Brain Injury, January 2012; 26(1): 83–94
Differences in social participation between individuals who do and do not attend brain injury drop-in centres: A preliminary study
Brain Inj Downloaded from informahealthcare.com by University of British Columbia on 08/22/12 For personal use only.
A. M. MCLEAN1,2, T. JARUS2,3, A. M. HUBLEY4, & L. JONGBLOED2 1
GF Strong Rehabilitation Centre, Vancouver, BC, Canada, 2Department of Occupational Science and Occupational Therapy, 3CanDo Research Lab, and 4Department of Educational and Counselling Psychology and Special Education, The University of British Columbia, BC, Canada (Received 29 January 2011; revised 10 October 2011; accepted 22 October 2011)
Abstract Objective: To compare social participation for individuals with traumatic brain injury (TBI) 1 year post-injury who attend brain injury drop-in centres (BIDCs) with individuals who do not attend but were identified as potentially benefitting from attending. Research design: Cross-sectional study with 23 individuals attending BIDCs and a comparison group of 19 individuals not attending. Key outcome measures: Community Integration Questionnaire, Social Provisions Scale and Adult Subjective Assessment of Participation. Main results: The comparison group was found to consist of 12 participants who stated that they would attend a BIDC (‘Yes sub-group’) and seven participants who stated that maybe they would attend a BIDC but for the most part were too busy (‘Maybe sub-group’). The BIDC group was found to have statistically significantly higher levels of social participation than the comparison group and particularly the ‘Yes sub-group’. Conclusions: Findings provide support that attendance at BIDCs may benefit social participation. Future directions for research are suggested. Keywords: Traumatic brain injury, community integration, leisure, quality-of-life, social reintegration, community-based rehabilitation
Introduction Traumatic brain injury (TBI) is a major health issue [1] with an estimated 43% of individuals hospitalized with TBI experiencing long-term impairment and disability [2]. As few as 30% of individuals who were employed prior to TBI are successful in returning to work following TBI [3]; thus, leisure and social activities become important aspects of everyday life for individuals with TBI. However, a high proportion of individuals with TBI experiences a decline in participation in social and leisure activities [4, 5]. Other areas of concern include social isolation [6, 7], fewer friends [8, 9]
and less social interaction outside of the home and family [5, 10]. It has been suggested that the primary goals of TBI rehabilitation are to improve participation or re-integration into the community [11] and restore quality-of-life [12]. Inpatient rehabilitation alone is not sufficient for achieving successful, long-term community integration [13]. Social participation, defined for this study as involvement in social and leisure activities and within a social network, does not appear to improve simply by passage of time alone [14, 15] and may worsen over time [6, 16]. It appears, therefore, that long-term rehabilitation
Correspondence: Alison M. McLean, MSc, BSc(OT), T-325, 2211 Wesbrook Mall, Vancouver, BC, Canada, V6T 2B5. Tel: 604-737-6210. Fax: 604-737-6259. E-mail:
[email protected] ISSN 0269–9052 print/ISSN 1362–301X online ß 2012 Informa UK Ltd. DOI: 10.3109/02699052.2011.635353
Brain Inj Downloaded from informahealthcare.com by University of British Columbia on 08/22/12 For personal use only.
