Wants and needs for involvement experienced by relatives of patients with an acquired brain injury: a scoping review

Abstract

Objective: 

The objective of this scoping review was to identify and map the breadth of available evidence on relatives’ wants and needs for involvement in the care of patients with an acquired brain injury.

Introduction: 

Acquired brain injuries often occur suddenly and unexpectedly. Experiencing an acquired brain injury has major consequences, not only for the patients—due to the devastating impact on their physical, cognitive, social, and psychological well-being—but also for the relatives who may need to take on a lifelong role as a carer. Research has cited some benefits of involving relatives in the care of patients, including positive effects on the patients’ health outcomes; however, there are few studies showing how relatives can be involved.

Inclusion criteria: 

Studies that defined or assessed relatives’ wants and needs for involvement in the care of patients with an acquired brain injury in all settings were included. Studies were included if they described any kind of wants and needs for involvement experienced from the perspective of relatives. The review considered all study designs, except for literature reviews.

Methods: 

The JBI methodology for conducting a scoping review was employed in accordance with an a priori published protocol. An extensive search was conducted in MEDLINE (PubMed), CINAHL (EBSCO), and Embase (Ovid). Gray literature was searched using Grey Matters and BASE. The initial search was conducted in February 2020 and updated in September 2021. This review was limited to studies published in English, German, or Scandinavian languages since January 2010. The data were extracted using a data extraction tool (authors, year of publication, country of origin, setting, study methods, and findings related to wants and needs for involvement) created by the authors. The review findings are reported as a descriptive summary, with tables and figures supporting the data.

Results: 

The search identified 3854 studies, 31 of which were included. The studies were published between 2010 and 2021, and were conducted across 9 countries. In total, 16 studies applied a qualitative study design, 4 studies used a descriptive approach, 4 studies used a quantitative research design, 4 studies reported using a mixed methods design, and 3 studies employed a multi-methods design. The studies were conducted across a variety of settings, ranging from acute care to home. The international literature on the involvement of relatives of patients with acquired brain injuries comprises multiple published studies on different aspects of the topic and within various care contexts. The findings identified few studies describing wants and needs experienced by relatives in relation to involvement in the patient’s disease trajectory.

Conclusions: 

The findings show that relatives’ wants and needs are primarily related to information and communication, but are also related to collaboration with health care professionals. The findings illustrate that the complexity of involvement is comprehensive, with multiple aspects to consider.

Supplemental Digital Content 

SRX_2023_05_02_GULDAGER_JBIES-22-00022_SDC1.pdf

SRX_2023_05_02_GULDAGER_JBIES-22-00022_SDC2.pdf

Introduction

Acquired brain injury (ABI) often occurs unexpectedly and suddenly. ABI is defined as all traumatic and non-traumatic injuries to the brain acquired after birth that are not related to congenital or degenerative diseases.¹ ABIs are most often due to external causes (eg, motor vehicle crashes, violent acts, falls), which are categorized as traumatic brain injuries (TBI); or due to ischemic stroke, intracerebral hemorrhage, or cardiac arrest sequelae. The global incidence of TBI is approximately 369 per 100,000 people,² with an estimated 12.2 million new strokes per year worldwide.³ TBIs occur more frequently in persons between the ages of 15 and 24 years, and at age 75 years and older.⁴ Stroke occurs at all ages, but most commonly past the age of 50 years.⁵

Depending on the location and severity of the ABI, the diagnosis can have major consequences for affected individuals. Patients often experience a broad range of physical, functional, psychological, and emotional sequelae (eg, hemiplegia; communication disorders, such as aphasia; fatigue; swallowing difficulties; apathy; depression; anxiety).⁶ Patients with an ABI are, therefore, often affected in several areas (changes in motor/sensory function, executive functions, personality changes), which impairs their ability to collaborate with health care professionals (HCPs) and participate in decision-making about their treatment, rehabilitation, and future possibilities (eg, return to work).^6,7 The rehabilitation of patients with an ABI differs from other patient groups due to the complexity, and treatment requires a concerted, interdisciplinary effort from HCPs. Collaboration with relatives is particularly important.⁸

