Elizabeth Kendall

Indigenous ways of knowing: implications for participatory research and community.

Researchers have a responsibility to cause no harm, but research has been a source of distress for indigenous people because of inappropriate methods and practices. The way researchers acquire knowledge in indigenous communities may be as critical for eliminating health disparities as the actual knowledge that is gained about a particular health problem. Researchers working with indigenous communities must continue to resolve conflict between the values of the academic setting and those of the community. It is important to consider the ways of knowing that exist in indigenous communities when developing research methods. Challenges to research partnerships include how to distribute the benefits of the research findings when academic or external needs contrast with the need to protect indigenous knowledge.

Patient-centered approaches to health care: A systematic review of randomized controlled trials

There is growing interest in patient-centered care, but there is little guidance about the interventions required for its delivery and whether it leads to better health outcomes. This systematic review evaluates the efficacy of patient-centered care interventions for people with chronic conditions. Thirty randomized controlled trials were identified from health-related databases. The findings indicated that most interventions were based on the notion of empowering care and included attempts to educate consumers or prompt them about how to manage a health consultation. Other common interventions focused on training providers in delivering empowering care. Although it was difficult to draw firm conclusions because of the moderate to high risk of bias of the research designs, this review has shown some promising findings from implementing a patient-centered care approach. There appeared to be benefits associated with this model of care in terms of patient satisfaction and perceived quality of care.

Community-based Service Delivery in Rehabilitation: The Promise and the Paradox

Purpose : According to many researchers, rehabilitation is being prevented from developing as a distinct profession due to two major problems. First, it has been claimed that rehabilitation is in need of a professional identity and a sense of cohesion if it is to emerge as a discipline. Second, it has been recognized that there is a need for a rehabilitation framework to challenge the restorative approach that continues to dominate rehabilitation, linking it back to the medical model from which it has attempted to escape. The model of community-based rehabilitation (CBR) is offered as a model that can provide the impetus for an attitudinal shift from the restorative tradition and unite rehabilitation workers through a cohesive framework. Method : Unfortunately, the implementation of community-based rehabilitation in urban societies has been disappointing. The current paper is a conceptual discussion of communitybased rehabilitation that explores some potential causes of this poor implementation. Results : To some extent, the implementation failure of community-based rehabilitation can be attributed to the paradoxes that are inherent in its fundamental construct sempowerment and community inclusion. These paradoxes occur at a conceptual level, a practical level and a contextual level. Conclusions : Some solutions are offered to enable the paradigm to be implemented more fully. In particular, it is suggested that there is a need to develop useful working definitions of these constructs, favourable attitudes among rehabilitation workers and a focus on community development.

Extinguishing the social?: state sponsored self‐care policy and the Chronic Disease Self‐management Programme

The Chronic Disease Self‐management Programme (CDSMP) is a psycho‐educational programme designed to increase the capacity of people with chronic conditions to self‐manage. This initiative forms an integral part of the ‘Expert Patient Programme’ in the UK and the ‘Sharing Health Care’ programme in Australia. The aim of this paper is to critically appraise the principles of the CDSMP as a national self‐care policy initiative in the context of existing formations and ideological approaches to self‐care. Although the CDSMP appears to promote a ‘social model’ of disability, particularly in its generic manifestation, the use of the notion of self‐efficacy as a primary marker of change means that it ultimately falls back onto an individualistic approach. The latter ignores pre‐existing traditions of self‐help embedded within advanced welfare societies.. We argue that state sponsored polices about self‐management would benefit from greater recognition of existing social knowledge and theories about how people respond to being diagnosed with a long‐term condition.

Critically appraising qualitative research: A guide for clinicians more familiar with quantitative techniques

Objectives: Papers using qualitative methods are increasingly common in psychiatric journals. This overview is an introduction to critically appraising a qualitative paper for clinicians who are more familiar with quantitative methods. Conclusions: Qualitative research uses data from interviews (semi-structured or unstructured), focus groups, observations or written materials. Data analysis is inductive, allowing meaning to emerge from the data, rather than the more deductive, hypothesis centred approach of quantitative research. This overview compares and contrasts quantitative and qualitative research methods. Quantitative concepts such as reliability, validity, statistical power, bias and generalisability have qualitative equivalents. These include triangulation, trustworthiness, saturation, reflexivity and applicability. Reflexivity also shares features of transference. Qualitative approaches include: ethnography, action-assessment, grounded theory, case studies and mixed methods. Qualitative research can complement quantitative approaches. An understanding of both is useful in critically appraising the psychiatric literature.

