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

3.2.1 Division of responsibilities

The first overarching analytical theme that was formulated to synthesise relevant descriptive subthemes is described as “division of responsibilities.” This theme was discussed in 12 of the 13 included studies. In this section, we focus on what caregivers think about how responsibilities between themselves and professionals should or could be divided.

In five articles, caregivers view care management as their primary responsibility (Ayalon, Halevy-Levin, Ben-Yizhak, & Friedman, 2013; Kirk, 2001; Linderholm & Friedrichsen, 2010; Stephan, Möhler, Renom-Guiteras, & Meyer, 2015; Toscan, Mairs, Hinton, & Stolee, 2012). In the study of Stephan et al. (2015) caregivers of people with dementia appear to be predominantly responsible for obtaining information on available services, organising professional care and transferring information among various healthcare providers. In another study, adult children of hospitalised care recipients portrayed themselves as being “in charge” of the entire caregiving arrangement, including arranging various healthcare providers (Ayalon et al., 2013). Røthing, Malterud, and Frich (2015) state that caregivers feel responsible to initiate increased healthcare services, which they felt should be initiated by health professionals.

Caregivers seem to try to manage care alone or with informal support as long as possible because of a desire to maintain independence, a sense of personal responsibility for caregiving, and pride. Caregivers do not want to be looked upon as passive victims of their role (Wiles, 2003). In Kirk's (2001) study, feelings of obligations and a strong desire to bring their children home even though they are technology-dependent turned out to be key motivating factors in acceptance of responsibility among adult caregivers. Bove, Zakrisson, Midtgaard, Lomborg, and Overgaard (2016) state that caregivers did not want to be deprived of responsibility, but sought support and knowledge of how to handle it correctly.

Other responsibilities that were felt by caregivers were described as dealing with practical and emotional caregiving problems (Egdell, 2013), to advocating for their loved ones (Toscan et al., 2012), physical presence and emotional care (Ayalon et al., 2013) and keeping company (Ryan & Scullion, 2000). Linderholm and Friedrichsen (2010) described that caregivers feel the social responsibility to give the care recipient an impression of security and strength. In this study, caregivers also felt they were responsible for the patient's personal care and, sometimes, even medication. These caregivers helped relatives admitted to primary healthcare or in palliative home care. They felt an unspoken expectation from the care recipient that the caregiver should manage and take care of nursing and administering medication.

We sought to find to what extent caregivers and professionals had the same views on what should or could be the caregivers’ responsibility. In one of the included studies, caregivers and professionals had similar views on the caregivers’ responsibility. Nurses underlined the importance of family visits and upheld the same expectations for emotional care by caregivers: families can give emotional support when they come to see the care recipient. They don't have to do anything else (Ayalon et al., 2013). However, the same study showed different views on caregivers’ responsibilities. Professionals did not discuss the family members’ roles and hardly acknowledged the managerial aspects associated with the care.

According to Andrew et al. (2009) caregivers of people with mental health problems and, to a lesser extent professionals, tend to attribute responsibility for collaboration to the other party. In the study of Ryan and Scullion (2000), families caring for someone in a nursing home perceived that they had more involvement than perceived by professionals. Although caregivers perceived several tasks as shared, professionals believed only a few of these tasks were shared and saw the others as primarily their responsibility (Ryan & Scullion, 2000). According to Bove et al. (2016), caregivers of co-resident people with severe COPD experience an undefined and unpredictable multi-faceted role, with ambiguity about expectations from both their surroundings and health professionals, leading to a feeling of being used and misused and a concern that their strength would eventually run out.

Four studies mentioned that roles and responsibilities between caregivers and professionals are sometimes unclear (Egdell, 2013; Linderholm & Friedrichsen, 2010; Røthing et al., 2015; Toscan et al., 2012). Unclear responsibilities made it difficult for the caregivers to know what was expected of them (Røthing et al., 2015). Linderholm and Friedrichsen (2010) stated that professionals being unclear about what they expected from caregivers led to a feeling of insecurity, and the caregivers felt isolated and vulnerable. Problems with communication and lack of guidance created feelings of frustration (Linderholm & Friedrichsen, 2010). According to Egdell (2013), caregivers have an uncertain role when the person with dementia they support moves into a nursing home and they have to reconcile the different expectations of their capabilities and renegotiate their role. Caregivers sometimes feel professionals have too great an expectation of the caregivers’ capabilities. In one study, uncertainty existed between caregivers of older hip fracture patients and professionals as to who is responsible for initiating communication about care and what the roles of others within the care network were (Toscan et al., 2012).