In the acute phase of a patient’s ABI, relatives can experience a state of shock. Patients often hover between life and death, and there is a great deal of uncertainty about the prognosis and consequences for the individual and the family’s future.⁹ If the patient survives the acute phase and can be transferred to a rehabilitation department, it often becomes clearer to the relatives what physical and cognitive sequelae the patient has. The relatives may need to take on a lifelong role as informal carer and supporter for the patient, which may negatively affect their quality of life; cause stress, isolation, and suffering;¹⁰ increase the prevalence of depression;¹¹ and even necessitate early retirement.¹² This imposes a burden on relatives, not only because they must accept that the patient may be physically and mentally impaired for life, but also because they must cope with the socioeconomic changes that follow the injury, such as altered employment opportunities and housing situations.¹³ Relatives, therefore, experience a new life situation and responsibilities for which they are unprepared and, at the same time, they are increasingly regarded as a resource on whom HCPs may draw during the disease trajectory and rehabilitation process.¹⁴ Even after hospitalization, much of the daily care for patients with an ABI falls on people within their family environment.¹⁰

In recent years, there has been a growing recognition of the importance of involving relatives in the patient’s disease trajectory.¹⁵ There has been broad political support for involving relatives and supporting the efforts they make.^16–18 Several studies have shown that the involvement of relatives is important for a patient’s health outcome, quality of life, satisfaction, and safety.^18–21 Further, involving patients and their relatives in treatment can substantially improve economic outcomes.²¹ Although involvement from relatives has become a focus of health care systems in Western countries, it remains challenging to implement it in clinical practice, and there are few studies showing how involvement can be achieved.

Additionally, little attention has been given to the conceptual meaning behind involvement.²² Terms such as “involvement,” “collaboration,” “shared decision-making,” and “partnership” are used interchangeably, and agreement on the meanings of and differences between these concepts has not been achieved.²² In this review, we use the term “involvement” because it refers to “active doing” at the individual level.²³ Further, involvement refers to different aspects of the care continuum, including participation in decision-making concerning treatments, sharing information and knowledge, goal setting, discharge planning, and active involvement in nursing care and exercises.²⁴ Relatives of patients with an ABI have their own concerns, including the burden of caring for the patient, that require attention.²⁵ These issues may affect their willingness and ability to be involved in the patient’s disease trajectory.²⁵ Conversely, patients with an ABI depend on their relatives’ support and advocacy. Collectively, this may be overwhelming and exhausting, creating a difficult dilemma for relatives. With the expected positive effects of involving relatives in the patient’s disease trajectory, it is important to scope the evidence on the wants and needs for involvement experienced by relatives of patients with an ABI to be able to individualize the level of involvement. Further, mapping their wants and needs for involvement provides a basis for further research and development of interventions to enhance involvement in clinical practice.

A preliminary search of MEDLINE (PubMed), the Cochrane Database of Systematic Reviews, and JBI Evidence Synthesis conducted in September 2021 identified no current or in-progress systematic reviews or scoping reviews on the topic. The primary objective of this review was to identify and map the breadth of available evidence concerning the wants and needs for care involvement of relatives of patients with an ABI, throughout the course of the disease.

Review question

What are the wants and needs of relatives of patients with an ABI, regarding their involvement throughout the course of the patient’s disease, in all settings?

Inclusion criteria

The inclusion criteria were outlined in the a priori protocol for the review.²⁶ Further clarification and refinement of the concepts are outlined below.

Participants

This scoping review included studies in which data were collected from participants who were relatives (18 years and older) of patients (18 years and older) with an ABI. For this scoping review, a relative was defined as any person related to another by heredity, adoption, or marriage. Relatives could also be individuals who depend on one another for emotional, physical, and economic support.

