Andrews, C., Norman, A., Jackson, S., & Holloway, M. (2026). Understanding the Support and Information Needs of Family Members After Acquired Brain Injury: A Systematic Review. The Family Journal, 0(0). https://doi.org/10.1177/10664807261415878

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.

Lundh, M. G., Nordentoft, S., Smedegaard, P. S., Aadal, L., Loft, M. I., Poulsen, I., & Guldager, R. (2025). Interventions facilitating the involvement of relatives of patients with acquired brain injury or malignant brain tumour: A scoping review. Journal of Clinical Nursing, 34(3), 784-794.https://doi.org/10.1111/jocn.17328

ABSTRACT Aim: To identify and map the evidence on interventions facilitating the involvement of relatives of patients with an acquired brain injury (ABI) or a malignant brain tumour (MBT).Background: An ABI or a MBT are severe diseases that have profound impact on the lives of patients and their relatives. The well-being of the patient may be deteriorated, and relatives may experience a new role and changing caregiving tasks. Involvement of relatives seems essential, and there is a need for identifying interventions facilitating the involvement. Design: Scoping review. Methods: The Joanna Briggs Institute methodology was used in this review and the review was reported in accordance with the PRISMA extension for scoping reviews. Data Sources: The literature search was conducted in MEDLINE, Embase, CINAHL and Cochrane Library. Reference lists of included studies, Google Scholar and Web of Science were also searched. Results: In total, 46 studies were included of which 36 (78%) involved patients with stroke. Median duration of study interventions were 8 weeks, and nurses were in-volved as providers of the intervention in 23 (50%) studies. Thirty (65%) studies used a multicomponent intervention. Thirty-five unique outcomes were identified using 60unique outcome measurements. Conclusion: Interventions facilitating the involvement of relatives differed importantly in key characteristics of study interventions, and in relation to the context in which they were used. There was no consensus regarding choice of outcomes and outcome measurements. Our results highlight the complexity of interventions in this field.

Morrison, B., Patel, T. A., & Brackin, M. (2025). Family functioning, community participation, and rehabilitation barriers in the acquired brain injury community: An exploratory analysis. Rehabilitation Counseling Bulletin, 68(3), 168-181. https://doi.org/10.1177/00343552241236891

ABSTRACT Acquired brain injury (ABI) is the second most common cause of disability in the United States. Prior research highlights family functioning as an important predictor of psychosocial outcomes in the ABI population; however, there remains limited research aimed at understanding the role of family functioning in predicting rehabilitation progress and community participation. A quantitative, exploratory, descriptive research design was used for this study. A total sample of 49 individuals with mild-to-moderate ABI were recruited from a university medical center and outpatient rehabilitation center. Participants completed measures of demographics, community participation, family functioning, and perceived rehabilitation barriers. Data were analyzed using descriptive statistics and multiple regression (MR) analysis. Two MR models were examined, one with rehabilitation barriers as the dependent variable and one with community participation as the dependent variable. Financial support and perceived rehabilitation barriers contributed significantly to variance in community participation satisfaction, while financial support, family functioning, and community participation satisfaction each accounted for a significant portion of variance in perceived rehabilitation barriers. Overall, the full MR 1 model accounted for 33% of variance in community participation satisfaction, while the full MR 2 model accounted for 51% of variance in perceived rehabilitation barriers. Although more research with larger, more diverse samples is needed, this study provides rehabilitation and counseling professionals with important psychosocial concepts to consider in assessment and treatment and helps clarify the role of family in promoting positive rehabilitation and participation outcomes in the ABI community.

