Understanding the Support and Information Needs of Family Members After Acquired Brain Injury: A Systematic Review

Abstract

The aim of this systematic review was to (a) identify the specific information and support needs of family members caring for ABI survivors and (b) assess the effectiveness of current support systems and resources available. A comprehensive search of the literature was carried out, focusing on studies that were published between the years 2000 and 2025. Seventeen studies met the inclusion criteria. The review employed a narrative synthesis approach to collate findings across papers. The analysis identified five key themes: ABI Knowledge, The Strain of Unsupported Transitions, Emotional and Financial Cost, ABI Support Groups, and Supporting Social Connectedness. The findings indicate significant gaps in current systems of support and information for families of individuals with ABI. Inconsistencies in the delivery of ABI-related information during the acute stage create stress among family members. The post-acute stage presents challenges with instrumental support and insufficient emotional and peer support. This review demonstrates the importance of a more flexible, person-centered approach in supporting families of ABI relatives. Providing tailored interventions and information, with consistent social welfare support are vital in improving the quality of life for both caregivers and ABI survivors.

Introduction

Acquired brain injury (ABI) is defined as any form of damage to the brain occurring after birth, most often due to strokes, tumors, infections, or direct blows and/or trauma to the head. Affecting approximately 69 million people annually worldwide, ABI has broad social and economic impacts, with over 13 million individuals affected by strokes alone (Dewan et al., 2018). Advancements in medical care have increased survival rates following ABI, creating a growing population living with its life-altering, long-term effects (Fins, 2015). These effects vary widely depending on the injury severity and location but may include cognitive, physical, sensory, behavioral, and emotional impairments (Feigin et al., 2013). The long-term nature of the needs of individuals with ABI means that they may require family members to assume caregiver roles to support them in their daily lives (Kratz et al., 2017).

Despite evidence of the profound impact of caregiving responsibilities on families having been documented as long ago as the 1970s (Romano, 1974), long-term support systems for individuals with ABI and their families remain limited (Norman et al., 2023). Families of individuals with ABI often report feeling burdened with managing the daily caregiving needs of their loved ones (Juengst et al., 2022; Lieshout et al., 2020). These responsibilities can include “activities of daily living” such as feeding, washing, and dressing, but can also include wider activities such as managing and organizing appointments, attending appointments as advocates, and meeting transport and communication needs (Muliira et al., 2024). This can lead to emotional stress, financial strain, and social isolation for caregivers (Bermejo-Toro et al., 2020; Kokorelias et al., 2020). This burden intensifies when their loved ones with ABI are unable to return to work, especially if they were previously the primary financial provider. A systematic review of papers reporting post-injury employment prevalence found that over 50% of individuals with moderate or severe TBIs were able to return to work post-injury (Gormley et al., 2019). Without adequate access to long-term care and support, families face subsequent experiences of significant emotional distress and uncertainty (Hickman & Douglas, 2010) with wide-reaching social and economic challenges (Azman et al., 2020).

Despite the crucial role of family members, there is a notable lack of standardized support available to them following ABI (Gan et al., 2010; Norman et al., 2020). Research has found that families struggle with a lack of sufficient access to information and support services, encountering barriers that hinder their ability to manage the behavioral and emotional challenges posed by ABI (Norman et al., 2023; Pindus et al., 2018). Families frequently report unmet needs, highlighting the requirement for accessible, practical support to improve their well-being alongside ABI survivors. Guidance from healthcare professionals is essential to help families adapt and navigate information and support services to understand the long-term implications of ABI. Education surrounding the effects of ABI and access to social and psychological support networks are fundamental in enhancing caregivers’ resilience and coping abilities (Kitter & Sharman, 2015).

This systematic review aims to build upon the findings of previous research by Pindus et al. (2018) and Norman et al. (2023) by identifying the specific information and support needs of family members caring for ABI survivors and assessing the effectiveness of current support systems and resources. Specifically, this systematic review aimed to (a) evaluate the types of information and support family members need while caring for individuals with ABI, and (b) assess the effectiveness of the support and information currently available.

Methods

This systematic review followed the methodological framework of Arksey and O’Malley (2005). The process consists of a clearly defined research question, the identification of relevant research studies, with specific inclusion and exclusion criteria. Data were then extracted and pooled. Each stage of the research process is described in greater detail below.