Concept

The concept of this scoping review is relatives’ wants and needs regarding their involvement in the course of disease in patients with an ABI. “Want” is a desire and may vary according to different individuals; it is not essential for one’s survival. On the contrary, “need” refers to an individual’s essential requirements, including subjective, social, psychological, and physical needs. All individuals have the same basic needs, and they are essential for one’s survival.²⁷ Needs can be identified by an outsider’s perspective (eg, from an HCP), whereas wants are always shaped by the individual’s habits, values, and norms and, therefore, must be expressed (eg, verbally, written) to be met by others. Because the concepts of wants and needs are closely related and often used interchangeably, we cannot be sure that we share a common perception of the concepts with the authors of the included studies. In this scoping review, the 2 concepts will not be distinguished from each other, and we acknowledge that there may be overlap in the results because of this. The wants and needs for involvement were identified in relation to, for example, participation in decision-making concerning treatments, sharing information and knowledge, goal setting, discharge planning, and active involvement in nursing care and exercises.

Context

We considered studies conducted at home, in hospitals, outpatient clinics, primary care settings, long-term care institutions, municipal facilities, or other care facilities, as recent research has shown that the needs of families of patients with an ABI change over time (both during the hospital stay and once discharged).²⁸ The scoping review was not limited to a particular country or health care system.

Types of sources

A broad range of quantitative and qualitative research designs were considered for inclusion, such as randomized controlled trials, non-randomized controlled trials, before-and-after studies, and interrupted time-series studies. This review also considered descriptive observational study designs, including prospective and retrospective cohort studies, case-control studies, and cross-sectional studies. Qualitative approaches including, but not limited to, phenomenology, grounded theory, and ethnography were also considered. Gray literature, such as dissertations, conference proceedings, reports, and documents on organizational websites, were considered for inclusion. Reviews of all types and designs were excluded.

Methods

This scoping review followed the JBI methodology for scoping reviews²⁹ and was conducted according to an a priori protocol.²⁶

Deviations from the protocol

The original intent of this scoping review was to include 2 patient populations in one study (patients with an ABI and patients with a malignant brain tumor) because of similar symptoms and impacts on the patients and an expected high caregiver burden. The search strategy, study selection, data selection, and data analysis were conducted as described in the a priori protocol.²⁶ We found that there were some commonalities across the 2 populations, but there were also some differences. Patients with an ABI are, in most cases, facing a life with disability, and relatives are concerned about existential issues, such as rehabilitation potential and rehabilitation progress.³⁰ Patients with an malignant brain tumor, however, are facing a poor prognosis of about 14 months,³¹ and relatives are more concerned about life expectancy and illness progression. Therefore, we decided to deviate from the protocol and divide the findings into 2 separate scoping reviews.

Additionally, the protocol stated that the participants would include relatives of patients with severe ABI; however, we elected to remove “severe” from the inclusion criteria because it is not the severity of the injury but the nature of the injury that determines relatives’ wants and needs for involvement. We chose not to limit the severity of the injury in the search strategy.

Search strategy

The search strategy aimed to identify both published and unpublished (gray literature) studies. A 3-step search strategy was utilized. As per the process recommended by JBI,²⁹ the first search consisted of an initial preliminary search of MEDLINE (PubMed), CINAHL (EBSCO), and Embase (Ovid) for the involvement of relatives of patients with an ABI. The search for gray literature was conducted in Grey Matters (a tool for searching health-related gray literature) and BASE (one of the world’s biggest search engines for academic, open-access web resources). This was followed by an analysis of the text contained in the titles and abstracts of the retrieved studies and of the index terms used to describe the articles. This informed the development of a search strategy that included identified keywords and index terms tailored to each database. Key terms were determined during discussions between 2 of the authors (RG, IP) and a university hospital librarian. The full search strategy is provided in Appendix I. The reference lists of all included studies were screened for additional evidence.