Culley, S., Byrne, F., da Silva Ramos, S., & Frith, H. (2025). “We’re all closer”: narratives of family identity after acquired brain injury. Disability and rehabilitation. https://doi.org/10.1080/09638288.2025.2592499

ABSTRACT Purpose: Acquired brain injury (ABI) profoundly impacts the whole family. This study explores family identity using a relational, strengths-focused framework to understand how families navigate ABI together. Materials and methods: Four adult family units, consisting of four survivors of ABI(1–18 years post-injury) and seven family members (aged 24–74), were interviewed together two/three times. Using Narrative Analysis an overall narrative (gestalt) of ABI as an ongoing family life transformation, encompassing both disconnecting and unifying narratives, was construct. Results: Six interconnected stories of family identity were identified: (1) Disjointedness in response to the trauma of ABI; (2) Closeness remedying disjointedness with continuity and growth; (3) Incomprehension and disablism in interactions with people; (4)Incomprehension and disablism may be mitigated through understanding, kindness and inclusion; (5) Protectiveness from family members in tension with survivor’s wish for independence; and (6) Humour to lighten the seriousness of ABI. Disconnecting narratives spoke to the challenges of responding to the trauma of ABI. Unifying narratives could bring the family together and help manage the challenges of ABI. Conclusions: Integrating unifying and disconnecting narratives may help families to make sense of ABI, and clinical services could embed relational and strengths-based understandings into family support post-ABI.

Rohrer-Baumgartner, N., Laberg Holthe, I., Svendsen, E. J., Dahl, H. M., Borgen, I. M., Hauger, S. L., ... & Løvstad, M. (2025). Children and families with chronic pediatric acquired brain injury in need of rehabilitation: characteristics and main challenges in daily life. Disability and rehabilitation, 47(6), 1543-1552. https://doi.org/10.1080/09638288.2024.2376936

ABSTRACT Purpose: to increase our understanding of child and parent characteristics, family functioning and main challenges in daily life in children and families in need of rehabilitation in the chronic phase of pediatric acquired brain injury (paBi). Methods: Fifty-eight children (aged 6–16, 48% girls) were included at least one year post aBi. Demographics and questionnaire data regarding children’s symptom burden, parents’ emotional symptoms and family functioning were collected. children and parents named their main paBi-related challenges in daily life, and these were categorized in accordance with the international classification of Functioning, Disability and health (icF). Descriptive statistical analyses were performed. Results: Parents’ emotional symptom loads were high; 22.3% had moderate, moderate-severe or severe depression symptoms while the equivalent number for anxiety symptoms was 17.9%.Problematic family functioning was reported by 32.1% of parents. When asked about their main paBi-related challenges in daily life, 69% of children named school. the most frequent icF chapters for children and parents were school education, energy and drive functions (mainly fatigue), and emotional functions. codes spanned across all icF-domains. Conclusions: Rehabilitation for paBi should have a broad, interdisciplinary, and family-centered approach, with school, fatigue, and emotional functioning of parents and children as potential core elements.

Parsons, A., Norman, A., Holloway, M., Deacon, J., & Clark-Wilson, J. (2025). “His brain injury was missed, it led to his death’: Brain Injury Case Managers’ experience of Safeguarding. Journal of Adult Protection, 27(6), 312-327. https://doi.org/10.1108/JAP-05-2025-0019

ABSTRACT Purpose Acquired brain injury (ABI) encompasses any injury to the brain that occurs after birth and impacts an estimated two million people in the UK. The invisible deficits associated with ABI can leave individuals at risk from a range of safeguarding issues including abuse, neglect and self-neglect. The purpose of this study is to investigate brain injury case managers (BICMs) experiences of raising safeguarding concerns about clients with ABI with local authority statutory services within the UK. Design/methodology/approach Sixty-one BICMs responded to a mixed-methods online survey about safeguarding concerns and practice, with a further seven BICMs being interviewed using a semi-structured approach. Qualitative data were combined across the two stages of study and analysed using thematic analysis. Quantitative data were analysed descriptively. Findings On average BICMs reported 17.72 safeguarding concerns raised about their clients with ABI within the 12-month period prior to data collection. All respondents stated that safeguarding concerns were directly linked to their clients’ cognitive and behavioural impairments. Safeguarding concerns related to psychological, emotional and financial factors. The qualitative data identified a “lack of understanding of ABI”, “absence of information sharing and communication”, “failure to assess mental capacity” and poor “safeguarding training” within statutory services led to inadequate response to safeguarding concerns. Addressing these factors could lead to “improved client outcomes”, such as improved wellbeing and reduced levels of abuse and/ or neglect. Originality/value This study adds to the increasing volume of literature highlighting the safeguarding issues associated with ABI but is the first to analyse service data pertaining to safeguarding concerns in this area.