Developing and evaluating an assessment to measure the impact and outcome after acquired brain injury

Abstract

Acquired brain injury can have devastating effects on the person’s ability to participate in the activities and lifestyle of their choice. “I want my life back” is a frequently desired goal after brain injury. Rehabilitation aims to reduce the impact of ensuing impairments and facilitate the person’s return to meaningful activities and roles. Rehabilitation assumes to target those activities relevant to each person that “make life worth living” (1994, p.363). This study describes the development of an assessment instrument to measure the concept of ‘my life’. This has been defined as a person’s lifestyle: the typical way a person lives as expressed by their choice and participation in a wide variety of activities to meet needs in the context of their life (Merriam-Webster Dictionary, 2010; World Health Organisation [WHO], 1946). There is no consensus regarding which assessment might best address the concept of lifestyle after brain injury (Tate, 2010; Unsworth, 2000). The aim of this research was to complete the initial stages of the development of such an assessment. The research was carried out in three stages. Stage 1 of the study focussed on construction of the Lifestyle Assessment, a 72 item criterion referenced measure which acknowledges people are experts in their own life. The International Classification of Functioning, Disability and Health was selected as an appropriate basis for generating the initial items for the new instrument as it was thought to capture the “lived experience” of individuals after brain injury and provided a ready source of relevant items (Cicerone, 2004; Greenwood, 1999; WHO, 2001, p.229). In Stage 2 a qualitative review of the first version of the Lifestyle Assessment by a small number of people with brain impairment and clinicians provided an insider’s view of the utility of the new instrument. These processes informed refinement of the items, rating scale, format and administration of the assessment. The views of both groups were accommodated at this stage of the study. In Stage 3, the Lifestyle Assessment was piloted with 71 people with acquired brain injury. Rasch analysis was used to evaluate the degree to which the assessment was objective, precise and appropriate to measure lifestyle and for people with brain injury. The initial analysis indicated the need for adjustments to the rating scale. After refinement, the data were reanalysed using a modified collapsed rating scale. This stage of the study provided initial evidence of the reliability and validity of this instrument and identified several issues requiring further exploration. People were able to identify which activities were relevant to their life, and these ranged in number and difficulty. Participation in a chosen lifestyle is a complex phenomenon and appeared to be influenced by each person’s capacity, as well as supportive social environments, internal motivation and talent. People with co-morbid diagnoses had additional influences on their participation and this was found to be different than those with brain injury alone. The findings of the study were supported by literature on the nature of participation after brain injury. The Lifestyle Assessment offers a person centred assessment that focuses on Lifestyle. It reflects the ideas that individuals are unique and are able to make their own choices about which activities are important to them. It is a collaborative instrument that accommodates the needs of people with brain injury and clinicians who will use it, and displays elements considered essential to effective assessments. With further development this criterion referenced instrument has potential to make contributions to understanding and measuring the change that occurs in people’s life after brain injury.