Only studies in English, German, or Scandinavian languages were included in this scoping review because of time and budgetary constraints. An extensive search was performed in February 2020, which was updated in January and September 2021. The search date filter of 2010–2021 was selected due to the increased focus on the involvement of relatives within the previous 10 years. The context for the involvement of relatives has changed markedly during this time due to, for example, an aging population, introduction of fast-track programs, and shortened lengths of hospital stays.³² The reduced contact with HCPs has resulted in an extra burden on relatives, who experience a considerable responsibility for the patient's well-being by performing a dual role as an extended arm of the HCPs as well as the supportive carer.³²

Study selection

Results for all database searches were exported into EndNote v.20 (Clarivate Analytics, PA, USA), with custom groups created to track the results from each search and database, and duplicates removed. All identified citations were then collated and uploaded into Covidence (Veritas Health Innovation, Melbourne, Australia).³³ To increase the reliability of the screening process performed by the 2 reviewers, a pilot test of the screening process based on the inclusion/exclusion criteria was conducted on a random sample of 3 studies. The pilot test helped clarify the inclusion criteria and with interpreting and classifying the studies accurately.²⁹

The selection of studies published in electronic databases was conducted in 2 stages. During the first stage, 2 of the authors (RG, SN) independently screened the titles and abstracts against the predetermined inclusion criteria for the review. Conflicts at this stage were resolved through discussion. In the second stage, the same 2 authors screened full-text records for compliance with the inclusion criteria. Disagreements between the authors about the eligibility of a paper were resolved through discussion. If no agreement was reached, the 2 authors consulted the third author (IP). Sixteen studies were identified by checking the reference lists in the full-text reading, and they were screened using the same approach. We reported the decision for exclusion in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist.³⁴ A list of studies excluded following full-text review is reported with reasons for exclusion in Appendix II. Consistent with the JBI approach for scoping reviews, a critical appraisal of the included studies was not undertaken.²⁹ Lastly, the PRISMA extension for Scoping Reviews checklist (PRISMA-ScR)³⁵ was used to ensure that all pertinent elements of the scoping review methods were reported.

Data extraction

A data extraction tool was developed according to the scoping review protocol to ensure that the relevant data of the selected studies were extracted.²⁶ Two authors (RG, SN) independently extracted data from the full-text studies using the data extraction tool. This enabled a logical and descriptive summary of the results that aligned with the objective and questions of the review, and facilitated the identification of gaps in the literature. Key information included the authors, year of publication, origin/country of origin, setting, study population, methodology/methods, and findings related to wants and needs for involvement.

An ongoing cross-check from random samples of the included studies was conducted by RG and SN to ensure the accuracy of the data extracted. Disagreements were resolved by consensus or consultation with the third author. Access to the full extraction tables is available upon request.

Data analysis and presentation

Findings were extracted directly from the included studies into a data extraction tool. A descriptive summary of the review findings is presented as recommended by JBI scoping review guidelines,²⁹ with tables and figures to support the data.

Results

Study inclusion

The database searches for the full reviews for both the ABI and malignant brain tumor populations identified 3830 studies and 24 studies were identified through other sources; duplicates were removed. Two independent reviewers (RG, SN) reviewed 2751 titles and abstracts against the inclusion/exclusion criteria. Of these studies, 98 underwent full-text review by the same 2 reviewers, resulting in the exclusion of 57 studies that did not meet the inclusion criteria (Appendix II).

In total, 31 studies on ABI and 10 studies on malignant brain tumors were identified. As a deviation from the protocol, malignant brain tumor was excluded from this review in favor of a separate review focusing on this topic. As a result, a total of 31 studies were included in this scoping review. The PRISMA flow diagram³⁴ (Figure 1) presents the process for the inclusion of studies and the results of the comprehensive search run in February 2020 and updated in January and September 2021, as well as the study selection and inclusion process. Given that the comprehensive search strategy included terms from the initial scoping search, all relevant studies identified in the initial search were retrieved when the final comprehensive search was run.

Figure 1: Search results and study selection and inclusion process³⁴

Characteristics of the included studies

The characteristics of the included studies (aim, country, year of publication, study population, diagnosis, setting/context, methods and design) are presented in Appendix III.