Search Strategy: The search aimed to find all studies related to the support and information needs of family members of individuals with ABI published between 2000 and 2025. The search strategy included a review of the reference list of relevant papers, as well as seven databases: AMED, CINAHL, MEDLINE, PsycARTICLES, PsycINFO, PubMed, and Web of Science. An initial database search was carried out on the 22nd of January 2022, with a final search on the 15th of October 2025. Language restrictions were set to include papers that were published in English only. Search terms focused on “brain injury,” “information needs,” and “support needs.” Operators “OR” and “AND” were used to enhance the search. A complete list of search terms and operators is provided in Appendix A.

Inclusion Criteria: To be included, papers had to be published between 2000 and 2025. This was to ensure an accurate reflection of recent support and information provision for family members. All study design types were included, and papers had to report findings from primary research studies. Papers had to include information and/or support resources and services accessed by family members of individuals with ABI or information and/or support needs identified by families following ABI. Papers also had to be published in peer-reviewed journals to ensure reliability, and papers had to be written in, or translated into, English.

Exclusion Criteria: Research on the information needs of family members of individuals with congenital brain injuries was excluded as were those for those whose family members have other neurodegenerative conditions. Studies that did not address family experiences related to assessing information and support services were excluded from the review. No papers were excluded on the basis of scientific rigor.

Data Collection: The process started with a review of the titles and abstracts of 230 studies to determine their relevance. The resulting list was reviewed by the first, second, and last authors. Any disagreements were resolved through consensus meetings. After excluding duplicates and those that did not meet the inclusion criteria, the remaining studies underwent a full-text review, and relevant data were extracted.

Data Extraction: The following details were recorded from studies included:

Author and publication year

Participant information

Main findings relating to support and information needs

Recommendations and conclusions

Data Synthesis: Data synthesis was carried out by following the guidelines set by Popay et al. (2006), which focused on creating a narrative synthesis approach to combine results across studies. This process involved coding and organizing the data into themes. Next, relationships between the themes were examined to understand the overall support and information needs of family members, and how these themes were related. Where quantitative data were included within studies, the thematic analysis focused on the overall summary of findings and author conclusions from the data.

Results

Across the seven databases, and through review of the reference list of relevant research articles, 230 papers were obtained. Following discussions between the authors and the removal of duplicate studies and those focusing on experiences not relevant to the review, 213 studies were excluded. The final number of studies that met the inclusion criteria was 17 (see Figure 1 for a flowchart of this process). Of the included studies, seven were quantitative studies, eight were qualitative, and two utilized a mixed methods approach. Methodological rigor and quality of reporting varied across the studies, providing a complex landscape to navigate when synthesizing the data. Studies represented populations across the globe, with projects recruiting from South America (1), Malaysia (1), the United Kingdom (2), Australia (2), Canada (3), and the USA (8). It is clear from these studies that similar difficulties were reported by families after ABI, despite geographic location and differences in societal structures. The included 17 studies were coded, and five themes were developed, using the approach outlined by Popay et al. (2006): (a) ABI Knowledge, (b) the strain of unsupported transitions, (c) Emotional and Financial Cost, (d) ABI support groups, and (e) Supporting Social Connectedness (see Table 1). Where studies were quantitative in nature, summaries and findings, and the author conclusions were collated for inclusion within the thematic analysis.

Figure 1.

Flowchart of the systematic review process.

Table 1.

Data Extraction From Included Studies.

