Australian Implementation and Evaluation of Active Support

Background The implementation and evaluation of Active Support in Australia is reported, the first such formal evaluation outside the UK. Method Residents and staff of five group homes participated. Active Support was introduced by training staff in one home at a time. Effectiveness was assessed using direct observation of resident engagement in activity and of staff help, as well as written assessments of resident outcomes. Results Staff help and resident engagement increased in four of five group homes. There was significantly greater participation in a wider variety of domestic activities, as well as more frequent and varied community participation. Change in resident engagement was positively related to change in staff help, but not related to residents’ level of adaptive behaviour. Conclusions Most of our findings were consistent with earlier UK studies. There was evidence of the successful transfer of Active Support training skills to an Australian training team. Nonsignificant trends towards reduced depression and increased adaptive behaviour warrant further investigation.     

Leisure Time Physical Activity in a Population-Based Sample of People With Spinal Cord Injury Part I: Demographic and Injury-Related Correlates

Martin Ginis KA, Latimer AE, Arbour-Nicitopoulos KP, Buchholz AC, Bray SR, Craven BC, Hayes KC, Hicks AL, McColl M, Potter PJ, Smith K, Wolfe DL. Leisure time physical activity in a population-based sample of people with spinal cord injury part I: demographic and injury-related correlates.

Objectives

To estimate the number of minutes a day of leisure time physical activity (LTPA) performed by people with chronic spinal cord injury (SCI) and to identify the demographic and injury-related characteristics associated with LTPA in a population-based sample of people with chronic SCI.

Design

Cross-sectional telephone survey.

Setting

General community.

Participants

Men and women with SCI (N=695).

Interventions

Not applicable.

Main Outcome Measures

The number of minutes/day of LTPA performed at a mild intensity or greater.

Results

Respondents reported mean minutes ± SD of 27.14±49.36 of LTPA/d; however, 50% reported no LTPA whatsoever. In a multiple regression analysis, sex, age, years postinjury, injury severity, and primary mode of mobility each emerged as a unique predictor of LTPA. Multiple correspondence analysis indicated that being a man over the age of 34 years and greater than 11 years postinjury was associated with inactivity, while being a manual wheelchair user and having motor complete paraplegia were associated with the highest level of daily LTPA.

Conclusions

Daily LTPA levels are generally low in people with SCI. Women, older adults, people with less recent injuries, people with more severe injuries, and users of power wheelchairs and gait aids are general subgroups that may require special attention and resources to overcome unique barriers to LTPA. Specific subgroups may also require targeted interventions.     

Everyday physical activity and community participation of adults with hemiplegic cerebral palsy

Purpose. To assess the level and potential determinants of everyday physical activity and participation in various life areas of adults with hemiplegic cerebral palsy (CP) in comparison with healthy subjects.

Method. In a cross-sectional study everyday physical activity was measured (Activity Monitor) in 16 adults with CP, aged 28 (3) years, and 16 age/gender matched healthy volunteers, aged 29 (3) years. Participation was assessed by means of validated questionnaires. Age, gender, body fat (skinfold thickness), muscle tone (Ashworth Scale), functional level and participation were assessed as potential determinants of everyday physical activity.

Results. In adults with CP mean (SD) duration of dynamic activities during a day (10.6 [3.5]%) was comparable to healthy subjects (11.2 4%) (p = 0.66). In most life areas the level of participation was comparable for both groups, although adults with CP spent more time on non-intensive leisure activities. Participation in sports appeared to be a determinant of everyday physical activity in both groups.

Conclusions. The results indicate that the levels of everyday physical activity and community participation in adults with hemiplegic CP are comparable to levels in healthy comparison subjects.     

From patients to teachers: the perspectives of trainers with aphasia in a UK Conversation Partner Scheme

Background: The importance of addressing the long-term needs of stroke survivors is emphasised in recent strategy and guideline documents, with community re-engagement and participation seen as particularly important. In recent years there has been a growing interest in stroke survivors with aphasia becoming involved as trainers in Conversation Partner Schemes (CPSs). There is little research into the experiences of people with aphasia being involved in or developing this “expert” role.

Aims: This study explored the experiences of aphasia trainers in a UK CPS in order to develop an understanding of how “aphasia expertise” was understood and whether participation addressed long-term issues implicit in living with aphasia.

Methods & Procedure: A qualitative approach was adopted involving semi-structured interviews with eight Conversation Partner Trainers, four males and four females, with a range of mild to severe aphasia. All except one trainer was of working age when they had their stroke. Interviews were transcribed and subject to thematic analysis.

Outcomes & Results: Three themes were produced through thematic analysis: Informal communication practice, Social re-engagement, and Interpersonal connections. Participants spoke about being motivated to improve their own and others’ communication skills, gaining a sense of purpose, achievement, and self-worth through their participation as a trainer. Deploying their expertise was seen as a way of “giving back”, addressing the effects of social isolation, and reconnecting to their previous self.

Conclusions: Becoming involved as a trainer in a CPS gave these participants an opportunity to feel they had a meaningful purpose. This has wider implications for trainers’ currently living with aphasia in regard to their sense of reclaiming, maintaining, and constructing their identity, and for future services for people with aphasia.     