Relatives were, in general, referred to using several different terms: carers,^36–40 caregivers,^41–45 primary caregivers,^46,47 family caregivers,^48–51 family members,^9,52–56 partners,⁵⁷ relatives,^58–62 significant others,⁶³ siblings,⁶⁴ and loved ones.⁶⁵ In the 31 studies, the patients’ diagnoses were referred to as stroke,^{36–38,40,41,43–45,49,54,56,57,59,61–63} TBI,^{39,46,48,51,52,60,64,65} or ABI.^{9,42,47,50,53,55,58} The 31 studies were published between 2010 and 2021, and the years 2013 and 2016 had the most publications (n = 5; see Figure 2). The following countries were represented in the included studies: Canada,^{45,47,49,52,60–63,65} Australia,^{36,37,41,42,50,55} USA,^{43,46,51,53,56,64} UK,^38–40,54 Botswana,⁴⁸ Denmark,⁵⁸ Sweden,⁵⁷ Germany,⁴⁴ the Netherlands,⁵⁹ and Switzerland.⁹

Figure 2: Number of included studies by year of publication

Sixteen studies applied a qualitative study design using semi-structured interviews, focus group interviews, and/or observations^{37,39–41,43,46,49,50,54,55,57,59–61,63,65}; 4 studies used a descriptive approach^36,38,51,52; and 4 studies used a quantitative survey.^9,53,58,64 Four studies used a mixed methods design combining interviews and questionnaires.^44,45,48,62 Three studies employed a multi-methods design using an art therapy technique, interviews, surveys, and demographic data.^42,47,56

The 31 studies included 970 relatives of 970 patients with stroke (n=362), ABI (n=233), and TBI (n=375). Research was conducted across a variety of settings: acute care hospital,^{9,45,51,56,59} inpatient neurorehabilitation center,^{9,39,43,49,50,52,61,62} post neurorehabilitation,^{37,38,41,42,44,46,47,54,55,57,58,60,63–65} post discharge,^36,43,45 outpatient rehabilitation,^49,52,53,62 neurosurgical outpatient clinic,⁴⁸ home,^44,51,58 and community stroke service.⁴⁰

Review findings

Based on JBI scoping review guidelines,^29,66 the results of this study are reported as a descriptive summary. Involvement was described in 3 ways: information, communication, and collaboration with HCPs (Figure 3). A majority of the studies reported on the information content, the perceived gaps in information, the delivery of information, and how this influenced relatives’ involvement in the care of patients with ABI.^{9,36–43,46–49,51,55,57,60,55,62–65} In total, 15 studies reported how relatives experienced receiving very little or no information from HCPs about the cause of the patients’ ABI, what to expect (prognosis), or how to manage (secondary prevention) the consequences of the brain injury.^{36,38–42,46–48,50,51,57,62,64,67} This lack of information adds to relatives’ already high levels of stress, fear, confusion, uncertainty, and lack of security within the health care system, and leaves them unaware of resources available to family members.^{36,39,50,53,56,57,60,64} Furthermore, relatives felt concerned about fulfilling their caregiver role.^49,50,57 Whether information should be verbal or written depends on personal preferences; most importantly, relatives expressed a need for personalized information provided individually.^{9,38,40,44,45,51,60}

Figure 3: Illustration showing the interrelation of information, communication, and collaboration with health care professionals (HCPs), which were reported as fundamental wants and needs for involvement experienced by relatives of patients with an acquired brain injury

A further breakdown of the included studies indicated that informational wants and needs to enhance involvement change over time.^43,45,49,54 In the acute phase of the patients’ ABI, relatives’ information needs center around the diagnosis, symptoms, and treatment.^65,68 In addition to symptoms, family members want information about the care of the patient with an ABI.^{9,41,43,49,55,68} After the patient’s medical condition stabilizes, the relatives’ information needs become more diverse and related to recovery and rehabilitation (information about the injury, the sequelae, and their implications).^40,65,68 Close to discharge, the information needs become especially pronounced and related to setting long-term treatment goals, providing care, negotiating community care, learning about secondary prevention, and navigating the health care system.^{36,40,43,45,52} In the chronic phase after injury, most rehabilitation services are terminated, but the relatives still need to be informed about the patient’s health,⁵⁸ available community services, and caregiver responsibilities.^40,45,50,65

