Dear Editor: it is common to talk about patients with acquired brain injury (ABI) and their families without taking into account their complex and diverse previous histories and the links that may exist between these histories and how the illness is experienced. In our clinical work, we have noticed that how patients and their families deal with the ABI is also linked to their earlier life experiences (difficult or positive events) and to family history, sometimes over several generations.
Family trajectories in France today are diverse, because of the various events occurring in the lives of each person, historical events, and the socioeconomic changes that have characterised the 20th century.
Existing studies describe the previous personality of patients with ABI, their psychiatric history, their previous behaviours, their psychic structure, or their psychosocial characteristics and the role of these factors in behavioural disturbances, prognosis or the origins of the head trauma or stroke . Certain studies have explored the impact of a single life event on the emergence of psychiatric pathologies associated with the consequences of the brain injury . However, none have taken an interest in the parallel impact for patients and family members of individual and family history and life events on their respective experiences of ABI.
In this study, we first investigated certain characteristics of family histories and their complexity about which ABI patients and their families do not readily talk. Then we aimed to cast light on the subjective perceptions of patients and families of the interactions between their family histories and how they dealt with the brain injury. We hope to contribute to a better knowledge of the “personal” factors involved in the disability.
1
Methods
This was an in-depth qualitative study with a psychodynamic and phenomenological approach, thus inevitably involving only a small but adequate population, obtaining results that can be generalised but that are not representative in the statistical sense. It used recognised methods implemented in qualitative studies in the area of health . The issue was not to compare the family history of brain-injured patients with that of a general population sample, so we did not include a control group. Although the cognitive deficits of the patients naturally affected some of their responses, the aim of the study was not to study precise correlations in this area.
The study involved 19 adult patients with ABI (head trauma, stroke or cerebral anoxia) with sequellar disability (Glasgow Outcome Scale 5, 4 or 3) and one family member for each (8 spouses, 4 parents, 3 children, 3 siblings, 1 aunt). Their characteristics are in Tables 1 and 2 . The patients were recruited by professionals in the Île-de-France Association Réseau Traumatisme Crânien, which gathers facilities and professionals dedicated to ABI patients. Exclusion criteria were insufficient command of the French language, severe communication difficulties and massive retrograde and autobiographical amnesia. The family member (main caregiver) was indicated by the professional who assessed the patient or the patients themselves.
| Gender | Age, y | Marital status | Profession (present or previous) | Place of birth | ||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Male | Female | < 30 | 31–60 | > 60 | Single | Divorced/widowed | Living with partner | With children | Worker | White-collar | Teacher | Managerial | Independent profession | Unemployed | Student or trainee | France | America | Africa | Other | |
| Patients | 11 | 8 | 7 | 5 | 4 | 7 | 4 | 8 | 8 | 2 | 4 | 1 | 4 | 1 | 3 | 4 | 14 | 0 | 2 | 3 |
| Family members | 3 | 16 | 8 | 7 | 4 | 1 | 3 | 15 | 13 | 3 | 4 | 1 | 7 | 3 | 0 | 1 | 10 | 2 | 4 | 3 |
| Etiology of the brain injury | |
| Traumatic brain injury | 9 |
| Stroke | 9 |
| Anoxia | 1 |
| Time since injury | |
| < 6 months | 1 |
| 6 months to 5 years | 15 |
| > 5 years | 3 |
| Seriousness of sequellar disability | |
| GOS 5 | 4 |
| GOS 4 | 11 |
| GOS 3 | 4 |
| Neurological sequelae | |
| Motor impairments | 14 |
| Swallowing disorders | 1 |
| Oculo-motor impairment | 1 |
| Post-traumatic epilepsy | 5 |
| Cognitive disturbances | |
| Temporal disorientation | 1 |
| Spatial disorientation | 11 |
| Aphasia | 6 |
| Memory impairments | 11 |
| Attention deficits | 15 |
| Executive disorders | 13 |
| Visuo-spatial disorders | 5 |
| Praxic impairments | 1 |
| Behavioural disturbances | |
| Apathy | 8 |
| Impulsiveness | 8 |
Separate semi-directive interviews lasting 1 hour were proposed to each patient and family member. The following were explored:
- •
perceptions of happy or unhappy life events experienced by the patient or family member, considering family history over 3 or 4 generations;
- •
perceptions by the patient and family member of the place of the present brain injury in their personal and family histories;
- •
perceptions of the impact of the family history on the ability to deal with the illness and the ability of family members to provide support for the brain-injured person.
Each interview was recorded and the verbatim transcribed, then analysed separately by 2 researcher-clinicians, a psychiatrist and a psychologist with psychoanalytic training (HO-G, PdC). Content analysis of the interviews, conducted as is usual in the human sciences, thus enabled “significant elements” to be pinpointed . The semi-directive interview guide was developed from research of a similar nature conducted among parents of children with cancer . It was also based on our working hypotheses and backed up by an inductive method recommended in “grounded theory” , as was the analysis of results. A consensus between clinicians was required to conclude the presence or absence of a given “significant element”.
