and the context and complexity of care provision are understood. This paper describes formal and informal caregivers' perceptions of the challenges and needs in providing care and support for individuals with dementia living in rural and remote areas of Saskatchewan, Canada. A mixed-methods exploratory approach was used to examine caregivers' needs. This research was a component of a broader process evaluation designed to inform the initial and ongoing development of a community-based participatory research program in rural dementia care, which included the development of the Rural and Remote Memory Clinic (RRMC). Four approaches were used for data collection and analyses: (1) thematic analysis of consultation meetings with rural healthcare providers: documented discussions from consultation meetings that occurred in 2003-2004 with rural physicians and healthcare providers regarding plans for a new RRMC were analysed thematically; (2) telephone and mail questionnaires: consultation meeting participants completed a subsequent telephone or mail questionnaire (2003-2004) that was analysed descriptively; (3) thematic analysis of referral letters to the Rural and Remote Memory Clinic: physician referral letters over a five-year period (2003-2008) were analysed descriptively and thematically; and (4) examination of family caregiver satisfaction: four specific baseline questionnaire questions completed by family caregivers (2007-2010) were analysed descriptively and thematically. Both physician and non-physician healthcare providers identified increased facilities and care programs as needs. Physicians were much more likely than other providers to report available support services for patients and families as adequate. Non-physician providers identified improved services, better coordination of services, travel and travel burden related needs, and staff training and education needs as priorities. Physician needs, as determined via referral letters, included confirmation of diagnosis or treatment, request for further management suggestions, patient or family request, and consultation regarding difficult cases. One-third of informal caregivers expressed not being satisfied with the care received prior to the Rural and Remote Memory Clinic assessment visit, and identified lack of diagnosis and long wait times for services as key issues. Delivering services and providing care and support for individuals with dementia living in rural and remote communities are especially challenging. The need for increased extent of services was a commonality among formal and informal caregivers. Primary care physicians may seek confirmation of their diagnosis or may need assistance when dealing with difficult aspects of care, as identified by referral letters. Differences between the needs identified via referral letters and questionnaire responses of physicians may be a reflection of the rural or remote context of care provision. Informal caregiver needs were more aligned with non-physician healthcare providers with respect to the need for improved access to additional healthcare professionals and services. The findings have implications for regional policy development that addresses human and other resource shortages.

The Mental and Physical Burden of Caregiving

This study evaluates the mental and physical strain experienced by informal caregivers. Econometric problems due to individuals selecting themselves into informal care provision are tackled by using informative and detailed data from the largest sickness fund in Germany and applying propensity score matching techniques. The findings suggest that carers take more psychoactive drugs as well as analgesics and gastrointestinal agents. Thus, informal caregiving appears to be a burdensome task with implications for both mental and physical health.

The caregiving bind: Concealing the demands of informal care can undermine the caregiving identity

Disagreements and misunderstandings between informal caregivers and care-receivers have been widely reported, but the causes are unclear. The present article compares the views of people with acquired brain injury and their main informal caregivers (28 dyads, n = 56). First, we report a quantitative analysis finding that the majority of disagreements were about caregivers' identity. Caregivers saw themselves as less confident, less intelligent, more embarrassed, more independent and more overprotective than care-receivers rated them to be. Caregivers understood the care-receivers' ratings but disagreed with them' Second, we report a qualitative analysis focussing on how caregivers felt themselves to be perceived by significant others. Caregivers felt that the care-receiver, family members, the general public, health services and even friends often have negative views of them. The ‘caregiving bind’ is proposed as a cause of caregivers' negative identity. It arises when caregivers try to protect the care-receiver's identity by concealing the extent of informal care provision, with the unintended consequence of undermining the prospects of the caregiver receiving positive social recognition for the challenging work of caregiving. The caregiving bind has implications for therapy and points to the potential of friends and health services to provide caregivers with positive social recognition.