84
A. M. McLean et al.
therapies and support services are required to assist individuals with TBI in achieving these goals [7, 8]. It may be that, by focusing on social participation, such services can also improve an individual’s subjective quality-of-life (SQOL) or subjective well-being, considering that some studies have found a positive relationship between participation or community integration and SQOL including life satisfaction [9, 17, 18]. There are a number of community interventions and programmes that aim to enhance social participation for individuals with TBI, including support groups [19], peer support [20], case management [13], circles or networks of support [21], day programmes [22], one-to-one volunteer support [23], community leisure groups [24] and community outreach teams [25]. However, the research evidence base for the effectiveness and efficacy of such programmes is in its infancy [26]. More research is required focusing on community-based programmes and services designed to meet the long-term needs of individuals with TBI including their social participation needs [13, 24]. One type of support service that has the potential to be both effective and feasible in addressing social participation is the brain injury drop-in centre (BIDC). A search of the research literature and internet reveals that BIDCs exist in only a few locations including the Canadian provinces of British Columbia, Alberta and Ontario and in the UK. BIDCs, which are located in community settings and not hospitals or health centres, provide formal and informal social and recreational activities, peer support and educational in-services for adults with brain injury. Some BIDCs are open each weekday and others are open one-to-three times per week. A physician’s referral is not required, appointments are not necessary and there is typically no waiting list. Individuals may attend as often or little as they choose and for as long as they like. The expertise of a healthcare professional is not required for operating a BIDC; the individuals who staff BIDCs may have a background in community services or working with individuals with disabilities, but they are not healthcare professionals. A BIDC typically has about one-to-two paid staff for a dozen or more attendees in a day. There are at least eight BIDCs in British Columbia, funded in large part by regional health authorities; however, their number in other regions or countries is unknown. As per the authors’ experience, the advantage of BIDCs is that they may provide a more comprehensive array of services than other long-term support services, such as compared to an adapted exercise programme, an art programme or a support group, each of which focuses on just one type of activity or service. Furthermore, a BIDC may be more cost
effective than other rehabilitation interventions, especially when compared to programmes staffed by healthcare clinicians. A BIDC differs from the Clubhouse model in that the primary focus of a BIDC is participation in social and leisure activities, whereas a Clubhouse is structured around meaningful work. In a Clubhouse, operating hours parallel a typical working day; members volunteer for tasks that support the operation of the Clubhouse such as preparing lunch, participating in hiring of staff and advocating for brain injury services in the community; and some assistance is provided to members for return to paid or unpaid work [27]. Published TBI research about the effects of attendance at a Clubhouse has focused on return-to-work outcomes [28]. No published research findings were found relating the Clubhouse model and outcomes for social participation. Despite the potential for improved social participation for individuals attending BIDCs, one is unaware of any systematic investigation of outcomes for such individuals. It is important to understand the unique contribution of BIDCs in meeting the ongoing needs of individuals with TBI, particularly with respect to the primary rehabilitation goals of improving participation and quality-of-life. Such research is necessary to understand the utility of current BIDCs and also to help service providers and funders in deciding whether or not to establish a BIDC in other communities. Objectives The aim of this study was to examine (a) social participation in individuals with moderate-to-severe TBI who do and do not attend a BIDC and (b) the level of importance of a BIDC for individuals who do attend. It was hypothesized that individuals who attend a BIDC will have higher levels of social participation than individuals who do not attend and that individuals who do attend will ascribe high importance to BIDCs in their lives.
Methods Participants This study recruited 23 participants who attend a BIDC and 23 individuals who do not attend a BIDC. The BIDC group was recruited through BIDCs, through BIDC staff, posters and presentations at the BIDCs. The Comparison group was recruited through community-based case managers, healthcare clinicians and service providers who thought the person may benefit from attending a BIDC. Reasons for not attending included not knowing about BIDCs or the existence of a barrier
Brain Inj Downloaded from informahealthcare.com by University of British Columbia on 08/22/12 For personal use only.
Brain injury drop-in centres to attendance such as lack of transportation or living too far from a BIDC. Participants needed to meet the following inclusion criteria: aged 19–65 years, sustained a moderate-tosevere TBI at least 1 year prior, lives in the community, fluent in English and able to provide informed consent. Moderate-to-severe TBI was determined by information provided by the participant or his/her clinician demonstrating at least one of the following [29]: an initial Glasgow Coma Scale of 12 or less, post-traumatic amnesia of 1 hour or more and/or loss of consciousness of more than 15 minutes. If no information was available for these measures, then hospitalization of at least 48 hours as related to the TBI [30] provided sufficient evidence for the purposes of this study. Individuals were excluded if they had aphasia or were otherwise unable to complete questionnaires, were currently working, were currently doing volunteer work for more than a few hours per week, were currently involved in a formal rehabilitation programme or had an Axis I psychiatric diagnosis [31] (other than mild-to-moderate depression). Individuals were also excluded if they showed severe depressive symptomatology, as evidenced by an index score of 0.70 or greater on the Zung SelfRating Depression Scale [32]. Individuals for the BIDC group were included if they had been attending a BIDC on average at least once per week over the previous 3 months. Individuals in the Comparison group were deemed ineligible if they had made more than three visits to a BIDC over the previous 6 months. Study design A cross-sectional design was used. Each participant met with an assessor—either the researcher (first author) or the research assistant, both registered occupational therapists—to complete the consent form and all of the measures. A friend, family member or caregiver could be present; 13 out of 46 participants chose this option. The assessor read out loud the instructions for each measure and ensured that the participant understood the instructions prior to proceeding. For the self-report questionnaires, participants were provided with the option of reading the items on their own or having the items read out loud by the assessor. Questionnaires were presented in the same order for every participant. Quality of data was enhanced by checking for missing responses during the session and verifying information with a friend, family member, caregiver or the participant’s day timer/calendar. Short breaks were provided as requested by the participant or if the assessor observed the participant to show signs of physical discomfort, fatigue or onset of difficulties with concentration.
