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Changing Family Needs After Brain Injury

Journal of Rehabilitation, Oct-Dec, 1998 by Peter Stebbins, Paul Leung

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Cautions for Interpretation

The findings of the current study provide support of previous research lending credence to the results but several factors must be acknowledged regarding its interpretation. The relatively small sample size and geographic dispersion of respondents limits the generalization of the results.

Second, the brevity of respondent information obtained and lack of identifying information prevented follow-up and an analysis of care giver characteristics. Data on socioeconomic status. ethnicity, family systems, and residential location may also have been useful.

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Third, several respondents reported that their relatives had experienced multiple brain injuries (i.e. secondary causes from epilepsy, transient ischaemic attacks, strokes, motor vehicle accidents). Analytical procedures used in this study were unable to take into account these multiple effects and only used the earliest date of trauma.

Finally, the majority of respondents were recruited from agencies that provide services to clients who did not receive compensation for their injuries. The high number of non-compensable families responding in the sample may have skewed the data on unmet needs, since many of these people do not have the resources to purchase services and supports that compensation would allow.

Summary/Conclusion

According to this study, family members experience changing and expanding needs as time since injury progresses. Family needs expand from medical and professional supports to include social and community supports, as well as financial resources. This `expansion' in family needs (as opposed to a `shift' in needs) has impact on several different areas of service provision and service models.

Given that family members experience higher levels of unmet need as time since injury progresses is often associated with having to negotiate multiple service systems, it would make sense to streamline service delivery. Willer and Corrigan (1994) found that negotiating service systems is a key source of stress and frustration for families. With expansion of requirements as time progresses, it is vital that professionals working in services for people with ABI and their families be aware of the expanding needs and seek to assist them in the process of finding resources.

Awareness and education should not be only restricted to service providers but also extended to policy developers. The need to develop frameworks of service delivery that incorporate the need for services from both medical and social welfare orientated systems throughout the lifespan can empower the family by reducing service complexities and creating easier access to these services. One example of an attempt to address service delivery issues is the development of the model systems for traumatic brain injury rehabilitation (Ragnarsson, Thomas, & Zasler, 1993).

In conclusion, this study highlights the expanding needs that family members experience as time since injury progresses. Increased levels of perceived unmet need as time since injury progresses relate to the complexities of dealing with multiple service models which each have their own agendas and philosophical underpinning (i.e. medical model versus social/welfare model). The enormous task of family members in caring for a brain-injured relative may be made easier if services are dynamic and flexible in terms of addressing actual needs. The ability for service providers to understand and provide resources and supports for expanding family needs will either alleviate or exacerbate levels of unmet need among people who, as Florian et al. (1991) stated, are "coping with one of the most difficult tasks that can confront a family."

Health Care Industry

Changing Family Needs After Brain Injury

Journal of Rehabilitation, Oct-Dec, 1998 by Peter Stebbins, Paul Leung

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