A research project was conducted recently by the University of Queensland to find out how people with a brain injury feel about the long-term community-based support they receive.

Tamara Ownsworth
PhD Clinical Neuropsychology
Division of Occupational Therapy
The University of Queensland

It is well known that acquired brain injury has long lasting effects. People’s lives can change dramatically in many ways relating to their ability to work, live independently, access the community and maintain relationships. As most people are aged less than 25 years when they sustain their injury many will require support for 50 years or longer. While there are various transitional services that focus upon supporting people to achieve particular goals (e.g., work and driving), a significant number also require ongoing or lifetime support.

Despite the clear need for people to have access to long-term community-based support, very few people have access to such services. The Acquired Brain Injury Client Integration Service (ABICIS) is one of the few services in Australia that specialises in providing long-term community-based support to people with acquired brain injury. ABICIS provides long-term support to approximately 20 individuals with support workers and case managers on a fee-for-service basis. The clients of this service typically have a severe brain injury and many experience psychiatric or medical conditions. The level and type of ongoing support from ABICIS varies for each individual and ranges from minimal contact to 24 hour support.

A number of research studies have examined the benefits of community-based rehabilitation or support. However, the way people feel about the support they receive and whether they feel that their support needs are being met has been neglected. The present study conducted by a clinical neuropsychologist and occupational therapists from the University of Queensland aimed to explore the following questions:

• What do people with a brain injury perceive their long-term support needs to be?
• What changes, if any, would people like in the support they receive? And
• How do the views of people with a brain injury compare to the views of their relatives and case managers?

PARTICIPANTS

Participants in this exploratory study involved eight individuals supported by ABICIS and a relative and case manager for each individual. Ethical clearance was obtained prior to inviting the individuals to participate in the study. Two female individuals and six males participated whom were aged 20-48 years and received support ranging from 3 hours to 70 hours per week. The individuals met with the researchers on three occasions; firstly to provide their informed consent, secondly to participate in the study, and finally for the individuals to check that their comments during the interview were accurately understood by the researcher. The relatives and case managers were involved in the same interview process and all participants provided opinions about the individuals’ current support needs and any recommendations for change. Opinions were sought about their need for support with personal and home-based activities, community access, self-organisation, vocational activities and social and psychological well-being.

FINDINGS

The most consistently identified area of support by the individuals, relatives and case managers related to accessing the community. The need for support to attend appointments was identified by 100% of participants. The value of this support is highlighted by the following comments by two individuals with a brain injury:

‘These people understand what I’ve been through and what I need’.

‘I’m normally there on time at appointments… (support workers provide) verification of what is said and what is not’.

Other areas of community access in which most participants felt support was needed involved grocery shopping, travelling around the community and going to leisure and social activities. Participants generally identified that community access was the most important area of support and also one of the most effective types of support received.
Compared to relatives and case managers, individuals were generally less likely to perceive that they needed support with personal and home-based activities, self-organisation, vocational activities and social and psychological well-being. Some exceptions, in which individuals often recognised the need for support, involved preparing meals, cleaning the house, managing finances and support when feeling upset.

There were some interesting differences in how relatives and case managers perceived the need for support with relationships compared to individuals. Most relatives felt that individuals needed support to form and maintain relationships. In particular, one relative appeared concerned about the people the individual spent time with.

‘He tends to attract the wrong types; people who tend to make use of him and steal from him and rip him off. These people are attracted to him because of his condition’.

Another relative identified that an individual needed to be supervised when socialising due to his behaviour and acknowledged that this reduced his independence.

I am his mother – I’m sure he would love to go out with a group of guys, but I restrict what he is able to do… because of his behaviour you have to restrict it’.

One of the case managers expressed concern about particular individuals becoming socially isolated. However, in the past when an increase in the level of support (e.g. to attend more social activities or meet friends) had been offered these individuals had resisted this. Such comments suggested that individuals might find it difficult to acknowledge the need and accept support in this area of forming and maintaining relationships.

One individual who recognised that he experiences difficulty in this area, felt that there was a limit to what support could achieve in helping him to form and maintain relationships. He stated: ‘They don’t have to carry it out to the end – it’s me that’s got to do that’.

