Family quality of life after brain injuries: a qualitative study on the perspectives of family members

When someone has a brain injury (e.g., strokes or traumatic injuries), families change their lives to support the person with brain injury. Some families may face challenges, so it is necessary to have interventions that address the needs and goals of all family members. In this study, we conducted meetings with people with brain injuries, family members who are the main caregiver and family members who are not the main caregiver. We wanted to know what family quality of life is for families of people with brain injuries. Aspects related to family well-being were summarized in 5 topics: (1) the well-being of each of its members, (2) the relationships between family members, (3) the family resources, (4) the relationships with people outside family, and (5) the resources for families in their community. This allows us to assess and create interventions aimed at helping families after brain injuries, adjusting to the well-being of each of the family members.

Acquired brain injury (ABI), including traumatic and non-traumatic brain injuries (e.g., strokes, hypoxias, brain tumors, or infections), is one of the leading causes of adult disability in Europe [1]. As a result, survivors may experience a broad range of long-lasting disabilities [2‐4]. In Spain, the care provided to people with ABI is characterized by significant territorial fragmentation, leading to inequalities in access to rehabilitation and support services. Publicly funded rehabilitation is available during the acute phase within the healthcare system, while resources for the subacute and chronic phases are limited. In many cases, people with ABI and their families must rely on private services or support from family organizations, which can create financial and accessibility barriers [5].

In this scenario, families may try to adjust to the new situation to meet survivors’ needs. In this process, significant levels of anxiety, depression, health concerns, social isolation, or reduced levels of overall health-related quality of life have been described [6‐11]. However, positive outcomes have also been identified, such as feeling appreciated, increased self-esteem and positive feelings [12, 13].

Most of the studies on the impact of ABI focus on primary caregivers, but its consequences likely affect the entire family. Families may face challenges such as poor family functioning [14, 15], relationship breakdowns [16], or financial hardship [17]. However, some studies have identified differences in how family members perceive family life according to their roles within families [18‐20]. Thus, including family members beyond survivors and primary caregivers could provide a more comprehensive understanding of the family’s experiences [21, 22].

Given the complex needs and perspectives of family members after ABI, a family-centered approach has been proposed as the most effective approach in rehabilitation [23‐25]. This model is defined as a coordinated system of community-based services for those with chronic conditions and disabilities, whose main goal is to achieve the maximum level of health and well-being of patients, their families, and communities [26]. However, there is an ongoing discussion about the objectives of this approach and how to integrate them into services. While some authors have focused on satisfaction with care, patients’ health, or caregiver’s health [25], Poston et al. [27] proposed Family Quality of Life (FQoL) as the main family-centered outcome [28], emphasizing the family as the core unit of care and the role of family-centered models in enhancing family well-being.

In the FQoL Theory, such a construct is conceptualized as “a dynamic sense of well-being of the family, collectively and subjectively defined, and informed by its members, in which individual and family-level needs interact” [28] (p. 262). It comprises individual and collective needs fulfilment, shared-time enjoyment, and opportunities to achieve their goals [27, 29]. This concept is based on individual quality of life theory, family empowerment and socioecological models of disability [30, 31].

Like on Individual Quality of Life, FQoL is considered a multidimensional construct, defined by interrelated domains which are operationalized through indicators such as perceptions, behaviors and life conditions at micro-, meso-, and macrosystems level, which serve as both factors and outcomes of individuals and families wellbeing ([32, 28]). Several groups have attempted to develop assessment tools which help to identify indicators and measure FQoL. The International Quality of Life Project developed and validated the Family Quality of Life Survey (FQoLS-2006) [33], which assess FQoL across nine domains (i.e., Health of the family, Financial well-being, Family relationships, Support from other people, Support from disability-related services, Influence of values, Careers, Leisure and recreation, and Community interaction). This survey was developed with international experts and validated through pilot testing with families of individuals with intellectual and developmental disabilities (IDD) across several countries [34]. Similarly, the Beach Center Family Quality of Life Scale [35] was created through an extensive work with families of children with IDD, as well as the development and validation of the scale in the USA [27, 36]. Despite their differences, a key feature is the emphasis on the perspective of family members to define which indicators best reflect family well-being, thus recognizing and understanding their experiences.

