Informal caregivers’ views on the division of responsibilities between themselves and professionals: A scoping review

This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaboration between informal caregivers and professionals. Professionals are assumed to adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers’ views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informal caregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.     

‘Call me if you need’: Social support experiences under economic and social change

ABSTRACT

Social interactions play an important role in people’s life and people’s health but their scope and intensity tend to decrease with age, challenging social support dynamics and increasing the risk of social isolation and helplessness. In Portugal, policymakers still seem to rely on traditional social relations in eldercare, while contextual changes and trends are redefining family roles and behaviors and defying the established social support structure. In this work, we aim to examine the scope, structure and experiences of the informal social support network available in the country for stroke patients 6 months after their discharge from the acute care unit in the context of a larger study. The results seem to confirm the importance of family as a source of social support and shed light on different bonding experiences with non-kin social groups, such as neighbors and friends. A coordinated care provision, combining formal and informal support is vital and beneficial for patients, their caregivers and the care system.     

Factors related to preference for participation and degree of commitment in community activities among older adults in Japanese depopulated areas

To address the rapid increase in the ageing population, Japan implemented the Long‐Term Care Insurance System (LTCS) in 2000. Additionally, a community‐based integrated community care system was released in 2012. The purpose of these policies was to help older people who need care or support to continue to live their preferred lifestyles in their own communities. According to this paradigm, older residents are themselves considered members of the community caregiving team and expected to participate in volunteer activities to help the neighbourhood. One such activity is social participation including community activities. Many factors influencing social participation have been found in previous literature. However, knowledge of specific factors about community activities is limited, even though these kinds of activities have attracted policy attention. Our study examined factors related to thoughts about community activities among people aged >40 years. We conducted random sampling in two depopulated areas in Japan and used an anonymous mail survey method. Our survey consisted of three parts: social demographics, health and life, and medical/long‐term care. A total of 2,466 individuals participated in the study (response rate 52.2%), whose average age was 64.2 (SD = 10.3) and 46.5% (n = 1,146) were female. Items including talking with neighbours frequently (social demographics), higher self‐rated health (health and life), the need for health consultations and the desire to take care of family members when they need help (medical/long‐term care) were significantly related to both preference for participation and degree of commitment in community activities. To encourage participation in community activities among older citizens, we recommend interventions related to health literacy and family ties.     

Exploring the collaboration between formal and informal care from the professional perspective—A thematic synthesis

In Dutch policy and at the societal level, informal caregivers are ideally seen as essential team members when creating, together with professionals, co‐ordinated support plans for the persons for whom they care. However, collaboration between professionals and informal caregivers is not always effective. This can be explained by the observation that caregivers and professionals have diverse backgrounds and frames of reference regarding providing care. This thematic synthesis sought to examine and understand how professionals experience collaboration with informal caregivers to strengthen the care triad. PubMed, Medline, PsycINFO, Embase, Cochrane/Central and CINAHL were searched systematically until May 2015, using specific key words and inclusion criteria. Twenty‐two articles were used for thematic synthesis. Seven themes revealed different reflections by professionals illustrating the complex, multi‐faceted and dynamic interface of professionals and informal care. Working in collaboration with informal caregivers requires professionals to adopt a different way of functioning. Specific attention should be paid to the informal caregiver, where the focus now is mainly on the client for whom they care. This is difficult to attain due to different restrictions experienced by professionals on policy and individual levels. Specific guidelines and training for the professionals are necessary in the light of the current policy changes in the Netherlands, where an increased emphasis is placed on informal care structures.     