Two studies underlined the importance of assessing the cultural context in understanding caregivers. Social and cultural assumptions might cause different experiences and can be an explanation of why caregivers do not realise they can use support (Egdell, 2013). Often, caregiving responsibilities and obligations are framed in different ways (Egdell, 2013). Practices reflect social and cultural norms, as well as individual and family biography. Care decisions are situated in a web of social relations and individuals make difficult decisions about how they will balance competing demands. Rapaport, Bellringer, Pinfold, and Huxley (2006) also identified the importance of assessing the cultural context in understanding the caregivers needs. For example, caregivers of people with mental health problems who had a South Asian background felt services did not take account of their individual and cultural needs.

Summarising, caregivers see organising care and transferring information among various stakeholders as their own responsibility. In five of the included studies, caregivers view organising care as their primary responsibility. It seems that caregivers and professionals have different views of caregivers’ responsibilities. Professionals do not always discuss the caregivers’ roles. Sometimes, caregivers perceive that they have more involvement than perceived by professionals. According to caregivers, the division of responsibilities between caregivers and professionals is sometimes unclear. Some studies underline the importance of assessing the cultural context in understanding the collaboration between caregivers and professionals.

3.2.2 Role negotiation

The second overarching analytical theme that was formulated to synthesise relevant descriptive subthemes is “role negotiation.” Eleven of the included studies described information about this theme. In this section, we focus on the context in which role negotiation occurs.

Five articles addressed the negotiation of boundaries of the caring role. In Egdell's (2013) study, caregivers negotiated boundaries of the caring role in different ways by identifying when, where and from whom they expected support. Ideas of responsibility and obligation towards the care recipient were relevant in placing limits on the support they gave. Decisions reflected the legacy of previous relationships and caregiving experiences and may have been influenced by gender assumptions. In addition, some caregivers considered the limits of the support they were prepared to provide, whereas others negotiated whom they could expect to receive assistance from. Some carried the demands of care alone at home because they did not realise that they were entitled to support. Care in the home may be taken for granted. Caregivers may be expected to provide care without the support of professionals or others; those caring for someone in a nursing home have to negotiate their role. Sometimes, there is little negotiation of caregiving tasks among family members, and as a result individuals may provide care because of geographical closeness, gender or because no one else takes responsibility (Egdell, 2013). Kirk (2001) found that boundaries are not static: in response to changing needs, caregiving responsibilities continued to be transferred between caregivers and professionals. The individual caregivers’ preferences and willingness to undertake a given task determines where the boundary is drawn.

Both Linderholm and Friedrichsen (2010) and Kirk (2001) underlined the importance of building a relationship between the caregivers and professionals when it comes to determining boundaries between their responsibilities. When caregivers managed to build a relationship with professionals, they experienced a clear distribution of responsibilities between professionals and themselves and felt involved in the care (Linderholm & Friedrichsen, 2010). The study of Andrew et al. (2009) shows that caregivers conceptualise their relationship with professionals in terms of the professionals’ and their own behaviour, rather than in terms of their mutual interaction. Caregivers in their study seemed broadly aware of the nature of their relationship with professionals, but less aware of the implicit processes via which this relationship had developed (Andrew et al., 2009). As Kirk (2001) described, when caregivers gain more experience in caring and interacting with professionals, they develop clearer views on the appropriate roles for them to take on themselves. In Kirk's study, caregivers were unable to foresee the reality of caring for a technology-dependent child with intensive needs. Appropriateness is judged in terms of whether caregivers felt it was in their child's or family's best interests. However, role boundaries were also determined by professionals’ assessment of caregivers’ ability to cope with caregiving.