Missing discourses: concepts of joy and happiness in disability

This paper analyses a series of representations of disability and rehabilitation taken from research and policy settings in Australia. The purpose of the analysis is to (a) identify the presence or absence of discourses of happiness and joy in the contexts analysed and (b) to analyse the various treatments and interpretations of happiness and joy that are present. Through this analysis we show that while official professional and public discourses on disability and rehabilitation exhibit predominantly negative discursive patterns and features (i.e. aspirations to achieve ‘normality’ and a negative lexicon, such as disability, coping, rehabilitation, burden, abnormality, etc.) there are many other potentially positive and empowering discursive and narrative patterns and features that remain hidden beneath negatively oriented ways of seeing, being, acting and describing in academic, policy and practice settings. We argue that policy‐makers and academics alike need to be sensitive to the dynamics of discourse when constructing research and developing policy.

Identity transition following traumatic brain injury: A dynamic process of contraction, expansion and tentative balance

Primary objective: The study aimed to understand turning points and processes that define the experience of identity change for individuals with brain injury. Research design: The current study applied an interpretive qualitative research design using a phenomenological approach. Qualitative ‘life-story’ interviewing was undertaken to explore the natural course of identity following TBI and a critical incident technique was applied to systematically examine key milestones. Methods and procedures: A purposive sample of six individuals with brain injury who represented a successive range of post-injury time frames (1–2 years, 2–5 years, 5–10 years, 10–15 years, 15–20 years and 25+ years) participated in the interviews. Main outcomes and results: Qualitative analysis indicated that identity transition was characterized by a dynamic and convoluted process of contraction, expansion and tentative balance. Conclusions: The influence of subjective processes on the development of identity highlights the inadequacy of fragmented approaches when exploring the individual experience. Findings from this study have important implications for the delivery of person-focused rehabilitation and remind one to consider with caution the usual indicators of adjustment that are often applied to brain injury rehabilitation.

Burden of treatment for chronic illness: a concept analysis and review of the literature

Treatment burden, the burden associated with the treatment and management of chronic illness, has not yet been well articulated.

Self-managing versus self-management: reinvigorating the socio-political dimensions of self-management

In Australia, self-management predominantly refers to education programmes that, theoretically, equip people with chronic disease with the necessary information and skills to manage their own healthcare, maintain optimal health, and minimize the consequences of their condition. These programmes are designed, and often delivered, by practitioners. Our research has demonstrated that for consumers, self-management involves navigating and responding to a myriad of information sources and experiences, many of which originate in their own lived bodily experiences and personal knowledge. In contrast to this organic and dynamic version of self-managing that is naturally practised by consumers, common practitioner and policy representations of self-management tend to discount consumer agency and overlook the daily ways in which people manage their own body, experiences and health choices. We argue that if the self-management movement is to tackle health inequalities (rather than creating new ones), health professionals and policy-makers must examine the potentially damaging assumptions that are inherent in contemporary self-management discourse.

The effectiveness of culturally appropriate interventions to manage or prevent chronic disease in culturally and linguistically diverse communities: a systematic literature review.

Culturally and linguistically diverse (CALD) communities in Australia experience both significant health disparities and a lack of access to services. Consequently, there have been calls for culturally appropriate services for people with chronic disease in CALD populations. This paper presents a systematic review of the literature on the effectiveness of culturally appropriate interventions to manage or prevent chronic disease in CALD communities. Evidence was sought from randomized controlled trials and controlled studies that examined strategies for promoting cultural competence in health service delivery to CALD communities. The outcomes examined included changes in consumer health behaviours, utilisation/satisfaction with the service, and the cultural competence of health-care providers. Of the 202 studies that were identified only 24 met the inclusion criteria. The five categories of intervention that were identified included: (1) the use of community-based bi-lingual health workers; (2) providing cultural competency training for health workers; (3) using interpreter service for CALD people; (4) using multimedia and culturally sensitive videos to promote health for CALD people and (5) establishing community point-of-care services for CALD people with chronic disease. The review supported the use of trained bi-lingual health workers, who are culturally competent, as a major consideration in the development of an appropriate health service model for CALD communities.