A total of 4 studies reported on how the communication between HCPs and relatives is a key issue and how it influences the likelihood of relatives being involved in the patient’s course of disease.^39,57,61,63 Two studies found that HCPs’ communication skills are essential in providing information and support to relatives and are important factors in involving relatives.^61,65 Four studies emphasized the importance of relatives having the opportunity to talk with HCPs to gain a better understanding of the patient’s situation.^9,38,47,56 Relatives also found it important to have an HCP who could help them cope with all the information provided, and process and contextualize it.^44,55,65 Further, communication provides opportunities to better involve relatives in decision-making processes.⁵⁹

Four studies elaborated on the need for relatives to be actively involved in the decision-making process.^44,55,60,62 Lack of involvement in decision-making can leave relatives feeling isolated and neglected.⁴⁰ Three studies found that relatives need to feel appreciated and useful before they can be involved in the rehabilitation process; this suggests the importance of entering into a partnership with HCPs, in which relatives are part of the care and decision-making process.^51,60,62 This partnership implies listening to the relatives, respecting their knowledge about the patient, supporting them, and allowing them to participate in the care of the patient.^60,65

Ten studies revealed that wants and needs experienced by relatives are also related to support from the HCPs across settings.^{9,37–39,41,43,44,50,55,59} Several studies presented relatives’ desire to be recognized as members of the rehabilitation team, offering personalized knowledge and expertise about the patient.^{9,39,43,50,52,60,63,65} Furthermore, team or family meetings with the HCPs and relatives can create an opportunity for relatives to be involved in the patient’s treatment and care.^52,61 One study found that relatives have a profound need for HCPs to foster hope, as they expressed concern that the rehabilitation process did not adequately reflect this.⁵⁵

Seven studies noted that relatives expressed a need to be involved in the patient’s daily care and therapy sessions.^{9,41,43,49,55,63,65} Some studies reported that relatives had instrumental needs (eg, training in caregiving tasks) and benefitted from HCPs showing them how to assist with feeding, mobilization, and bathing, as well as in physical, occupational, and speech therapy sessions.^45,49,53 Being involved in the daily activities of the patient gives the relatives a sense of participating in the recovery and improves their understanding of the complexity of the injury.⁵¹ This also prepares them to care for the patient at home.^{38,45,49,51,62} Four studies found that when relatives are not involved and engaged in physical, cognitive, and social rehabilitation prior to discharge, they do not feel confident in their ability to care for the patient at home.^38,41,54,56 As a result, relatives expressed a need for the patient’s return to home to be organized ahead of time, and for patients to be accompanied by an HCP (eg, a nurse coordinator) who understands ABI.^41,65

Few studies elaborated on how the rehabilitation environment influences the relative’s likelihood of getting involved in the patient’s disease.⁵⁶ Two studies showed that the physical environment is important for relatives to maintain the energy to be involved in the patients’ disease and treatment trajectory.^50,56 This environment could be a lounge with shared dining and living areas, open access to the patient, and accommodation for family members who stay overnight in the patient’s room.^50,56 Further, relatives’ basic physical needs affected their ability to be involved if, for example, accommodations such as meals, shower, and a bed were not available during hospitalization.^48,56 One study illustrated that when relatives experience a safe, welcoming, and trusting environment, it is easier for them to express their wants and needs for involvement.⁶³

Discussion

This is the first review to map the available evidence concerning the wants and needs for involvement experienced by relatives of patients with an ABI through the course of disease. The findings identified some significant gaps in the literature.