Five studies show that sometimes, there is little room for discussion about the division of responsibilities (Egdell, 2013; Kirk, 2001; Linderholm & Friedrichsen, 2010; Ryan & Scullion, 2000; Toscan et al., 2012). For example, Egdell (2013) found that caregivers of people with dementia may not be asked about how, or if, they wish to remain involved in the care of a care recipient once they have moved into a nursing home. In another study, caregiving was described as “an obligation and something beyond discussion, and the participants had a distinct, loyal, ethical, social, and emotional way of talking about this” (Linderholm & Friedrichsen, 2010). Caregivers were sometimes assumed to take on formal care responsibilities. Caregivers often wished they had taken more control over the situation by being more assertive with their request for help and information (Toscan et al., 2012). Kirk (2001) found that it could be difficult for caregivers to counter professional expectations of their roles in the hospital context because of power asymmetries. They felt that parents were able to exercise a greater degree of power in the home than in the hospital environment. However, many caregivers found that being assertive in negotiating roles with professionals was not easy, even in the home (Kirk, 2001).

Six articles reveal other barriers for role negotiation. According to Egdell (2013), some caregivers were unable to make informed choices about the ways in which they provided care or negotiated their care-giving role because they did not know they could ask for formal support or that formal support was available. Sometimes, the communication focused on the care recipient, not the caregivers’ feelings or experiences (Linderholm & Friedrichsen, 2010). According to Kirk (2001), professional expectations and the lack of appropriately skilled professional care were a barrier to role negotiation. In another study, caregivers often felt intimidated or like a burden to the healthcare team when they required information or clarification on a particular aspect of care (Toscan et al., 2012). Toscan et al. (2012) also describe the unease and stress that is sometimes experienced by caregivers as a result of the increased reliance on informal care placed on them by the system.

Ayalon et al. (2013) did not describe barriers to role negotiation, but they did focus on barriers to fulfilling a caregiving role. Caregivers can experience cultural, practical or emotional barriers to fulfilling their caregiving role. Religious and cultural beliefs are identified as the main reason for lack of engagement in nursing care. Provision of physical care by adult children for their parent is sometimes a taboo or obstructed by fear. Practical barriers might be distance to a hospital or preoccupation with attending to daily routines. Past relationships might be emotional obstacles to engagement in care (Ayalon et al., 2013).

Five studies explicitly describe the importance of professional recognition of the caregivers’ role (Kirk, 2001; Linderholm & Friedrichsen, 2010; Rapaport et al., 2006; Røthing et al., 2015; Wiles, 2003). Recognition is viewed to be paramount and a key principle underpinning good information-sharing practice (Rapaport et al., 2006). Wiles (2003) describes the need to be involved and respected in decision-making. Caregivers looking after an elderly person at home find it easier to deal with professionals who are sensitive and responsive to their needs, and treat them with respect. However, four studies also show that professional recognition of the caregivers’ role is not always the case. For example, Bove et al. (2016) found out that caregivers felt powerless and abandoned by professionals. Professionals did not consider the caregivers to be experts or resources, and the caregivers expressed a strong desire to be informed and included in decisions. According to Egdell (2013), it is only when caregivers become part of the care system that their input is taken into account. In the study of Linderholm and Friedrichsen (2010) caregivers felt invisible with a hope of being seen. The professionals were there for the care recipient, but very few asked about the caregivers’ situation. Caregivers sometimes felt underappreciated, and that made them take a step backwards.

Four studies show that support doesn't always meet the caregivers’ needs (Bove et al., 2016; Egdell, 2013; Røthing et al., 2015; Wiles, 2003). The inflexibility of services is often difficult for caregivers. They find that professionals are not able, willing, or allowed to perform what they regard as the most basic or potentially helpful tasks (Wiles, 2003). Bove et al. (2016) found in their study that caregivers experienced no or little support or acknowledgement from professionals. They said that they had to be proactive and forceful if they wanted contact with a professional during the patient's hospitalisation. The experience of being forced to act without knowledge and support was described as stressful and frustrating. According to Røthing et al. (2015), caregivers for persons with Huntington's disease described the need for professionals to understand how the illness of the patient could affect the family. This expectation was not always met.