A qualitative exploration of how Canadian informal caregivers in medical tourism use experiential resources to cope with providing transnational care

Canadians travelling abroad for privately arranged surgeries paid for out‐of‐pocket are engaging in what has come to be known as medical tourism. They are often accompanied by friends or family members, who we call caregiver‐companions. Caregiver‐companions provide care in and across a variety of formal and informal settings, such as in hotels, airplanes and at home. This qualitative study examines the experiences of informal caregivers in medical tourism to learn more about the lived experiences or ‘experiential resources’ they draw upon to cope with providing care and avoiding caregiver burden. The care‐giving literature has demonstrated that such burden can negatively impact caregivers’ well‐being. The unique, transnational context of care‐giving in medical tourism and recent growth in popularity of this practice means that there are few supports or resources currently in place to assist informal caregivers. In this article, we report on an analysis that sought to detail how caregiver‐companions draw upon their previous lived experiences to cope with providing transnational care and to minimise or avoid the onset of caregiver burden. We conducted semi‐structured telephone interviews with 20 Canadians who had accompanied their friends or family members abroad for surgery between September 2013 and January 2014. Thematic analysis revealed the ways that participants had developed practical strategies to deal with the challenges they faced in medical tourism. The interviews revealed three important experiential resources drawn upon by participants: (i) previous experiences of international travel; (ii) previous experiences of informal care‐giving; and (iii) dimensions of the existing relationship with the care recipient. Differences in access to and use of these experiential resources related to participants’ perspectives on medical tourism and the outcomes of the trip. By identifying the experiential resources drawn upon by informal caregivers in medical tourism, we can more effectively identify supportive interventions.     

Does informal care impact utilisation of home‐based formal care services among end‐of‐life patients? A decade of evidence from Ontario,Canada

Understanding how informal care impacts formal care utilisation for home‐based end‐of‐life patients is an important policy‐ and practice‐relevant question. This paper aims to assess the relationship between informal and formal home care among home‐based end‐of‐life patients and how this relationship has changed over the last decade and over the end‐of‐life trajectory. We focus on informal care provided by family members or friends, and three types of home‐based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home‐based end‐of‐life care programme in Ontario, Canada from 2005 to 2016, we build a two‐part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home‐based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home‐based end‐of‐life patients. Decision‐makers need to take into account the relationship between informal care and different types of formal services when introducing future policies.     

Beliefs about informal payments in Albania

Informal payments for health care are a growing concern in Albania and other transitional economy countries. Recent international studies have shown that informal payments can have negative effects on health care access, equity and health status by causing people to forgo or delay seeking care, or sell assets to pay for care. Many countries are putting in place reforms meant to reduce informal payments. In order to be successful, such policies need to consider people's attitudes and beliefs about the practice. This study collected data from 222 citizens in Albania regarding intentions, past behaviours, attitudes and beliefs about informal payments. Comparing people who intend to make informal payments with people who do not intend to make payments, the study found differences in attitudes as well as beliefs about the consequences of making informal payments, in perceptions about what others think and in control beliefs, but no difference in moral beliefs or demographic characteristics. People who intend to make informal payments the next time they seek care are more likely to believe they will get faster and better quality care than non-intenders, but also think they must pay to receive any care at all. People who do not intend to make informal payments are more likely to report that they have connections with medical personnel, which may be substituting for informal payments. The study has implications for educational campaigns accompanying policy reforms. Campaigns which focus on anti-corruption messages are unlikely to be effective, as moral beliefs do not appear to influence intention.     

Influence of municipal policy and individual characteristics on the use of informal and formal domestic help in the Netherlands

BackgroundThe responsibility for care and social support in the Netherlands has been decentralized to the municipalities, on the assumption that they are able to organise care and social support more effectively and efficiently. Municipalities are responsible for offering citizens the social support they need. They have policy discretion to decide how and to what extent they encourage and support the use of informal help. This article explored whether the local policy focus on informal or formal help influences the actual take-up of domestic help.MethodsData on 567 physically disabled people who use informal or formal help in the household were linked to local policy data in 167 municipalities. We performed multilevel multinomial regression analyses. Since we expected that local policy will have more influence on people with slight or moderate disabilities, cohabitees and people aged under 75, cross-level interaction terms were included between characteristics of local policy and of individuals.ResultsThe findings reveal differences between municipalities in their policy on support and differences in the use of formal or informal support between municipalities.ConclusionsWe found no relationship between local emphasis on informal help and the use of informal help. Possible explanations: some people have a small social network, people using informal help did not apply for municipality support or even do not know the possibility exists.     