85
Thirty-three participants (71.7%) completed all measures in one session, 11 individuals (23.9%) required two sessions and two participants (4.3%) required three sessions; for each participant, all sessions were completed within a 2-week period. Participants required an average of 2.78 hours (range ¼ 1.75–4.67 hours) to complete all of the measures, with no single session lasting more than 3.25 hours (including at least one 10–15-minute break). Inter-rater reliability and procedural consistency were enhanced by the assessors meeting, prior to any data collection, to review all of the questionnaires, procedures and scoring. Then, for the first two participants, one assessor administrated all of the measures while the other assessor observed (alternating between the two sessions), so that any issues relating to procedure could be discussed. Ethical approval was provided by the Behavioural Research Ethics Board of the University of British Columbia and the relevant health authorities. Written information about the study was provided to, and written consent obtained from, all participants. Participants were provided with a small monetary compensation for their participation in the study. Measures A summary of the measures used is provided in Table I. The following measures were used to describe the sample. A short questionnaire was developed and used to collect demographic, socioeconomic and medical information. Individuals also rated their overall health using the General Health Question from the Short Form-36 Health Survey (SF-36 GHQ) [33]. The GHQ has good test–re-test reliability [34] and the full SF-36 has been found to have good concurrent validity for individuals with TBI [35]. Two measures were used to characterize participants in terms of their cognitive function. The performance-based Montreal Cognitive Assessment (MoCA) [36] has been found to have good internal consistency and high test–re-test reliability [36] and validation studies are underway with an acquired brain injury population [37]. The self-report Frontal Systems Behaviour Rating Scale (FrSBe) [38], which provided more in-depth assessment of frontal lobe functions, has demonstrated high internal consistency and good test–re-test reliability and construct validity [38, 39]. The Zung Self-Rating Depression Scale (SRDS) [32] has demonstrated high test–re-test reliability, fair internal consistency and good convergent validity with other depression measures [40]. The Adjustment Scale from the Mayo Portland Adaptability Inventory, version 4 (MPAI-4) was used to collect information about the
Social participation
Participant characteristics
Category
Cognition (visuospatial/ executive function, attention, memory, language, abstraction, orientation) Cognition (apathy, disinhibition, apathy)
Depressive symptoms
Pain, fatigue, emotional and interpersonal adjustment
Montreal Cognitive Assessment (MoCA)
Zung Self-Rating Depression Scale (SRDS)
Mayo Portland Adaptability Inventory (MPAI-4), Adjustment Scale
Frequency of social and leisure activities; nature of social supports Dimensions of perceived social support Dimensions of participation in social and leisure activities
Community Integration Questionnaire, social integration scale (CIQ-SI) Social Provisions Scale (SPS)
Adult Subjective Assessment of Participation (ASAP): social and leisure activities
Frontal Systems Behaviour Rating Scale (FrSBe)
Demographics and injury characteristics General health perception
Construct measured
Study-specific questionnaire SF-36 General Health Question
Measurement tool
Subscales or scores
Diversity: 0–100% Frequency: 1–7 Enjoyment: 1–6 Satisfaction with performance: 1–6 With whom (others): 0–100% Where (outside of home): 0–100%
Total score: 24–96
Social integration scale: 0–12
T-score: 0–100 (M ¼ 50, SD ¼ 10)
Total index score: 0.25–1.00
Age- and education-corrected T-score: 0–100 (M ¼ 50, SD ¼ 10)
Total score: 0–30
Total score: 1–5 (excellent to poor)
Table I. Measures used.
Brain Inj Downloaded from informahealthcare.com by University of British Columbia on 08/22/12 For personal use only.