Author and Publication Details	Country	Participant Information	Study Design, Aims, and Focus	Key Findings	Family Group
Arango-Lasprilla et al. (2010)	Colombia, South America	29 carers (10 men and 19 women) of adults with TBI at least 6 months prior, mean time since injury 33 months.	Quantitative To determine family needs in a group of family caregivers of individuals with TBI from Colombia. Using the Family Needs Questionnaire (Rotondi et al., 2007) comprising 40-items generating six sub-scales.	The most highly rated need of importance was the health information subscale. The Instrumental Support sub-scale had the lowest mean importance rating. Of the specific needs identified six items from the health information subscale were in the top 10 most important needs. Those ranked lowest were primarily items from the emotional support and community support network sub-scales. Over 50% of unmet needs came from the emotional support sub-scale.	Various family members
Denham et al. (2019)	Australia	n = 24 interviews with carers of stroke survivors, 79.2% female, 83.3% spouses, length of post stroke between 3 weeks and 17 years, average 5.7 years, 54.2% of stroke survivors were male.	Qualitative The study explored the unmet needs of carers of stroke survivors, and their preferences for interventions and support services.	Key unmet needs identified by carers of stroke survivors in this study centered on four main themes: (1) social relationships and support; (2) adequacy of information; (3) taking care of oneself; and (4) accessing appropriate services.	Partners
Drake et al. (2024)	Australia	Thirteen rehabilitation clinicians and ten parents with children who had sustained an ABI within two years of recruitment.	Qualitative/Mixed methods Semi-structured interviews to explore parents’ and clinicians’ perspectives regarding HOPE's usability, acceptability, and future implementation. System Usability Scale (SUS; Brooke, 2013)	Participants were satisfied with HOPE's family-centered content and delivery. They expressed having benefited from using HOPE and offered suggestions for its optimization. Participants reflected on how HOPE could be introduced to and used by families, and its potential usefulness in educating others about paediatric ABI.	Parents
Finn et al. (2022)	USA	Family caregivers of service members and veterans (SMVs) enrolled in the Veterans Affairs Polytrauma Rehabilitation Centers (VA PRCs) TBI Model Systems (TBIMS) national database who were within their first 5 years post-TBI (n = 427).	Quantitative To describe the self-reported needs of family caregivers of service members and veterans (SMVs) who sustained a traumatic brain injury (TBI) and to identify predictors of the unmet family caregiver needs. Family Needs Questionnaire-Revised (FNQ-R; Kreutzer & Marwitz, 2008).	FNQ-R item-level and domain-level descriptive results indicated that health information was the most frequently met need. In contrast, emotional and instrumental support domains were the least often met. On average, family caregivers reported that 59.2% of the 37 FNQ-R needs were met at the time of the follow-up assessment. Regression models indicated that both the number of SMV-perceived environmental barriers and whether the SMV received mental health treatment within the past year predicted the number of unmet FNQ-R needs. SMV-reported environmental barriers predicted increased unmet needs in all six family caregiver domains, and SMV mental health treatment in the past year predicted more unmet family caregiver emotional support, community support, and professional support needs.	Whole family
Fisher et al. (2021)	USA	Caregivers of 572 children, aged 3 to 18, who were hospitalized overnight following complicated mild to severe TBI between 2002 and 2015.	Quantitative To identify predictors of unmet need. Caregivers completed ratings of depression and distress, child behavior problems, family functioning, and behavioral health service utilization. Measures used were: Family Assessment Device (FAD; Miller et al., 1985), the Child Behavior Checklist (CBCL), the Behavior Rating Inventory of Executive Functions (BRIEF; Chapman et al., 2010), the Home and Community Social Behavior Scale (HCSBS)—Social Competence subscale (Merrell et al., 2001), the Symptom Checklist 90-Revised (SCL-90-R; Derogatis & Savitz, 1999), and the Center for Epidemiological Studies Depression Scale (CES-D; Radloff, 1977).	For children, unmet behavioral health service need was defined as an elevation on one or more child behavior problem scales without receipt of behavioral health services. For caregivers, unmet need was defined as an elevation on either a depression or distress scale without behavioral health service utilization. Among those with behavioral health needs, rates of unmet need were high for both children (77.8%) and caregivers (71.4%). Poorer family functioning was related to more unmet need in children (F(1, 497) = 6.57, P = .01; OR = 1.8) and caregivers (F(1, 492) = 17.54, P < .001; OR = 2.7). Children with unmarried caregivers also had more unmet behavioral health service need than those with married caregivers (F(1, 497) = 12.14, P < .001; OR = 2.2). In conclusion, unmet needs are common after paediatric TBI and relate to family factors.	Parents