Defining social inclusion of people with intellectual and developmental disabilities: An ecological model of social networks and community participation

Social inclusion is an important goal for people with intellectual and developmental disabilities, families, service providers, and policymakers; however, the concept of social inclusion remains unclear, largely due to multiple and conflicting definitions in research and policy. We define social inclusion as the interaction between two major life domains: interpersonal relationships and community participation. We then propose an ecological model of social inclusion that includes individual, interpersonal, organizational, community, and socio-political factors. We identify four areas of research that our ecological model of social inclusion can move forward: (1) organizational implementation of social inclusion; (2) social inclusion of people with intellectual and developmental disabilities living with their families, (3) social inclusion of people along a broader spectrum of disability, and (4) the potential role of self-advocacy organizations in promoting social inclusion.     

Participatory citizenship: Critical perspectives on client-centred occupational therapy

Abstract

Background/aims: This article aims to discuss client-centred practice, the current dominant approach within occupational therapy, in relation to participatory citizenship. Occupational therapists work within structures and policies that set boundaries on their engagement with clients, while working with complex, multidimensional social realities. Methods: The authors present a critical discussion shaped by their research, including a survey, discussions at workshops at international conferences, and critical engagement with the literature on occupational therapy, occupation, and citizenship. Conclusion: A focus on citizenship suggests reframing professional development based on the participation in public life of people as citizens of their society. While occupational therapists often refer to clients in the context of communities, groups, families, and wider society, the term client-centred practice typically represents a particular view of the individual and may sometimes be too limited in application for a more systemic and societal approach. Significance: The authors question the individual focus which has, until recently, been typical of client-centred occupational therapy. Placing citizenship at the core of intervention is a transformative process that assumes all people are citizens and conceives of health as a collective issue, influencing the way we educate, do research, and practise.     

Does implementing a development plan for user participation in a mental hospital change patients' experience? A non‐randomized controlled study

Background

Governments in several countries attempt to strengthen user participation through instructing health‐care organizations to implement user participation initiatives. There is, however, little knowledge on the effect on patients'' experience from comprehensive plans for enhancing user participation in whole health service organizations.

Objective

To investigate whether implementing a development plan intending to enhance user participation in a mental hospital had any effect on the patients'' experience of user participation.

Design, setting and participants

A non‐randomized controlled study including patients in three mental hospitals in Central Norway, one intervention hospital and two control hospitals.

Interventions

A development plan intended to enhance user participation was implemented in the intervention hospital as a part of a larger reorganizational process. The plan included establishment of a patient education centre and a user office, purchase of user expertise, appointment of contact professionals for next of kin and improvement of the centre''s information and the professional culture.

Main outcome measures

Perceptions of Care, Inpatient Treatment Alliance Scale and questions made for this study.

Results

A total of 1651 patients participated. Implementing a development plan in a mental hospital intending to enhance user participation had no significant effect on the patients'' experience of user participation.

Discussions and conclusions

The lack of effect can be due to inappropriate initiatives or challenges in implementation processes. Further research should ensure that initiatives and implementation processes are appropriate to impact the patients'' experience.     

Contextualizing the findings of a systematic review on patient and carer experiences of dementia diagnosis and treatment: a qualitative study

Background

Involving service users in the systematic review process is seen as increasingly important. As systematic reviews often include studies from diverse settings and covering a time span of several decades, involving service users in consideration of applicability to specific populations or settings might make reviews more useful to practitioners and policymakers.

Objectives

To test and contextualize the findings of a systematic review of qualitative studies looking at patient and carer experiences of diagnosis and treatment of dementia.

Methods

Results from the systematic review were discussed in focus groups and semi‐structured interviews with patient, public and professional participants in the South East of England. Analysis was guided by coding frameworks developed from the results of the systematic review.

Participants

We recruited 27 participants, including three people with dementia, 12 carers, six service providers and five older people without dementia.

Results

Findings from the focus groups and interviews were consistent with those from the systematic review and suggest that our review findings were applicable to the local setting. We found some evidence that access to information and diagnostic services had improved but, as in the systematic review, post‐diagnosis support was still often experienced as inadequate.

Conclusions

Focus groups and interviews with service users and their representatives can provide useful contextual information. However, such strategies can require considerable investment of the part of the researcher in terms of time and resources, and more work is needed to refine strategies and establish the benefits for patients and the organization of services.     

Patient participation in medication safety during an acute care admission

Background

Patient participation in medication management during hospitalization is thought to reduce medication errors and, following discharge, improve adherence and therapeutic use of medications. There is, however, limited understanding of how patients participate in their medication management while hospitalized.

Objective

To explore patient participation in the context of medication management during a hospital admission for a cardiac surgical intervention of patients with cardiovascular disease.

Design

Single institution, case study design. The unit of analysis was a cardiothoracic ward of a major metropolitan, tertiary referral hospital in Melbourne, Australia. Multiple methods of data collection were used including pre‐admission and pre‐discharge patient interviews (n = 98), naturalistic observations (n = 48) and focus group interviews (n = 2).

Results

All patients had changes made to their pre‐operative cardiovascular medications as a consequence of surgery. More patients were able to list and state the purpose and side‐effects of their cardiovascular medications at pre‐admission than prior to discharge from hospital. There was very little evidence that nurses used opportunities such as medication administration times to engage patients in medication management during hospital admission.

Discussion and Conclusions

Failure to engage patients in medication management and provide opportunities for patients to learn about changes to their medications has implications for the quality and safety of care patients receive in hospital and when managing their medications once discharged. To increase the opportunity for patients to participate in medication management, a fundamental shift in the way nurses currently provide care is required.