Solidarity by demand? Exit and voice in international medical travel – The case of Indonesia

Globally, more patients are intentionally travelling abroad as consumers for medical care. However, while scholars have begun to examine international medical travel's (IMT) impacts on the people and places that receive medical travellers, study of its impacts on medical travellers' home contexts has been negligible and largely speculative. While proponents praise IMT's potential to make home health systems more responsive to the needs of market-savvy healthcare consumers, critics identify it as a way to further de-politicise the satisfaction of healthcare needs. This article draws from work on political consumerism, health advocacy and social movements to argue for a reframing of IMT not as a 'one-off' statement about or an event external to struggles over access, rights and recognition within medical travellers' home health systems but rather as one of a range of critical forms of on-going engagement embedded within these struggles. To do this, the limited extant empirical work addressing domestic impacts of IMT is reviewed and a case study of Indonesian medical travel to Malaysia is presented. The case study material draws from 85 interviews undertaken in 2007–08 and 2012 with Indonesian and Malaysian respondents involved in IMT as care recipients, formal and informal care-providers, intermediaries, promoters and policy-makers. Evidence from the review and case study suggests that IMT may effect political and social change within medical travellers' home contexts at micro and macro levels by altering the perspectives, habits, expectations and accountability of, and complicity among, medical travellers, their families, communities, formal and informal intermediaries, and medical providers both within and beyond the container of the nation-state. Impacts are conditioned by the ideological foundations underpinning home political and social systems, the status of a medical traveller's ailment or therapy, and the existence of organised support for recognition and management of these in the home context.

Employment in Long-Term Care. Report on Poland

The report discusses the formal long-term care workforce in Poland. It presents past and future trends in the development of LTC employment. Authors collected scattered statistical information, estimated lacking data and projected future growth in the number of employed in care services. Performed analysis includes employment in the health and social sector and across various types of care. Projections of the demand for care and supply of the LTC workforce base on the demographic prognosis of the population size and changes in the age structure taking into account different scenarios for demographic development. Results show the growing gap between demand and supply in the LTC employment. The policy towards aging in Poland will must take up the challenge of growing care needs, family changes and lower opportunities for provision of informal care.

Care seeking in tuberculosis: results from a countrywide cluster randomised survey in Bangladesh

ObjectivesTo explore systematically the care seeking trajectories of tuberculosis (TB) cases up to four subsequent places of care and to assess the type of services provided at each place.MethodsTB cases...

The role of life experience in long-term care insurance decisions

This study uses data from a unique survey of the retirement planning behaviors of late middle-aged individuals living in New York State, to test hypotheses regarding the role of earlier life experiences on the demand for long-term care insurance. Our primary focus is on previous provision of informal long-term care, which some studies have found to be correlated with demand for long-term care insurance. We add to the literature by providing a test for causal relationships between previous care-giving and insurance demand, and by exploring the more generally the mechanisms through which previous life experiences are linked to insurance demand. Results are robust to a variety of empirical specifications and estimation methods, including consideration of current care-giving roles and endogenous selection into previous care-giving, and strongly support a causal relationship between previous long-term care-giving and demand for insurance. Our estimates also provide evidence that lifetime health trajectories and family relationships are associated with long-term care insurance demand, and suggest that both emotional and informational forces influence demand.

Complex Lives: Resiliency of African American Women with HIV/AIDS Serving as Informal Kinship Care Providers

Using the resiliency model as a framework, this qualitative description study was designed to elicit the experiences of African American women living with HIV/AIDS serving as informal kinship care providers. Themes emerging from the interviews included (a) strengths of informal social supports, (b) benefits of living with HIV as opposed to women who are not HIV positive, and (c) negative experiences of child welfare services. Findings suggest a plethora of resources women accessed through community-based agencies because of their HIV/AIDS status, as opposed to child welfare agencies.

Intergenerational solidarity: An investigation of attitudes towards the responsibility for formal and informal elder care in Australia

This paper sets out to explore the Australian instance of a significant international problem: Intergenerational solidarity and the willingness of younger generations to support the future care of older people. It draws on Bengston’s intergenerational solidarity theory, in particular his conception of normative solidarity relative to filial obligations, to analyse data from the Australian Survey of Social Attitudes. This data demonstrates evidence of intergenerational solidarity at the policy level and a need for a continued role for government in the provision of residential care, insurance schemes, and the payment of income to full time and occasional carers. At the family level there is less support for the role of adult children in the payment of formal care or the provision of informal care. There is also a significant difference between men and women concerning the direct provision of informal care to ageing parents. Suggestions for future research are highlighted.