Holloway and Tasker, (2019)	United Kingdom	n = 110 relatives of individuals with an ABI 85% female, age range 18 to 75, 74.5% parents of person with an ABI	Quantitative/Mixed methods Online survey sought the views of family members of people with ABI to ascertain their experience of the condition and their views and experience of related health and social care services. Respondents ranked the difficulties met by their relative living with an ABI and rated the services they had encountered. A series of open questions enabled respondents to provide greater detail regarding their experience and knowledge. An online survey was created by Holloway et al., live for 3 months, and targeted towards relatives of individuals living with individuals with an ABI.	Relationships between the injured and non-injured parties change, alterations to roles and responsibilities are difficult and mediated via unending and complex grief. Relatives reported poor levels of involvement in decisions regarding the provision of social and health care services, a failure to be given good, accurate information in a timely fashion and the need to “fight” for virtually any service provided. Service provision was very regularly criticized for being either entirely absent, unaware of the impact of brain injury, failing to take account of actual functioning and/or structured in ways that are not concomitant with the needs of the injured person or the relative. Lack of knowledge of the impact of ABI by non-specialist staff and services is particularly highlighted as a barrier to progress and an added burden for relatives to contend with. Social work in particular was commented upon most negatively, most often for a failure to understand the condition and needs. Valued services and professionals are noted to be humane, knowledgeable about ABI, aware of the impact ABI has on the non-injured relative and able to act as a single “one-stop” focal point for service provision.	Whole family
Holloway et al. (2019)	United Kingdom	16 family members of people with severe ABI	Qualitative Using semi-structured interviews, this study explores how families are affected and integrates their views on the formal/informal support received as a consequence of ABI.	Family members’ experiences are complex, enduring and are affected by the context in which the ABI occurs as well as by formal/informal support. The grief experienced by family members is ambiguous, develops over time and family members perceive little option but to remain involved. Experience of formal and informal support is noted to vary significantly in availability and quality, poor support exacerbates difficulties and isolates family members.	Whole family
Keenan and Joseph (2010)	Canada	25 family members with 15 injured relatives between them Interview 1: 21 female, 4 male Interview 2: 15 female, 4 male	Qualitative To identify the needs expressed by family members as patients with severe TBI progress through their recovery. Two interviews were undertaken: 1. Discharge from ICLI; 2 discharge from acute care facility to home or to rehabilitation	Four main themes at interview 1: Trajectory of family experience: getting the news; uncertainty about the prognosis; making sense of the news and moving on. At interview 2: themes included involvement in care; looking for progress; managing life and holding on to hope. How family members lived the experience was influenced by support; information; professional support and community support	Whole family
Kerr et al. (2022)	USA	A panel of 1083 randomly selected U.S. residents, aged ≥18 years and identifying as parents of middle school children	Quantitative This study examined sport-related concussion (SRC) information sources used by parents of United States middle school children (age: 10–15 years). Utilised an online questionnaire capturing parental and child characteristics, and utilization and perceived trustworthiness of various sources of SRC-related information.	Doctors/healthcare providers (49.9%) and other healthcare-related resources (e.g., Centers for Disease Control and Prevention, WebMD) (37.8%) were common SRC-related information sources; 64.0% of parents utilized ≥1 of these sources. Both sources were considered “very” or “extremely” trustworthy for SRC-related information among parents using these sources (doctors/healthcare providers: 89.8%; other healthcare-related resources: 70.9%). A 10-year increase in parental age was associated with higher odds of utilizing doctors/healthcare providers (adjusted odds ratio (ORadjusted) = 1.09, 95%CI: 1.02–1.16) and other healthcare-related resources (ORadjusted = 1.11, 95%CI: 1.03–1.19). The odds of utilizing doctors/healthcare providers (ORadjusted = 0.58, 95%CI: 0.40–0.84) and other healthcare-related resources (ORadjusted = 0.64, 95%CI: 0.44–0.93) were lower among parents whose middle school children had concussion histories versus the parents of children who did not have concussion histories.	Parents
Kolakowsky-Hayner et al. (2001)	USA	57 caregivers (mostly Caucasian women aged between 19 and 82 years) for a person with TBI (mixed severity) at least 4 years post-injury.	Quantitative To characterize family member needs and perceived quality of life before injury and long-term after injury. Utilised the Virginia Traumatic Brain Injury Family Needs Assessment Survey (Serio et al., 1997) and quality of life questions.	Family member life satisfaction was higher pre-injury (47.3% very satisfied, 40% somewhat satisfied) than post injury (23.2% very satisfied, 35.7% somewhat satisfied). The numbers who reported being somewhat, or very, dissatisfied increased nearly sixfold. Health information (51.43%) and involvement with care (47.93%) needs were often rated as met. Instrumental support (31.52%) and professional support (28.38%) needs were most often rated as not met.	Whole family