2
Results
Confrontation with the brain damage was frequently not the first difficult life event ( Table 3 ). The events experienced were numerous, both happy and unhappy. All had their importance: most were painful separations in adulthood, a serious illness affecting the respondent or family, separations in childhood, the tragic death of a parent or relative, repeated deaths, as well as births and professional successes ( Table 3 ). Most of the 19 patients and 19 family members had an individual or family history involving displacements from one region or country to another ( Table 3 ). Slightly less than half of these interviewees described breaks with the original environment (socially or geographically) in their personal or family history ( Table 3 ). A large number of patients ( n = 11) and family members ( n = 13) mentioned fragmentation, distancing or breakdown of family ties ( Table 3 ).
| Patients | Family members | |||
|---|---|---|---|---|
| Significant elements | Yes | % | Yes | % |
| Information | ||||
| Life events and family history | ||||
| In the interview only difficult life events in the past are described | 4 | 21% | 4 | 21% |
| The illness is not the first difficult life event for the person | 17 | 89% | 19 | 100% |
| The events described in the interview | ||||
| Repeated deaths in the family | 7 | 37% | 9 | 47% |
| The tragic death of a parent or family member | 7 | 37% | 10 | 53% |
| The repetition of the same death over several generations | 3 | 16% | 4 | 21% |
| Separations in childhood | 8 | 42% | 12 | 63% |
| Painful separations in adulthood | 10 | 53% | 8 | 42% |
| Ill-treatment | 1 | 5% | 1 | 5% |
| Rape | 1 | 5% | 1 | 5% |
| Illness causing upheaval for the respondent or family | 11 | 58% | 12 | 63% |
| Historical, political and social events of collective nature | 8 | 42% | 7 | 37% |
| Births and other positive life events | 13 | 68% | 15 | 79% |
| In personal or family history there were exiles or moves from one country or region to another | 13 | 68% | 10 | 53% |
| In personal or family history there were breaks with the original environment | 8 | 42% | 9 | 47% |
| Family ties and social support | ||||
| Support of family and friends involving | ||||
| The parents | 12 | 63% | 4 | 21% |
| The grandparents | 1 | 5% | 1 | 5% |
| The children | 6 | 75% of patients with children | 7 | 55% of family members with children |
| The grandchildren | 1 | 5% | 0 | |
| The other partner | 8 | 100% of patients with a partner | 9 | 60% of family members with a partner |
| Siblings | 12 | 63% | 6 | 32% |
| The wider family | 6 | 32% | 4 | 21% |
| In-laws | 1 | 5% | 2 | 11% |
| Friends | 10 | 53% | 9 | 47% |
| There is a feeling of isolation in coping with the illness | 7 | 37% | 10 | 53% |
| This feeling of isolation pre-dates the illness | 3 | 16% | 7 | 37% |
| Breakdown, distancing or collapse of family ties and consequences very prominent in discourse | 11 | 58% | 13 | 68% |
| Description in the interview of a cultural gap or differing modes of thought with other family members | 4 | 21% | 5 | 26% |
| Psychopathological aspects | ||||
| Impact of earlier events and family history | ||||
| The interviewee has difficulty talking about personal and family history and the events that characterise it | ||||
| For cognitive reasons | 7 | 37% | 0 | |
| For defensive reasons | 11 | 58% | 3 | 16% |
| Events experienced before the illness were still generating considerable painful affects at the time of the brain injury | 7 | 37% | 14 | 74% |
| When the brain injury occurred, the interviewee was still mourning a close person | 3 | 16% | 8 | 42% |
| Links between the past and the illness | ||||
| Events in past individual and family history aggravate the difficulty of the present situation | 6 | 32% | 12 | 63% |
| The present experience of the illness arouses questionings on family history and “destiny” | 6 | 32% | 7 | 37% |
| The present illness reactivates or compounds earlier difficult events | 10 | 53% | 11 | 58% |
| Other elements have led to breaks in life or have been more painful than the present illness | 4 | 21% | 3 | 16% |
| The interviewee establishes conscious links between past events and the present illness | 8 | 42% | 16 | 84% |
| The interviewee does not establish conscious links, but these past events appear in the course of the interview | 10 | 53% | 3 | 16% |
| The interviewee is able to cite the resources that have enabled him/her to overcome earlier difficult events | 11 | 58% | 16 | 84% |
| The resources on which the interviewee can count at present are the same as those that enabled previous events to be overcome | 10 | 53% | 9 | 47% |
| Experience of happy events in the family history contributes to facing up to the present situation | 9 | 47% | 10 | 53% |
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