The Influence of Spouse Ability to Provide Informal Care on Long-Term Care Use

Objective: Informal care substitutes for or postpones formal long-term care (LTC) use, especially in the Netherlands, where informal care supply affects eligibility for public LTC. The effect of potential informal care supply within the household has received less attention. We examine the role of spouse’s physical ability to provide informal care in explaining LTC use and transitions.Method: We used Dutch respondents from waves 1 and 2 of the Survey of Health, Ageing and Retirement in Europe. A mixed multinomial logit regression is used to model the choice between no LTC use, informal LTC use only, and formal LTC use. Transitions into formal care use are modeled with a logit regression.Results: Spouse ability affects LTC use but living alone remains important after controlling for spouse ability. Other important determinants of use are having a child , age, disability and health status. Transitions are explained by informal care supply and changes therein, health and disability and the respondent’s age. Discussion: Spouse ability to provide informal care reduces use of formal LTC, which implies that future compression of morbidity/disability and its impact would lower demand for LTC, directly and through increased spouse ability to provide informal care.

An Exploratory Model to Illustrate the Interrelationship Between HIV, Disability, and Caregiving in Southern Africa

Increased caregiving burden and HIV-related disability have important implications for affected populations and health and social security systems in southern Africa. Based on a review of HIV, caregiving, and disability literature, and of existing disability models, the authors discuss the potential interrelationships between caregiving and disability in the context of HIV. They develop an exploratory model to illustrate these linkages. Co-existing experiences of disability and caregiving burden may lead to a vicious cycle of deteriorating well-being among affected households and place additional strain on social security systems. HIV may exacerbate this cycle at both a micro and a macro level. Research, policy, and practice should aim to provide more effective synergies between rehabilitation, HIV treatment, care and support, and household livelihood interventions. Particular attention should be paid to the ability of social systems to meet the specific needs of informal care providers with disability and their care recipients.

Obstructed Labor in South East Nigeria Revisited: A Multi-Centre Study on Maternal Socio-Demographic and Clinical Correlates

Objective: The objective was to identify the characteristics of women who developed obstructed labor, the facilities where they were managed before the progress of labor became obstructed labor and also identify short term morbidities associated with the condition. This study was necessitated by the burden of obstetric fistula reported in this population previously thought not to have the challenge. Setting: The study was conducted in 3 tertiary centers including the Federal Teaching Hospital Abakaliki, the Ebonyi state University Teaching Hospital and Federal Medical Centre Owerri. Population: This study involved 225 consecutive parturient managed for obstructed labor in 3 tertiary hospitals in southeast Nigeria. Method: This was a retrospective study conducted between January 2004 and December 2008. Results: Most of the women were between 20-34 years old and more than half (55.1%) had only primary or no formal education. About 33% have not delivered before, while about one quarter (26.7%) had 5 or more previous deliveries. Majority (62.7%) were managed in private maternity homes before referral while 27.6% were referred from informal care providers like churches. Most women (55.6%) spent between 24-47 hours in labour before they were referred. Emergency caesarean section was performed in 81.8% of cases while repair of uterine rupture was done in 11.6%. When asked about the place of their last delivery 25.3% reported it was at an informal provider’s facility while 27 (12%) were in private maternities. Conclusion: There is need to eliminate the existence and patronage of informal maternity care providers while strengthening the capacity of private maternity facilities to manage labor in order to reduce the problem of obstructed labor.

Caregiving intensity and retirement status in Canada

A number of OECD countries have implemented policies encouraging longer labour force participation in tandem with policies encouraging informal care provision in the community. To better understand how these policies may affect the available pool of caregivers and labour force participants, we need more evidence about how informal caregiving is related to retirement status and timing. We assessed the association between caregiving intensity and retirement status for individuals aged 55 to 69 using the Canadian 2007 General Social Survey, a cross-sectional survey with 23,404 individuals. We used multinomial logistic regressions to determine whether providing different intensities of informal care (i.e. hours of weekly care) was significantly associated with the likelihood that an individual was fully retired, had retired and returned to work, had never retired and was working part-time or full-time, or was a labour market non-participant. We found that higher intensity caregiving was associated with being fully retired (relative to working full-time) for men and women (relative risk ratios, 2.93 and 2.04, respectively). For women, high intensity caregiving was also associated with working part-time (1.84) and being a labour force non-participant (1.99). Male and female high intensity caregivers were more likely to be retired before age 65. Our results highlight the importance of measuring caregiving intensity and multiple paths to retirement, which are often overlooked in the caregiving and retirement literature. They also indicate that a policy context encouraging both later retirement and more informal care may not be reasonable without flexible work arrangement options.