Lefebvre et al. (2005)	Canada	8 patients with moderate-to-severe TBI, 8 family members, 22 health professionals, and 9 physicians. Mean time since injury = 2.8 years.	Qualitative Semi-structured interviews to investigate the experiences of individuals who had sustained a TBI, their families and the physicians and professionals involved, from the beginning of acute care to their reintegration in daily life.	5 themes across all groups: information, which refers to communication and sharing of information: information transmission in each stage is limited but physicians were concerned about false hopes. Uncertainty: How will he be when he comes out of hospital? Will he even know me? Relationships between the actors: The experience of the families shows that relations with physicians and professionals is positive when the families are recognized for what they know.	Whole family
Leith et al. (2004)	USA	10 TBI persons (mixed severity sustained in the last 5 years) and 11 family members.	Qualitative Four focus groups were undertaken to learn what participants perceive their service needs to be and where they experience service gaps in the existing system of TBI services in South Carolina.	The need for: early, continuous, comprehensive service delivery; information/education (too much and too little information leads to confusion); formal/informal advocacy; empowerment of persons with TBI/families; and human connectedness/social belonging (extreme isolation, emotional support identified as a major need).	Whole family
Marwitz et al. (2023)	USA	Participants were adult caregivers (n = 176) and individuals with TBI who required inpatient rehabilitation at six TBI Model System sites.	Quantitative Identify important targets for an intervention to improve caregiver resilience as well as outcomes for people with TBI. Measures used included the Connor–Davidson Resilience Scale-10 (C-DRS-10; Campbell-Sills & Stein, 2007), the Family Needs Questionnaire (FNQ; Kreutzer et al., 1988), the Zarit Burden Interview (ZBI; Bachner & Rourke, 2007), the Patient Health Questionnaire-9 (PHQ-9; Kroenke et al., 2001), and the Generalized Anxiety Disorder-7 (GAD-7; Spitzer et al., 2006).	Caregivers endorsed levels of personal resilience that were comparable to norms for community samples and slightly higher than groups under stress or with medical illness. Reports of the burden associated with the caregiving role were relatively low, as was reported psychological distress. In a multivariable model, higher proportions of met emotional support needs were associated with increased resilience.	Adult caregivers
Othman et al. (2021)	Malaysia	10 caregivers of individuals suffering from traumatic brain injury	Qualitative Semi-structured interviews exploring the needs of caregivers, their coping mechanisms towards stressful and traumatic circumstances, and how they provide care to their loved ones during the COVID-19 pandemic.	Three significant themes namely, (a) Support needed, (b) the information need for care, and (c) developing self-resilience. The results also showed that caregivers really need support from the various parties, and the participants lack information on specific care techniques for the severe traumatic brain injury (TBI) survivors.	Caregivers
Paterson et al. (2001)	Canada	7 survivors of moderate-severe TBI (time since injury range 10–30 months) 8 family caregivers; 4 groups of healthcare professionals and third-party insurance adjusters (5–8 in each).	Qualitative Why do families of survivors of TBI do not always perceive that their learning needs have been met by healthcare professionals? Interviews with family members, and four focus groups with professionals	7/8 TBI family member pairs could not recall receiving information. HCP group all reported extensive information giving before discharge. HCP group believed severe anxiety inhibits learning. Family members said they were intimidated, foreign, daunting healthcare confused by different roles. Information is overwhelming and poorly timed.	Caregivers
Rotondi et al. (2007)	USA	80 adults with TBI and 85 family caregivers/support persons. No restriction for time post-TBI.	Qualitative To determine the expressed needs of persons with TBI and their primary family caregivers. Semi-structured interviews data analysed using content analysis	Respondents described their needs via phases that paralleled transitions in settings, treatments, and responsibilities (ie, acute care, in-patient rehabilitation, return home, and living in the community). Prominent themes during in-patient phases included provider quality, emotional support, and understanding the injuries. Prominent themes during the latter 2 phases included guidance, life planning, community integration, and behavioral and emotional issues. Themes reported by both groups in all phases was understanding injuries, treatments and consequences. Family emotional and mental health only identified in support person data. Insufficient education and preparation for the future.	Caregivers
Tverdov et al. (2016)	USA	29 family members who did not provide daily care but who were involved in the care process	Quantitative Participants completed self-report questionnaires including the Family Needs Questionnaire Revised (FNQ:R; Kreutzer & Marwitz, 2008), the Service Obstacles Scale (SOS; Marwitz & Kreutzer, 1996), the Depression Anxiety Stress Scale 21 (DASS-21; Henry & Crawford, 2005), the World Health Organization Quality-of-Life (WHO-QOL BREF; Skevington et al., 2004), and the Social Problem—Inventory-Revised: Short (SPSI:R-S)	Primary family members were satisfied with the information and professional support. Female family members had higher levels of distress than males, but the majority were in the average range for levels of psychosocial distress. Perceived needs, obstacles to services, psychological distress and social problem solving of family members of persons with ABI. These family members are at a greater risk for depression, anxiety, comatose symptoms, and social isolations and diminished life satisfaction. Identifying family members' characteristics that contribute to life distress can aid in developing effective supports	Family members not providing daily care