The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire

Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.     

Violence versus gratitude: Courses of recognition in caring situations

Pandemic infection by COVID‐19 could be changing the public image of the nursing profession in Italy. Recently, as in any western country, we were being registered with an increase in the number of violence against healthcare professionals. Nevertheless, due to pandemic in the social media, the nursing profession is remembered for competence, determination, courage, and humanity, and it is continually remercied by people, politicians, and journalists. In this paper, we will conduct a phenomenological argument that proposes both phenomena can be explained by Paul Ricoeur's courses of recognition. In cases of violence, patients and their family members reacting because they feel betrayed for a real or alleged injustice—primarily not to be listened to by health professionals. Nurses and other professionals are often unable to take the right grade of involvement for understanding patient's needs. On the other hand, during COVID‐19 pandemic, patients and family members perceive the extraordinary daily work of caring, and they react thanking. The principle of the gift is implicated in both cases: the crisis of gift received or donated can be explaining violence; gratitude and thanks can be explaining by gratuitousness of care.     

Life in Government Care: The Connection of Youth to Family

The purpose of this paper is to examine the family attachments of youth who have lived in foster care. Though young people are the primary recipients of services in the child welfare system, their voices are seldom heard both in research and their own plans of care. Data was gathered through a questionnaire distributed to youth aged 17–24 years. Youth named siblings more frequently than any other family member with whom they now have contact, and identified their birth family as their primary object of attachment, despite the birth family being identified the least often as those to whom the youth turn when they are sick or who they talk to about their feelings. Youth who lived in many foster homes stated they do not feel part of any family. Many youth stated that they did not feel listened to by their social workers. Support for co-operative relationships between foster parents and birth parents and alternate dispute resolution are discussed as ways of preventing young people from severing their vital family connections. This article documents a research project about how the experiences of youth’ in government care, including both foster care and group home care, affect their sense of belonging and connection to “family”. It reports findings that show that as the number of foster placements increase the “feeling of being part of a family” diminishes among youth. The research participants, twenty youth aged 17–23 years, most often identify siblings as family members with whom they still have contact, and the birth family is considered to be their most salient attachment. Many youth state that they did not feel listened to or understood by their social workers. Recommendations for social policy and child and youth care practice are discussed.     

Informal caregiving for frail older people at home and in long-term care institutions: who are the key supporters?

This paper describes the extent of the informal caregiving unit for older people who are physically or mentally frail living in private households or resident in long-term care institutions using cross-sectional analysis of survey data. A total of 1444 people aged 65 years or more registered with a general practitioner (GP) in four areas in England and, consenting to the study, were screened for mental or physical frailty. Of 1127 older subjects living at home 7% reported receiving no informal support, 15% had a paid supporter only and 78% nominated a key informal supporter who helped with defined activities of daily living of whom 650 (74%) were interviewed. Only 13% nominated more than one informal supporter. Key supporters were spouses (38%), daughters (30%), sons (9%), daughters-in-law (4%), other relatives (11%) and friends and neighbours (8%). Of 317 frail older people resident in long-term care institutions 175 (55%) received a main visitor at least once a week of whom 132 (75%) were interviewed. Main visitors were spouses (11%), daughters (36%), sons (23%), daughters-in-law (2%), other relatives (24%) and friends (4%). Qureshi & Walker's (1989) hierarchical, decision-making model for selecting informal caregivers was applied to the data and correctly identified 85% of key informal supporters and 79% of main visitors interviewed. This large-scale comprehensive survey of informal care for frail older people supports earlier small-scale localized studies highlighting the key role of spouses and daughters in the provision of informal support. Families of frail older people provide the support to maintain people at home.     