Most of the included studies described the relatives of patients with stroke or TBI. However, 7 studies described relatives of patients with an ABI, which is the umbrella term used for any cerebral damage that occurs after birth.⁶⁹ Therefore, there may be overlaps in the patient’s diagnosis, because ABI includes patients with either traumatic (TBI) or non-traumatic (stroke) injury.

The included studies involved inpatient (acute care hospital, rehabilitation, and intensive care) and outpatient (post-rehabilitation clinics, community stroke service, and home) contexts. Most of the studies were carried out after the patients were discharged from hospital. Past studies have reported that relatives commonly find it stressful to cope with their new and changed life situation due to a family member’s ABI, especially if the brain injury has led to cognitive, emotional, or behavioral changes.^70,71 In some families, this new life situation can strengthen the family ties, but in most cases, relatives perceive a high level of caregiver burden, resulting in high levels of anxiety or depression, guilt, diminished life satisfaction, and social isolation.^70,72 These reactions often emerge after the patients are discharged home and even years post-injury, as the relatives may not be fully aware of the long-term consequences of the injury; this may explain why most of the studies were carried out after discharge.⁷³ During hospitalization, relatives are often present and interested in being active members of the rehabilitation team.⁶⁹ By involving relatives earlier in the patient’s disease and treatment trajectory, HCPs may be able to increase the capacity of relatives in their new role as caregivers, thereby reducing the caregiver burden.

Much has been reported about relatives’ general need for support throughout the patient’s course of disease, which is multifaceted and encompasses a variety of areas, such as informational, instrumental, physical, emotional, existential, and practical needs. However, the wants and needs for involvement experienced by relatives through the course of the disease for patients with an ABI have not been rigorously researched or reported in the literature. Identifying gaps is one goal of scoping the literature.³⁰

Our findings indicate that before HCPs can involve relatives, they must identify and meet their general needs. For example, a relative of a patient with an ABI may experience a lack of information about brain injury symptoms (informational needs); they may not have had enough rest for several days (physical needs); and they may be concerned about the future and experiencing uncertainty, stress, and hopelessness (existential needs). Furthermore, the relative may feel that they must advocate and make sure that the patient receives the right treatment and care (emotional needs). These unmet needs may influence the relative’s ability to be involved in the patient’s care and treatment. If the HCPs are not consistent and understood by the relative, it can lead to misunderstanding and stress.⁷⁴

Because HCPs can identify needs only from an outsider perspective, they must systematically ask relatives about their general needs. Furthermore, HCPs are often perceived as task-oriented rather than person-centered, leaving relatives’ emotional and support needs unmet.⁷⁵ This will require a shift in focus towards identifying the relatives’ individual needs. This is important because relatives cope better if they have the opportunity to be involved as much as possible in the patient’s care during hospitalization.⁷⁶ Thus, the results of this scoping review point to the importance of utilizing family expertise within the patient’s course of disease, which requires an individualized approach, including uncovering relatives’ diverse wants and needs for involvement. Several of the included studies found that the development of supportive interventions to accommodate relatives’ needs is required to improve involvement.^{9,37,39,45,48,49,52,56,58,77} Across the breadth of the included studies, relatives’ informational needs were consistently identified. The reviewed literature acknowledged that well-informed relatives can be crucial to patients’ capacity to cope,⁷⁸ and the better relatives can cope with the situation, the better the patient’s recovery.⁷⁹

The findings of this scoping review suggest that HCPs should be aware of the importance of informing relatives about the ABI (eg, cause, effects, signs, symptoms, risk factors, recovery options) to help them understand the consequences of the diagnosis and enhance their involvement. Relatives should receive practical information and advice on how to help patients with an ABI, and handle daily activities, medications, and aids/tools. Further, relatives should be supported in the distinct transition phase from hospitalization to home, including preparing them for and supporting them in their caregiver role.

