Michael Summers

Reducing the psychological distress of family caregivers of home based palliative care patients: longer term effects from a randomised controlled trial

Background: Palliative care incorporates comprehensive support of family caregivers because many of them experience burden and distress. However, evidence‐based support initiatives are few.

Online health information seeking: How people with multiple sclerosis find, assess and integrate treatment information to manage their health

The Internet is increasingly prominent as a source of health information for people with multiple sclerosis (MS). But there has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet. This was the aim of our study.

Comparing Face-to-Face and Online Qualitative Research With People With Multiple Sclerosis:

We compared face-to-face focus groups and an online forum in qualitative research with people with multiple sclerosis (MS) and family members. Although the merits and challenges of online qualitative research have been considered by others, there is limited literature directly comparing these two data collection methods for people with disability or chronic illness. Twenty-seven people participated in one of four focus groups and 33 people took part in an online forum. Demographic and MS-related characteristics were similar between the two groups, with a slight nonsignificant trend toward nonmetropolitan residence in online forum participants. There was a high level of overlap in the themes generated between groups. Participant responses in the online forum were more succinct and on-topic, yet in the focus groups interaction was greater. Online qualitative research methods can facilitate research participation for people with chronic illness or disability, yielding generally comparable information to that gathered via face-to-face methods.

Presenting evidence-based health information for people with multiple sclerosis: the IN-DEEP project protocol

BackgroundIncreasingly, evidence-based health information, in particular evidence from systematic reviews, is being made available to lay audiences, in addition to health professionals. Research efforts have focused on different formats for the lay presentation of health information. However, there is a paucity of data on how patients integrate evidence-based health information with other factors such as their preferences for information and experiences with information-seeking. The aim of this project is to explore how people with multiple sclerosis (MS) integrate health information with their needs, experiences, preferences and values and how these factors can be incorporated into an online resource of evidence-based health information provision for people with MS and their families.MethodsThis project is an Australian-Italian collaboration between researchers, MS societies and people with MS. Using a four-stage mixed methods design, a model will be developed for presenting evidence-based health information on the Internet for people with MS and their families. This evidence-based health information will draw upon systematic reviews of MS interventions from The Cochrane Library. Each stage of the project will build on the last. After conducting focus groups with people with MS and their family members (Stage 1), we will develop a model for summarising and presenting Cochrane MS reviews that is integrated with supporting information to aid understanding and decision making. This will be reviewed and finalised with people with MS, family members, health professionals and MS Society staff (Stage 2), before being uploaded to the Internet and evaluated (Stages 3 and 4).DiscussionThis project aims to produce accessible and meaningful evidence-based health information about MS for use in the varied decision making and management situations people encounter in everyday life. It is expected that the findings will be relevant to broader efforts to provide evidence-based health information for patients and the general public. The international collaboration also permits exploration of cultural differences that could inform international practice.

Programmes to support chronic disease self-management: should we be concerned about the impact on spouses?

Chronic disease self-management support (CDSMS) programmes are widely advocated as an essential element of chronic disease care and have demonstrated increased engagement with self-care activities such as improving diet but may place additional strain on spouses. This study used an embedded mixed methods approach to explore the impact of CDSMS on spouses. Spouses were recruited as part of a larger randomised controlled trial to assess the efficacy of a health professional-led CDSMS programme (the Flinders Program) in older adults with multiple chronic conditions, compared with an attention control group. Spouses were recruited from the general community through General Practitioners located in the southern areas of Adelaide, Australia. Quantitative and qualitative data were collected between September 2009 and March 2011; a total of 25 spouses from each of the CDSMS and control groups provided data. Spousal strain was measured by the Caregiver Risk Screen (CRS). Few spouses had CRS scores indicative of moderate or high strain at baseline or upon completion of the study and CRS scores did not differ by programme allocation. Spouses of participants with poorer self-management (r = 0.34, P = 0.016) and more illness intrusiveness (r = 0.35, P = 0.013) had higher CRS scores at baseline (quantitative) and spousal strain was found to increase as a partners well-being and capacity to self-manage decreased (qualitative). Spouse presence at CDSMS sessions (20%) frequently signalled a reduced level of partner well-being. Overall, our findings suggest that CDSMS programmes in many cases will have little impact (either positive or negative) on spousal strain. A significant increase in spousal strain may occur, however, if there is deterioration in the health status of a CDSMS participant. The impact of decline in participant health status on carer strain needs to be considered in CDSMS programmes.

Informing the Australian government on AT policies: ARATA’s experiences

Abstract This article describes the development and dissemination of an evidence-based Policy Statement and Background Papers by the Australian Rehabilitation and Assistive Technology Association (ARATA). An experienced project team was engaged to conduct literature reviews and member consultations, develop resources and implement a targeted advocacy strategy that included a policy launch and meetings with government officials. The Policy Statement and Background Papers have enabled ARATA to represent the views of Assistive Technology (AT) Practitioners in consultations around the National Disability Insurance Scheme and other AT-related inquiries. In ARATA’s experience, developing a policy statement and disseminating it through a targeted advocacy strategy is an effective way for a not-for-profit professional organisation to influence government policy. Implications for Rehabilitation AT practitioners must consider political factors in working towards effective policies to support their practice. To be effective at a systemic level, AT practitioners must develop political awareness and an understanding of the drivers of policy. This case study provides a blueprint for AT practitioners and organisations in tackling policy change.

Producing an evidence‐based treatment information website in partnership with people affected by multiple sclerosis

In earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy, understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people affected by MS.