ABI Knowledge

Family members expressed a strong need for clear, consistent, and trustworthy ABI information. Six studies (Denham et al., 2019; Finn et al., 2022; Holloway & Tasker, 2019; Keenan & Joseph, 2010; Kerr et al., 2022; Kolakowsky-Hayner et al., 2001) highlighted that family members greatly rely on healthcare professionals for information, particularly during the acute stage of care. However, information was reported to be provided inconsistently, leading to frustrations for family members (Holloway et al., 2019; Holloway & Tasker, 2019; Paterson et al., 2001). Additionally, discrepancies in perceptions of healthcare professionals and family members regarding the appropriateness of ABI information provided at discharge often caused families to need to seek ABI support from voluntary organizations (Holloway et al., 2019). A single point of access to information and care needs was noted as crucial for family members (Holloway et al., 2019; Paterson et al., 2001). Families frequently struggled with inconsistent information, resulting in frustration and delays in accessing necessary resources.

The Strain of Unsupported Transitions

At the post-acute stage, six of the 17 studies described family members expressing a need for more comprehensive information to adequately prepare for their long-term responsibilities and adapt to the new home environment (Denham et al., 2019; Holloway et al., 2019; Kolakowsky-Hayner et al., 2001; Lefebvre et al., 2005; Othman et al., 2021; Rotondi et al., 2007). Health information was provided in some instances (Finn et al., 2022) at this stage of care; however, there was an overall lack of emotional support and access to peer support (Kolakowsky-Hayner et al., 2001; Marwitz et al., 2023). Practical assistance and the impact of transportation barriers were highlighted as ongoing problems with no support provided (Denham et al., 2019; Kolakowsky-Hayner et al., 2001). Families felt that their quality of life and overall satisfaction reduced post-injury, with a need for long-term support and frequent follow-ups being seen as vital for managing the changing needs (Holloway et al., 2019; Kolakowsky-Hayner et al., 2001). The transition from acute to post-discharge care left families unprepared for the long-term responsibilities they face. While basic healthcare needs are often met, significant gaps in emotional, peer, and practical support remain.

Emotional and Financial Cost

The personal well-being of family members was identified as a significant concern in six of the 17 studies reviewed, with high levels of distress and depression reported (Fisher et al., 2021; Holloway et al., 2019; Holloway & Tasker, 2019; Marwitz et al., 2023; Paterson et al., 2001; Tverdov et al., 2016). Emotional support, such as that available through counseling services and community, peer-led support, was viewed as valuable, yet largely unavailable for families (Arango-Lasprilla et al., 2010; Finn et al., 2022; Holloway et al., 2019). The emotional burden for family members to care for their loved one following ABI was intensified by financial challenges they reported facing, which negatively impacted their mental health, suggesting the need for greater access to professional support and resources to manage these challenges (Marwitz et al., 2023; Paterson et al., 2001; Tverdov et al., 2016). Emotional and financial stresses affected caregivers' mental health, demonstrating the need for accessible mental health services and community support (Marwitz et al., 2023).