The FQoL approach to study family members’ desired outcomes may be of interest for comprehensively assessing family well-being and planning family-centered interventions, services and policies [30, 37]. However, few studies have been identified on the FQoL following ABI. Although these studies have tried to understand FQoL from the perspective of primary caregivers [38, 39], they failed to include the whole family system. Therefore, research on the perspectives of the different family members on their FQoL is needed. A study with ABI survivors, primary caregivers (PCs) and non-primary caregivers (NPCs) was conducted to better understand (a) their perspective on FQoL, (b) which indicators represent the FQoL and, (c) whether there are differences between their reflections according to their role. To achieve this aim, qualitative methodology was chosen since it allows to build situated and deep knowledge of social life from the perspective of stakeholders, and it has been proposed as an essential approach to understand people’s experiences of well-being [40].

A two-level coding structure has been generated as a result of the analysis. This structure describes a set of FQoL domains and indicators for this population. Table 4 displays indicators and quotes illustrating themes and subthemes. Also, differences in participants’ accounts according to their role (i.e., survivors, PCs, and NPCs), and subthemes relationships have been identified (see Fig. 1).

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This study attempted to understand FQoL from the perspective of individuals who belonged to families of people with ABI according to their role and to identify indicators suitable for this population. Through a TA of focus groups with family members of adults with ABI, an operational multidimensional model of FQoL has been proposed. This model accounts for five domains of FQoL -namely, individual well-being, family relationships, family resources, community relationships and community resources- with indicators across individual, family and community levels. These domains and indicators are interconnected defining family factors and desired outcomes. Moreover, differences in participants’ accounts about FQoL according to the role they hold within the family (i.e., survivors, PCs, and NPCs) are reported.

One of the core domains identified in the model was individual well-being, where participants emphasized factors such as physical and psychological well-being. Psychological concerns were the most frequently mentioned indicators, aligned with existing literature on desired family outcomes post-ABI [12, 44, 45]. Although studies on the physical consequences of caregiving are also abundant [46], participants spoke about physical well-being mostly related to survivors. This may be because changes in physical well-being post-ABI may be more apparent in survivors. Yet, it is a major concern for all family members [47].

On the other hand, when asked about family well-being, the most frequently described topics were related to family relationships, addressing the exchanges and interactions among family members [34, 36, 48, 49]. Some aspects, such as communication and conflicts or shared time, have been highlighted. However, support within the family, both for the person with ABI and for other family members, was the most described subtheme. These findings differ from those other studies with children with disabilities which incorporate support as a different topic within family roles domains, which entails the ability of families to provide support for people with disabilities [50]. This cannot be fully applicable to adults with disabilities as it may stress the responsibility of caring within the family, which is frequently expected to be taken on female family members. But it also suggests that support is only directed towards people with ABI, which may be inappropriate and patronizing. In this sense, a discussion about mutual support emerged among NPCs and survivors’ groups. This has previously been acknowledged when people with disabilities are included in studies about FQoL [51].

Despite its importance, varying degrees of support and involvement were mentioned as well as its impact on individual well-being, especially when lacking. This has also been reported in previous studies with ABI survivors [15], and is one of the aspects where family members’ perceptions most frequently disagree [19]. In this sense, distribution of care labor within families is linked to better mental and physical health outcomes [52, 53]. Thus, promoting involvement other than PCs and mutual support in the context of family interventions may enhance relationships and, consequently, the emotional well-being of family members.