Screening Utility, Local Perceptions, and Care-seeking for Reported Jaundeesh among Respondents Lacking Signs of Icterus in Rural Bangladesh

In rural Bangladesh, acute viral hepatitis presents a significant burden on the public-health system. As part of the formative work for a large epidemiologic study of hepatitis E in rural Bangladesh, we sought to identify local terms that could be used for population-based screening of acute viral hepatitis. Exploration of the local term jaundeesh for screening utility identified a high burden of reported jaundeesh among individuals without symptoms of icterus. Recognizing that local perceptions of illness may differ from biomedical definitions of disease, we also sought to characterize the perceived aetiology, care-seeking patterns, diagnostic symptoms, and treatments for reported jaundeesh in the absence of icteric symptoms to inform future population-based studies on reported morbidities. We conducted a cross-sectional survey among 1,441 randomly-selected subjects to identify the prevalence of reported jaundeesh and to test the validity of this local term to detect signs of icterus. To characterize the perceived aetiology and care-seeking patterns for jaundeesh among the majority of respondents, we conducted in-depth interviews with 100 respondents who self-reported jaundeesh but lacked clinical signs of icterus. To describe diagnostic symptoms and treatments, in-depth interviews were also performed with 25 kabirajs or traditional faith healers commonly visited for jaundeesh. Of the 1,441 randomly-selected participants, one-fourth (n=361) reported jaundeesh, with only a third (n=122) reporting yellow eyes or skin, representative of icterus; Jaundeesh had a positive predictive value of 34% for detection of yellow eyes or skin. Anicteric patients with reported jaundeesh perceived their illnesses to result from humoral imbalances, most commonly treated by amulets, ritual handwashing, and bathing with herbal medicines. Jaundeesh patients primarily sought folk and spiritual remedies from informal care providers, with only 19% visiting allopathic care providers. Although the local term jaundeesh appeared to have limited epidemiologic utility to screen for acute symptomatic viral hepatitis, this term described a syndrome perceived to occur frequently in this population. Future population-based studies conducting surveillance for acute hepatitis should use caution in the use and interpretation of self-reported jaundeesh. Further study of jaundeesh may provide insight into the appropriate public-health response to this syndrome.

Health and the double burden of full-time work and informal care provision — Evidence from administrative data

We analyze the relationship between health and the double burden of both informal care provision and full-time work using administrative data from the second biggest German sickness fund. We have information on more than 7000 caregivers over a period of three years and apply linear panel data and two-part models. As outcome measures we use detailed information on the prescription of five types of drugs. We find that individuals who provide care and also work full-time have a significantly higher consumption of antidepressant drugs and tranquilizers than those who work only. This is mostly driven by an increase in the extensive margin of drug intake.

Relationship status and depressive symptoms among older co-resident caregivers

Objectives: Informal caregiving has been found to be burdensome and is associated with depression among older caregivers. These outcomes are often accentuated when caregivers and care recipients co-reside. The current study aims to examine whether the status of the relationship between caregiver and care recipient lessens the negative outcomes commonly associated with informal caregiving.Methods: The study focused on the subsample of co-resident caregivers (N = 3280) in the fourth wave of the Survey of Health Ageing and Retirement in Europe, of persons aged 50 or above, collected in 2011. A logged count of depressive symptoms, measured on the EURO-D scale, was hierarchically regressed on relationship status, measured as relationship type and closeness (confidant) controlling for sociodemographic background, health and country.Results: Co-resident caregivers of spouse and children experienced more depressive symptoms than other relationship co-resident caregiving dyads. However, those who cared for a confidant experienced fewer depressive symptoms, independent of the relationship type.Conclusions: The provision of informal care is stressful and results in a heightened experience of depressive symptoms. Nonetheless, the type and closeness of the relationship between the caregiver and the care recipient can lessen caregiver depression. When informal caregivers care for a confidant, the emotional bond may reduce the depressive symptoms.