ABI Support Groups

Five out of the 17 studies emphasized support groups and community networks as highly valued by family members, as they offer emotional support and provide practical support with their loved one's rehabilitation process (Arango-Lasprilla et al., 2010; Drake et al., 2024; Holloway et al., 2019; Keenan & Joseph, 2010; Rotondi et al., 2007). Positive experiences with support groups were linked to clear communication, empathy, and inclusion in care decisions. The Heads Together Online Peer Education (HOPE) program was one noted intervention that offered the flexibility families needed, using storytelling to share experiences and hear from other families (Drake et al., 2024). The benefits of community support were observed, with positive long-term well-being outcomes for family members who continued to have access to these support groups (Rotondi et al., 2007). Support groups provide essential emotional and practical benefits to families, helping them maintain a sense of engagement throughout the recovery process and reducing feelings of isolation.

Supporting Social Connectedness

Six out of the 17 studies revealed unmet social care needs for family members, indicating that support from the community and a sense of social belonging were important yet often unmet needs (Arango-Lasprilla et al., 2010; Denham et al., 2019; Leith et al., 2004; Marwitz et al., 2023; Rotondi et al., 2007; Tverdov et al., 2016). Many families reported barriers to accessing support due to time constraints, financial challenges, and a lack of government or local authority assistance (Denham et al., 2019; Finn et al., 2022; Rotondi et al., 2007). Financial issues were often challenging for family members, impacting their ability to meet instrumental needs, such as providing transportation to their loved one, which contributed to increased levels of depression (Tverdov et al., 2016). Access to continuous professional and community resources was highlighted as essential for family members (Marwitz et al., 2023). Social care and welfare needs, including financial support and a sense of community belonging, were found to be needs broadly left unmet due to barriers to access.

Discussion

The systematic review explored the experiences of family members seeking information and support while providing care for relatives with an ABI. The findings highlight the profound and multifaceted challenges faced by families, underscoring the need for more tailored and flexible services. Rather than integrating families into existing systems, services must adapt to their unique circumstances. Five key themes emerged with families needing support and information around ABI Knowledge, particularly in the post-discharge stage after injury. Papers identified the emotional and financial support needs of families, and a desire for access to support groups, and support with improving social connectedness. The review highlighted a need for more effective support and information needs.

Interestingly, of the 17 papers identified within this review, only one explored the effectiveness of specific intervention support for families post-ABI. While other papers did exist that were excluded from this study, this highlights a distinct shortcoming in the existing literature. While Brain injury itself has received limited attention in the social care research field (Norman et al., 2023), there is an even greater gap pertaining to family and carer experiences. This highlights the invisibility of carers within this field. With many countries moving increasingly towards a model of “care in the community,” there is an urgent need for research to take more seriously the role of family carers (Skuse, 2017) and to take time to understand and address their needs.

ABI Knowledge

The review identified an important gap in the quality and consistency of information provided to ABI relatives’ family members. While families rely heavily on healthcare professionals for ABI information (Denham et al., 2019; Finn et al., 2022; Holloway & Tasker, 2019; Keenan & Joseph, 2010; Kerr et al., 2022; Kolakowsky-Hayner et al., 2001), the delivery of information is often inconsistent, leaving families feeling unsupported and anxious (Holloway et al., 2019; Holloway & Tasker, 2019; Paterson et al., 2001). Current practices fail to address the emotional and cognitive burdens families face, especially during the acute stage of ABI. A personalized approach to communication from healthcare professionals, which emphasizes appropriate timing, clarity, and consistency, may help to reduce uncertainty and empower families in their caregiving roles (Holloway et al., 2019; Paterson et al., 2001).