Another significant aspect of FQoL was family resources, which has been discussed either as material or financial well-being [50]. Like in our study, finances seem to be the main source to fulfill family needs. This is a particularly important issue for this population due to the decreased income post-ABI and the rising expenses related to rehabilitation needs, which may hinder the psychological adaptation of family members as well [17]. Nevertheless, participants also reflected on the usage of these resources when referring to the process by which family resources were adapted to the new family situation. In fact, this aspect has been described by Engel et al. [54], where survivors access, plan, manage and make choices related to their resources. This paper studied the contextual factors that influence financial well-being post injury and how the access to resources was constrained by societal factors, like those described in the community resources domain of this study.

In the case of community relationships, groups particularly discussed interpersonal relationships and support of people beyond family. In this regard, the loss of meaningful bonds was referred to be connected to a reduction of support sources, often resulting in feelings of abandonment and loneliness, especially for survivors and PCs. While this has been a well described topic in the previous ABI literature [55, 56], some participants described situations in which pre-injury relationships remained or new ones were stablished with other survivors and ABI families, which is in line with the findings of Salas et al. [57].

On the other hand, this domain did not only refer to these relationships but also participation in the community in a broader sense. These aspects have previously been highlighted under Community interaction and Support from other people domains [58], which represents how family system interacts with friends, neighbors, and other people within their communities. In this study, participants referred to the importance of activities and performing valued roles outside the family, although withdrawal was frequent due to barriers to participation (e.g., time constraints, physical and cognitive barriers). This suggests that other members beyond survivors may also be indirectly exposed to these barriers. Despite this aspect having previously been described as a desire outcome for family members [59], it remains as a frequently neglected area within family interventions [60]. Thus, incorporating specific strategies to overcome social barriers and enhance connections with the community not only for survivors but for all family members may strengthen the impact of family interventions.

For the last domain, one of the major concerns across all groups about FQoL was the availability of specialized social and healthcare services that adequately meet family members’ needs as in the study of Climent et al. [39]. Also, general community resources were referred by survivors and NPCs. Community resources and, especially, disability-related services have been an important topic across FQoL studies [61]. Additionally, some family members acknowledge the importance for families of using such services as they have faced some challenges navigating social and healthcare systems [62]. Similarly, in the current study, participants reflected upon the need of information about services that helped them to navigate the social and healthcare system, which may be an important aspect not only for survivors’ rehabilitation, but also for all family members’ needs.

This study has identified desired outcomes regarding FQoL by analyzing the perspectives of ABI adult family members according to their role. In this sense, differences have been noted between the current proposal and other models (e.g., [36, 48]). However, quality of life indicators and its importance are thought to be culturally and contextually sensitive [63, 64]. Thus, it is important to emphasize that some indicators may not be applicable to other populations or countries, since the way families relate, their priorities and social and healthcare systems may differ across countries.

Moreover, the findings of this study may be influenced by the sample included. On one hand, some groups (i.e., PC) were mainly composed of female family members. Because differences in the experience of female and male caregivers have been identified [65, 66], some of the described indicators, their importance, or perceived changes are likely to vary for male PCs, especially for roles and responsibilities. This may be similar to the case of the NPCs who participated since they were family members that somehow were involved in caring and supporting survivors, which may differ from family members who don’t take part of family caring tasks.

While we acknowledge these limitations and the differences with other proposals, and therefore the need to explore this structure further, this study can guide FQoL assessment and target interventions aimed at improving family well-being at individual family, health care and family services, and policy levels. Overall, the study findings suggest that FQoL is a multidimensional construct and comprises interconnected indicators within five domains (i.e., individual well-being, family relationships, family resources, community relationships and community resources). Further, FQoL indicators differ according to the role of the family member. While ABI survivors frequently described individual-level indicators, PC and NPCs referred to their relationships with survivors and other family members. In this sense, NPCs were more likely to reflect upon family conditions as a system. These indicators may also vary across contexts, cultures, and family members, stressing the necessity of focusing on the experiences of all relatives. This requires assessment tools that not only gather the perspective of the different members of the family in relation to their well-being, but also integrate them in such a way that the needs of the whole family can be addressed. This can help to understand family members’ needs and how they are linked to develop rehabilitation and family interventions that promote the family well-being by adjusting to these needs.