The integration of citizens into a science/policy network in genetics: governance arrangements and asymmetry in expertise

Objectives While there are increasing calls for public input into health research and policy, the actual obtaining of such input faces many challenges in practice. This article examines how a Canadian science/policy network in the field of genetics integrated citizens into its structure and then managed their participation. Methods Our ethnographic case study covers a 5‐year period (2003–08) and combines four data sources: observations of the network’s meetings and informal activities, debriefing sessions with the network’s leaders, semi‐structured interviews with network members (n = 20) and document analysis. Results When setting up the network, the leaders wanted to include a range of perspectives (research, clinical and policy) to increase the relevance of their research production and knowledge‐transfer activities. After 2 years of operation, the network’s members agreed to also include citizens who were not knowledgeable in genetics and policy issues. As neither the structure nor the dynamics of the network were modified, the citizens very soon started to feel uncomfortable with their role. They doubted the relevance of their contribution, pointing to an asymmetry in knowledge between them and the expert members. There were significant tensions in the network’s governance and the citizens’ concerns during the process were not fully addressed. Conclusion The integration of citizens into transdisciplinary networks requires recognizing and addressing the asymmetry of expertise that underpins such a collaborative endeavour. It also requires understanding that citizens may feel uncomfortable adopting the pre‐defined role ascribed to them, may need a space of their own or may even withdraw if they feel being used.     

The gap between macroeconomic and microeconomic health resources allocation decisions: The case of nurses

The allocation of healthcare resources takes place at two distinct levels. At the macroeconomic level, policymakers decide on budgets, staffing, cost‐effectiveness thresholds, clinical guidelines and insurance payments; at the microeconomic level, healthcare professionals decide on whom to treat, what the appropriate treatment is, how much time and effort should each patient receive and how urgent the need for care is. At both levels, there is a constant social need for just allocation. Policymakers are mostly guided by abstract principles of justice, thinking in terms of groups of patients, epidemiological data, impersonal statistics and economic costs. On the other hand, healthcare professionals understand the need for justice at a more personal level, as they interact with patients and, in a sense, put theory into practice. Nurses hold a unique position in healthcare systems, as, traditionally, they are closer to patients than other health professionals. This means that they have a firsthand view of the effect that their decisions have on specific patients and, therefore, nurses tend to get more influenced by their personal feelings, values and beliefs at the microeconomic level. This presentation shall examine the gap between abstract macroeconomic and concrete microeconomic health resources allocation decisions, with a particular emphasis on the role of the nurse.     

Partnership working by default: district nurses and care home staff providing care for older people

Older people residents in care homes that only offer residential care rely on primary healthcare services for medical and nursing needs. Research has investigated the demands that care homes staff and residents make on general practice, but not the involvement of other members of the primary healthcare team. This paper describes two consecutive studies completed in 2001 and 2003 that involved focus groups and survey methods of enquiry conducted in two settings: an England shire and inner London. The research questions that both studies had in common were (1) What is the contribution of district nursing and other primary care services to care homes that do not have on‐site nursing provision? (2) What strategies promote participation and collaboration between residents, care home staff and NHS primary care nursing staff? and (3) What are the current obstacles and aids to effective partnership working and learning? A total of 74 community‐based nurses and care home managers and staff took part in 10 focus groups, while 124 care home managers (73% of the171 surveyed) and 113 district nurse team leaders (80% of the 142 surveyed) participated in the surveys. Findings from both studies demonstrated that nurses were the most frequent NHS professional visiting care homes. Although care home managers and district nurses believed that they had a good working relationship, they had differing expectations of what the nursing contribution should be and how personal and nursing care were defined. This influenced the range of services that older people had access to and the amount of training and support care home staff received from district nurses and the extent to which they were able to develop collaborative and reciprocal patterns of working. Findings indicate that there is a need for community‐based nursing services to adopt a more strategic approach that ensures older people in care homes can access the services they are entitled to and receive equivalent health care to older people who live in their own homes.     