This scoping review identified that relatives have a need for HCPs to foster hope. Maintaining hope is one way to help relatives cope with the situation,⁸⁰ and involvement in the patient’s care may give relatives evidence of hope.⁸¹ Further, sustaining hope promotes relatives’ ability to advocate for the best care for the patient.⁸²

Other gaps identified included a lack of a clear definition of the concept of involvement and how it is reflected in clinical practice. This observation underscores the concept of involvement as an aspect of care that requires “active doing,” not only on the part of relatives but also on the part of HCPs. For example, information is considered a one-way communication from the HCP to a relative, which itself does not require action by the relatives and is considered a passive form of involvement. Conversely, involvement in a caring situation, such as tooth brushing, requires active doing on the part of relatives and may be considered an active form of involvement. The relatives may not be trained to undertake the patients’ care needs; therefore, the relatives need to receive support or guidance from the HCP to be involved in the care procedures. This distinction between active and passive involvement may help with understanding the concept of involvement and facilitating involvement in clinical practice. Findings from this scoping review show that both passive and active forms of involvement are wanted and needed.

Limitations of the review

The objective of this study was to identify and map the available evidence concerning the wants and needs for involvement experienced by relatives of patients with an ABI, throughout the course of the injury. There are several limitations to this scoping review. First, few studies have been conducted from the point of view of relatives; therefore, this scoping review was constrained by the lack of focus on relatives’ wants and needs for involvement and relied instead on relatives’ wants and needs in general. Second, the definitions of the concepts of involvement, wants, and needs were not reported in depth in any of the included studies. We acknowledge that the concepts may have been interpreted differently from how we have interpreted them, and this might have limited our ability to answer the research question.

Although we followed a structured framework and conducted a comprehensive search strategy, the possibility exists that some relevant papers were missed. Further, limiting our search to papers published from 2010 to 2021 may have excluded some papers that could have contributed to the topic; however, this was a decision made because the topic sits within a rapidly emerging field with an increased focus on relative involvement within the previous 10 years. Another limitation concerns the variability in the research methods used in the included studies, which presents a challenge for scoping the results. However, we have made every effort to map this literature in a comprehensive and objective way. Inherent to the scoping review methodology, this review did not assess the quality of the included studies.

Conclusion

This review provides insights into the available evidence of the international literature on the wants and needs for involvement experienced by relatives of patients with an ABI throughout the injury trajectory. It offers many avenues for future research. The findings show that relatives’ wants and needs are primarily related to information and communication, but are also related to collaboration with health care professionals. Although most of the studies addressed relatives’ wants and needs in general, there is a research gap in exploring relatives’ wants and needs for involvement in care, treatment, and the overall injury trajectory. The findings illustrate that the complexity of involvement is multifaceted.

Implications for research

The following implications are suggested based on the findings of the current scoping review:

• Research identifying the needs of relatives of patients with an ABI is increasing, and the importance of the involvement of relatives is widely acknowledged. However, it appears that current practice is not evidence-based; hence, mapping the evidence on interventions to involve relatives in the care of patients with an ABI during treatment and rehabilitation is needed.
• The definitions and terminologies describing the concept of patient and relative involvement need to be refined, and further research is needed to achieve consensus and clarify the meanings and differences.
• Future research could focus more on relatives’ wants and needs for involvement, specifically during hospitalization. Helping relatives to be more comfortable in the hospital environment may encourage them to be more involved in the patient’s care. HCPs may be able to increase the capacity of relatives in their new role as caregivers if they are able to identify and use relatives’ wants and needs for involvement in collaboration with relatives.
• Several of the included studies emphasized a need to develop supportive interventions to accommodate relatives’ needs. This could be interventions addressing relatives’ changing educational needs, including how to navigate the health care system, and the need for support regarding rehabilitation information.
• Future studies should provide a basis for the development of effective interventions to achieve involvement and to accommodate relatives’ support needs. This might be the development of a valid tool for clinical practice to systematically identify relatives’ changing needs for involvement at different stages of the care trajectory, including information delivered at appropriate times to ensure that relatives feel prepared and supported when they assume their caregiver role at home.