“What’s our new normal?”: how people make sense of their partner’s cognitive and emotional difficulties following acquired brain injury

Purpose

Carers of people who sustain an acquired brain injury (ABI) often experience high levels of psychological distress associated with cognitive and emotional sequelae of the condition. For couples, this can often translate into relational issues, including marital dissatisfaction and social isolation. However, the psychological needs of partners of people with ABI are yet to be fully understood. This interpretative phenomenological analysis aimed to explore partners’ sense-making of cognitive and emotional difficulties after ABI and how these difficulties affect their relationship.

Materials and methods

Semi-structured interviews were carried out with six working-age participants.

Results

Five interrelated themes were constructed: (1) The complicated nature of ABI; (2) The exhausting task of taking on the extra cognitive and emotional load; (3) Finding a new relational dynamic; (4) The need to protect; (5) The lack of effective support is isolating.

Conclusions

Uninjured partners dedicated significant time and energy to the sense-making process, typically adopting an exhausting trial-and-error type of strategy. Elements of relational change, ambiguous loss, isolation, adaptation, and working in partnership were also captured. Strong emphasis was placed on the need for post-discharge ABI services to provide individualised ABI-education, mental health advice, and relational support. Implications for future research and clinical practice are discussed.

IMPLICATIONS FOR REHABILITATION

Uninjured partners find acquired brain injury difficulties confusing following the acute phase, and this may persist for years post-injury.

Information should be provided to uninjured partners to help them make sense of acquired brain injury difficulties, but a “one size fits all” approach should be avoided.

The availability of person-centred acquired brain injury services such as neuropsychology, care co-ordination, and case-management can take pressure off uninjured partners.

Rethinking the representativeness of support groups within acquired brain injury charities and organisations and how these are formatted may be useful.