Informal help in a local setting: The Dutch Social Support Act in practice

The Dutch Social Support Act provides municipal social support for people that experience limitations in daily life and cannot rely on informal help from their social network to compensate these limitations. In this paper, we study whether the probability and intensity (number of services) of receiving municipal social support for daily limitations is affected by informal help by the social network (i.e. family, friends and neighbors).This study took place in Breda, a middle large city in the South of the Netherlands. We combined data from the Municipal Personal Records Database, the registration containing information on demographics and municipal social support receipt of all inhabitants, with data from the Municipality Policy Monitor, a survey containing information on daily limitations and informal help (n = 5256).We find that people experiencing daily limitations are more likely to receive municipal social support and also receive a higher number of support services (intensity). However, the perceived help from family and friends does not decrease either the probability or intensity of receiving municipal social support. Informal help from neighbors decreased the likelihood of receiving of municipal social support, but not the intensity. This implies that the overall relation between daily limitations and municipal social support is not different for people who indicate that they can or cannot rely on their informal network for help.     

The experiences of neighbour,volunteer and professional support‐givers in supporting community dwelling older people

Public policy increasingly emphasises the importance of informal support networks to meet the needs of the ageing population. Evidence for the types of support neighbours provide to older people and how neighbours collaborate with formal support‐givers is currently insufficient. Our study therefore explored (i) types of informal neighbour support and (ii) experiences of neighbours, volunteers and professionals providing support. Interviews with nine Dutch neighbour support‐givers, five volunteers and 12 professionals were conducted and subjected to latent content analysis. Findings indicate that commitment occurred naturally among neighbours; along with providing instrumental and emotional support, neighbour support seems to be a matter of carefully ‘watching over each other’. Neighbour support‐givers, however, are often frail themselves and become overburdened; they furthermore lack support from professionals. Neighbour, volunteer and professional support‐givers seem to operate in distinct, non‐collaborative spheres. Findings suggest that policy‐makers should consider the opportunities and limitations of neighbour and volunteer support. Professionals have an indispensable role in providing back‐up and accountable, specialised support. They may be trained to adopt a visible and proactive attitude in neighbourhoods to facilitate, cooperate with and mediate between neighbour and volunteer support‐givers.     

Determinants of informal care-giving in various social relationships in the Netherlands

This study investigates determinants for offering help to family members, neighbours and friends, based on the Informal Care Model. We do so in pooled representative data for the Netherlands collected in 2014 and 2016 (persons >17 years, n = 13,165). One-third provides informal care to a person with health problems or impairments: partners (4%, n = 671), parents or children (16%, n = 2,381), distant relatives (6%, n = 858), friends or neighbours (6%, n = 839). Marginal effects show differences in the associations of care-giving relationships with sociodemographic factors, barriers and beliefs. Helping a partner is related to age, gender (older people and men are more likely to help) and household composition (singles help less often). Care for close family is given often by 45–64 year olds, women, multiperson households and those with strong family beliefs. Helping second-degree relatives correlates with age (young people help more often), barriers (those living with children help less often) and beliefs (people with professional background in care and people who attend church or mosque helping more often). Providing non-kin care is associated with age and education level (young people less likely to help, people with a high education more likely), barriers (having a fulltime job) and beliefs (work experience in care, church or mosque attendance and norms). The supply of care to partners and close family is mainly associated with sociodemographic factors and barriers while the provision of care to distant family and non-kin is also correlated with beliefs. If desirable policy is to create more informal care, investment in the combination of work and informal care, childcare and supportive arrangements for older community living couples is recommended. It also might be worthwhile to enhance beliefs about the usefulness of helping each other in times of need.