The Strain of Unsupported Transitions

The transition from acute to long-term care is a critical, yet under-supported period for families. The review revealed that instrumental needs, such as transportation, are particularly unmet for disadvantaged families (Denham et al., 2019; Kolakowsky-Hayner et al., 2001). Moreover, a lack of emotional support and access to peer support exacerbates stress and diminishes the quality of life for families (Kolakowsky-Hayner et al., 2001; Marwitz et al., 2023). Healthcare professionals must adopt a dynamic and empathetic approach to families’ evolving needs during this stage, offering personalized support that addresses their practical and emotional challenges over the long-term stages of care.

Emotional and financial cost: Caring for ABI relatives significantly affects family members’ health, with high levels of stress, depression, and anxiety commonly reported (Fisher et al., 2021; Holloway et al., 2019; Holloway & Tasker, 2019; Marwitz et al., 2023; Paterson et al., 2001; Tverdov et al., 2016). While services like counseling and peer support are beneficial, barriers to accessing services exist, with family members having limited funds and time to engage effectively (Arango-Lasprilla et al., 2010; Finn et al., 2022; Holloway et al., 2019; Norman et al., 2023). There is a need for more widely available support that is free and flexible in delivery to enable family members to engage despite their caregiving roles.

ABI Support Groups

Support groups offer a valuable resource for emotional and practical support. Interventions such as the HOPE program demonstrate encouraging results in fostering resilience and community among caregivers (Drake et al., 2024). Tailored support that meets diverse needs could mitigate feelings of isolation and enhance the caregiving experience. Support groups are called upon to strive to improve inclusivity and emotional services to ensure they can better address the wide-ranging needs of families (Arango-Lasprilla et al., 2010; Drake et al., 2024; Holloway et al., 2019). However, inclusivity and accessibility remain areas for improvement, with minimal numbers of family members from ethnically diverse groups accessing support groups (Rotondi et al., 2007). There is also a need to ensure that facilitators of such groups are suitably trained, enabling them to provide sensitive and appropriate support to a range of family members with different life stories and backgrounds (Holloway & Tasker, 2019; Norman et al., 2023; Odumuyiwa et al., 2019).

Supporting social connectedness: The review identified systemic inadequacies in social welfare and access to social connectedness for families of ABI survivors. Issues such as frequent reassessments for carers' benefits, inconsistent government support, and a lack of social networks place additional stress on families (Denham et al., 2019; Leith et al., 2004; Marwitz et al., 2023; Rotondi et al., 2007; Tverdov et al., 2016). Across the countries reported by the papers, there is a general lack of legislation that supports carers' rights, particularly where individuals are being cared for by family. This is further complicated when the nature of the caring responsibilities falls outside of personal care and support with activities of daily living. Further action is needed to provide stable and comprehensive financial and social support to family members who are trying to juggle supporting the families financially and caring for loved ones (Kratz et al., 2017).

This review has demonstrated gaps in the information and support provisions in current health and social care for families after brain injury. Papers have identified that support is required for families to address their lack of knowledge of ABI early on in their loved one's journey, and guidance in how to manage brain injury after the initial acute stage of injury (Bermejo-Toro et al., 2020; Kokorelias et al., 2020; Whiffin et al., 2021), and these papers clearly identify a need for emotional, financial, and social welfare support for families after ABI.

Limitations

Only papers published in English were included in this review, making the findings largely focused on the Western world. Due to the lack of data pertaining to tested interventions in the areas of support and information for families, this review was unable to provide any objective conclusions about the overall effectiveness of existing support and information services, a factor that reflects the lack of high-quality studies undertaken in this area.

Future research should address the gaps identified by exploring family experiences in larger, more diverse populations, particularly with respect to social, emotional, and financial needs. Studies need to focus on intervention design models with comprehensive data that demonstrates efficacy of approaches. Furthermore, a centralized source for clear and reliable information could help to provide more readily accessible resources for families following ABI. Improving resources for family members would help to reduce stress and promote greater well-being for caregivers and enable them to better support their loved one with a brain injury.

Conclusion

This systematic review highlights the significant challenges faced by families of ABI survivors, emphasizing the necessity of a more personalized and flexible approach to caregiving support. While programs of support and information are available, substantial gaps remain in addressing families’ information, emotional, financial, and social welfare needs. To improve outcomes for caregivers and their relatives, it is imperative that health and social care systems prioritize support and information services for families after brain injury.