In summary, it seems that boundaries between formal and informal caregivers’ roles and responsibilities are not static. In response to needs, caregiving responsibilities continue to be transferred between both parties. Ideas of responsibility may be relevant in placing limits on the support informal caregivers give. It seems to be important to build a relationship between the caregiver and professionals: when caregivers manage to build that relationship, they experience a clear distribution of responsibilities.

Multiple studies underline the importance of professional recognition of the caregivers’ role. Caregivers find it easier to deal with professionals who are sensitive to their needs and treat them with respect. However, studies show that sometimes there is little discussion about the division of responsibilities and recognition of the caregivers’ role is definitely not always the case.

3.2.3 Collaboration

The last overarching analytical theme that was formulated to synthesise descriptive subthemes is described as “collaboration.” Collaboration is a subject that came forward in ten of the thirteen included studies. In this section, we focus on facilitators and challenges or barriers for collaboration between formal and informal care.

In eight articles, factors that enhance good collaboration were described (Andrew et al., 2009; Funk & Stajduhar, 2011; Kirk, 2001; Linderholm & Friedrichsen, 2010; Rapaport et al., 2006; Røthing et al., 2015; Stephan et al., 2015; Wiles, 2003). An important facilitator seems to be showing respect to the care recipient and the caregiver, and acknowledging the role and expertise of the caregiver (Funk & Stajduhar, 2011; Rapaport et al., 2006; Stephan et al., 2015; Wiles, 2003). Support or contact should be tailored to the caregivers’ needs (Funk & Stajduhar, 2011; Stephan et al., 2015) and professionals should be sensitive and responsive to those needs (Wiles, 2003). Another important facilitator is found in the skills and attitudes of the professional. They should be open, patient, friendly, honest, approachable, proactive in seeking and maintaining contact with caregivers in order to realise good collaboration (Stephan et al., 2015). Funk and Stajduhar (2011), whose study is about caregivers who cared for a dying family member at home, describe compassionate, sensitive and empathic behaviour as important attributes. According to Andrew et al. (2009), caregivers consider the behaviours and attitudes of professionals to be more central to collaboration than their own.

In two articles, the importance of clear responsibilities is mentioned as a facilitator for good collaboration between formal and informal care (Røthing et al., 2015; Stephan et al., 2015). Linderholm and Friedrichsen (2010) described it the other way around: when caregivers managed to build a relationship with professionals, they experienced a clear distribution of responsibilities. Finally, consistency was described as facilitating good collaboration. A permanent contact person, continuity and long-term knowledge about family circumstances seem important in developing a good relationship between caregivers and professionals (Funk & Stajduhar, 2011; Kirk, 2001; Rapaport et al., 2006; Stephan et al., 2015; Wiles, 2003).

The included studies also showed challenges or barriers for good collaboration between caregivers and professionals. Two articles mentioned problems with communication (e.g. unclear information or miscommunication by the care recipient) as a barrier (Linderholm & Friedrichsen, 2010; Røthing et al., 2015). Wiles (2003), Toscan et al. (2012), Rapaport et al. (2006) and Stephan et al. (2015) wrote about the importance of recognising the caregiver's role. Inconsistency in recognising the most appropriate role of caregivers during transitions could hinder good collaboration (Toscan et al., 2012). When advice of caregivers is not considered, this is a barrier for good collaboration (Stephan et al., 2015).

Rapaport et al. (2006) mention perceptions about caregivers with different cultural backgrounds as a possible barrier, as well as language. Stephan et al. (2015) describe that late contact between caregivers and professionals can be a barrier. Caregivers sometimes have difficulties contacting professionals, primarily due to inner barriers or uncertainties. Finally, inflexible structures and services, as well as time restrictions and a lack of financial compensation, are also described as barriers for collaboration (Stephan et al., 2015).

In summary, acknowledging the role and expertise of the caregiver seems a facilitator of good collaboration between caregivers and professionals. The importance of clear responsibilities is also mentioned. Several attitudes of professionals are described as facilitators, such as being open and honest, proactive and compassionate. Inconsistency in recognising the most appropriate role of caregivers or assuming responsibility by professionals, as well as inflexible structures and services, can be barriers to good collaboration.