There is often limited support available to meet the needs of family members and to support the critical role they play in the rehabilitation and care of their relative. BABICM (British Association of Brain Injury and Complex Case Management) supports case managers’ understanding of this area of work and facilitates all opportunities for research.

In this latest article, Mark Holloway, one of BABICM’s Advanced Registered Practitioners details his recent research surrounding the family experience of ABI and associated services, and describes how this work developed in producing a book for family members and clinicians. Further consideration is given on how this type of research can increase knowledge and influence future clinical practice.

It does not take huge imagination to recognise that an ABI to a loved one has a significant impact on wider family and friends.

Whilst every person and every family is different, the stories families tell us often have some common threads: the shock of first hearing the news of the injury, being thrust into the unfamiliar world of hospitals and the slow realisation that life will never be the same.

Family members are therefore themselves affected by the impact of ABI upon their relatives and, as stated above, they play an important role in the rehabilitation and long-term support required.

Research in this area aims to understand how families are impacted and what are their needs?

For his own doctoral research, Mark employed a mixed-methods design to capture the lived experience of family members of people with ABI.

The results of the quantitative and qualitative data were triangulated against the literature.

The quantitative element of the research identified strong correlations between the relative’s assessment of the invisible impairments suffered by those with an ABI (cognitive, executive, behavioural and emotional difficulties) and lack of insight.

This correlation was not present in relation to physical impairment. It was observed that increased loss of insight and behavioural difficulties were strongly correlated with loss of friendships by the non-injured family member.

The results of the qualitative element of the research identified that family members’ experience is complex and enduring, encompassing most aspects of life, and is affected by the context in which it occurs as well as by formal and informal support structures.

The particular nature of the grief and loss experienced by families is ambiguous, develops over time and leads to ambivalent feelings for family members who perceive no option but to remain involved.

Informal and formal support frequently fails to take account of the reality and complexity of the condition and fails to integrate the relative by recognising their own losses and trauma.

Relatives’ views on the services received identified significant gaps in practitioner knowledge, most especially of those aspects of life that were of most concern to them, the invisible impairments and issues with insight.

Practitioners that were valued were more likely to be specialists in the condition and practiced as “expert companions” supporting the relative to develop a new “neuro-narrative” to reconstruct their identity in the face of their ongoing grief.

During the process of this research, family members reported that they rarely had the opportunity to tell their whole story, for the focus to be upon them and their hard-won wisdom.

From this sprang an idea, to collate in a book those stories.

Family Experience of Brain Injury: Surviving, Coping, Adjusting therefore showcases a unique collaboration between relatives of brain injured individuals and professionals from the field of neurorehabilitation.

Family members from all different viewpoints tell their story and how the brain injury of a loved one has affected them.

The intention of the book is to provide a space for those hidden and marginalised voices, the people who are in for the long haul, often dismissed by services and left to cope in isolation.

By combining expert commentary with real life experiences, the book points towards sources of support, normalises the experience and provides a context for understanding the grief and losses of family members.

It is hoped that not only will the hard-earned knowledge and wisdom evident in this book help educate health and social care staff, it also highlights how love, commitment, hope and perseverance, against a seemingly unbearable grief, can remain.

Greater understanding of the complex lived experience of family members may support more effective responses to both them and the individual with ABI, integrating services and families to improve quality of life.

As ABI is a process with changes to functioning developing over time, the information and knowledge required by loving and supportive relatives needs to be created with them, being person, family, injury and context-specific.

*(Clark Wilson, J., and Holloway, M. (2019) Family Experience of Brain Injury: Surviving, Coping, Adjusting, 1st Edition Routledge. ISBN 9781138896697)

Research call for all case managers

BABICM is strongly aware that those working with people with brain injury have a plethora of clinical narratives and experiences that could be progressed into documenting such shared knowledge; however, most feel that this is beyond their skill set or remain incognisant of the qualitative value of their experience.

BABICM Research Group is looking to explore how to capture these untapped narratives and promote the increased collaboration between academic research and clinical practice.

BABICM is excited to announce the launch of its latest research project in association with Plymouth University, entitled, ‘Whose Outcome Is It Anyway?’.

The organisation is exploring its membership’s understanding and experiences with outcomes in case management practice.

This is circulating through the BABICM membership, with all case managers being encouraged to participate in the project survey.

BABICM will be providing updates on this research project, along with the outcome of other innovations to increase sharing of narratives, in future NR Times editions, so watch this space!