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The partner's experience of traumatic brain injury and its recovery

Tue 17 Oct 2017

Research looks at the experiences of partners of brain injury survivors. 

Research by Dr Gerard Riley looks into the impact of brain injury on partners. Here is a summary of his findings. 

Traumatic brain injury (TBI) can be very stressful for spouses and partners.  Their emotional well-being and their relationships can suffer. This article gives a summary of some recent studies that have investigated what it is like for them having to deal with a TBI.  

When the TBI first occurs, partners are often in shock, and fearful about what will happen.  During the person’s stay in hospital, relationships with hospital staff can sometimes be difficult.  Some partners report feeling angry and frustrated with the hospital system, and disappointed with the lack of therapy.  When the hospital stay is long, partners may end up overwhelmed and exhausted as they try to juggle hospital visits with other demands such as looking after children and working.

Many partners have mixed feelings about discharge from hospital.  On the one hand, there can be a sense of relief that the person is finally home, and optimism for the future.  On the other, the partner may become increasingly aware of how disabled the person with the TBI is, and worried about how they will all cope.  Some partners also report feeling abandoned by services as they realise the limited nature of community rehabilitation and support.

Many things contribute to the stress of living with TBI in the longer term.  Partners are often burdened with extra demands on their time and energy:  As well as providing care and support for the person with the TBI, they may have extra responsibilities (e.g. childcare, household finances) because the person with the TBI can no longer be relied on to do these things.  Finances can be a worry as family income is lost.  Behavioural and personality changes, such as aggression and lack of motivation, can be very stressful and upsetting to deal with.  Many partners neglect their own needs and interests as they are forced to give up their employment, social activities and leisure time.

Social relationships can also suffer.  The person with the TBI can feel like a stranger to the partner, and the relationship can feel more like a parent-child relationship than a marital one.  Marital love can be replaced by other feelings such as those associated with protecting and caring, or, in some cases, outright dislike.  Sexual intimacy can suffer because of these changes.  Many partners feel ambiguous about staying in the relationship.  Relationships within the immediate family, the wider family circle, friends and the wider community can also be damaged.  Some partners end up feeling lonely and isolated.

The experience of living with a TBI is, of course, not the same for everyone.  For example, some partners have very good relationships with hospital staff, some cope effectively with personality changes, and not everyone’s family relationships suffer.  Likewise, not all experiences of TBI are negative.  Some appreciate the opportunity of helping someone they love, and get a lot of satisfaction from seeing them make progress. Some describe how they themselves have grown as a person, with more confidence and resilience, and a greater appreciation of what life has to offer. In some cases, relationships with the person with the TBI, with the family and with friends are strengthened, not weakened.   

Reference: Riley, G.A. (2016). The partner's experience of traumatic brain injury and its recovery.Concussion, 1 (3).


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