A number of issues appeared to influence the areas of support in which individuals, relatives and case managers felt that support was needed. Individuals typically perceived that support was needed if they felt that they lacked skills or independence in a particular area (e.g. cooking or driving). Relatives and case managers recognised that the individuals’ cognitive limitations (e.g. memory problems, reduced initiation, insight, poor planning and decision-making) were a main issue underlying the need for support in many areas. All participants recognised that a lack of relationships, or negative relationships (e.g. conflict with family or friends), influenced the need for support in various aspects of life.

Individuals and case managers often recognised that an individuals’ choices (i.e. their own goals and acceptance of support) were important in determining the need for support while some relatives placed more priority on safety and health considerations. This finding highlighted that it can be difficult to balance the individual’s need for independence with their need for supervision. Some issues underlying support needs that were not identified for all individuals, but appeared to be particularly important for some, involved the following:

• Substance abuse
• Mental health
• Behavioural issues (e.g. aggression and inappropriate sexual behaviour)
• Communication
• Hygiene
• Physical limitations (i.e. mobility).

The highest number of changes identified by all participants related to the area of community access. Therefore, although this area of support was considered the most effective, it appears that there is a need for ongoing improvements and flexibility in this priority support area. Specific changes identified by individuals involved increased support (e.g. more reminders or visits), different types of community outings (e.g. to a night club), reduced support and/or more independence (e.g. greater control over personal finances and increased involvement with cooking). Some individuals recognised the need for increased support to provide relief to their family, as follows:

‘Different people outside the family to take the pressure off mum so I don’t feel like such a burden’.

Some individuals did not identify a specific change in the support, but recognised a desire for a general change in their circumstances. This included the comment: ‘I’d like my life to be a better life’ and the desire for relationships (e.g. more female company or to have a girlfriend). Therefore, although individuals typically did not identify the need for support to form and maintain relationships it was clear that many wished for an improvement in this aspect of their life.

The changes in support suggested by relatives included increasing hours of support in specific areas, providing relief for relatives, refocussing support hours (i.e. more emphasis placed on particular activities and less in other areas), improving natural support networks (e.g. opportunities to develop friendships), having access to other services (e.g. counselling) and reducing the costs of support. Examples included the following:

‘We are concerned that we are getting older; could someone else take over the role of noticing when things need to be done and reminding him?’

‘If we had something called ‘circle of friends’ where a group of friends are built up around a disabled person – that would be great’.

The most common support changes suggested by case managers involved increasing an individual’s independence (e.g. supporting an individual to use public transport), increasing the variety and choices for social activities, enhancing natural support networks, reducing support costs and improving access to a range of other services. In relation to greater access to other services, a case manager made the following comment:

‘A lot of the support needs to be better crisis management…. We have experienced difficulty referring to specialised services, the two main ones are drug and alcohol and mental health services. He’s excluded because of alcohol and his past history with services. Because of his Acquired Brain Injury they say it’s an organic problem’.

CONCLUSIONS

One of the main findings of the study was that community access is a priority support need for all individuals. This aspect of support was viewed as important to assist individuals’ orientation to their community (i.e. knowing one’s way around) and transportation. However, it was also recognised that support with community access helped to prevent loneliness and social isolation. Another key finding is that although most individuals did not want support in forming and maintaining relationships, many desired an improvement in this aspect of their life. This finding suggests the need to develop more naturalistic opportunities for individuals to develop relationships without direct support. These opportunities need to be structured in a way that is minimally intrusive and more acceptable to individuals. Further research is needed to develop and evaluate interventions for enhancing natural support networks following Acquired Brain Injury.

Overall, the findings of this preliminary study underscore the need for more individuals with Acquired Brain Injury to have access to long-term specialist services such as ABICIS to assist with community access and other specific lifestyle support needs. Additional services that need to be coordinated with individuals’ lifestyle support plans include mental health and substance abuse management and assistance with vocational, social and leisure goals. Future research needs to examine the perceptions of support for other individuals with brain injury, who receive support from different services or their relatives only, to gain greater understanding of individuals’ long-term support needs and the extent to which their support needs are being met.


The researchers would like to express their sincere thanks to the individuals, relatives and case managers who participated in the study. Thanks to Tamara Ownsworth for her kind permission to print this article.