‘Walking the tightrope’: The role of peer support workers in facilitating consumers’ participation in decision‐making

In adult mental health services, the participation of consumers is essential. The aim of this study was to explore the challenges faced by peer support workers when involving mental health consumers in decision‐making about their care and the strategies they employed to overcome these challenges so as to improve mental health consumers’ participation in decision‐making and recovery. Semi‐structured individual interviews were conducted with six peer support workers currently employed in psychiatric hospitals and/or community mental health systems. Thematic analysis identified challenges related to role definition, power imbalance, doctor‐centric medical approaches to care, and lack of resources. Strategies to overcome these challenges that were reported, included the following: facilitating meaningful involvement for service users, appropriate use of the lived experience, building relationships and communication, promoting rights and advocacy, and promoting professionalism of peer support workers (PSWs). Nursing staff need ongoing support and education to understand and value the varied roles of PSWs and thereby empower PSWs to engage in enhancing consumer decision‐making. The roles of the PSWs should be viewed as complementary, and greater appreciation and understanding of roles would better support recovery‐oriented care.     

Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND): decision‐making about ‘ongoing change and adaptation’

Aims and objectives. To present a model that explicates the dimensions of change and adaptation as revealed by people who are diagnosed and live with amyotrophic lateral sclerosis/motor neurone disease. Background. Most research about amyotrophic lateral sclerosis/motor neurone disease is medically focused on cause and cure for the illness. Although psychological studies have sought to understand the illness experience through questionnaires, little is known about the experience of living with amyotrophic lateral sclerosis/motor neurone disease as described by people with the disease. Design. A grounded theory method of simultaneous data collection and constant comparative analysis was chosen for the conduct of this study. Methods. Data collection involved in‐depth interviews, electronic correspondence, field notes, as well as stories, prose, songs and photographs important to participants. QSR NVivo 2^® software was used to manage the data and modelling used to illustrate concepts. Findings. Participants used a cyclic, decision‐making pattern about ‘ongoing change and adaptation’ as they lived with the disease. This pattern formed the basis of the model that is presented in this paper. Conclusion. The lives of people living with amyotrophic lateral sclerosis/motor neurone disease revolve around the need to make decisions about how to live with the disease progression and their deteriorating abilities. Life decisions were negotiated by participants to maintain a sense of self and well‐being in the face of change. Relevance to clinical practice. The ‘ongoing change and adaptation’ model is a framework that can guide practitioners to understand the decision‐making processes of people living with amyotrophic lateral sclerosis/motor neurone disease. Such understanding will enhance caring and promote models of care that are person‐centred. The model may also have relevance for people with other life limiting diseases and their care.     

Protocol‐based care: the standardisation of decision‐making?

Aim. To explore how protocol‐based care affects clinical decision‐making. Background. In the context of evidence‐based practice, protocol‐based care is a mechanism for facilitating the standardisation of care and streamlining decision‐making through rationalising the information with which to make judgements and ultimately decisions. However, whether protocol‐based care does, in the reality of practice, standardise decision‐making is unknown. This paper reports on a study that explored the impact of protocol‐based care on nurses’ decision‐making. Design. Theoretically informed by realistic evaluation and the promoting action on research implementation in health services framework, a case study design using ethnographic methods was used. Two sites were purposively sampled; a diabetic and endocrine unit and a cardiac medical unit. Methods. Within each site, data collection included observation, postobservation semi‐structured interviews with staff and patients, field notes, feedback sessions and document review. Data were inductively and thematically analysed. Results. Decisions made by nurses in both sites were varied according to many different and interacting factors. While several standardised care approaches were available for use, in reality, a variety of information sources informed decision‐making. The primary approach to knowledge exchange and acquisition was person‐to‐person; decision‐making was a social activity. Rarely were standardised care approaches obviously referred to; nurses described following a mental flowchart, not necessarily linked to a particular guideline or protocol. When standardised care approaches were used, it was reported that they were used flexibly and particularised. Conclusions. While the logic of protocol‐based care is algorithmic, in the reality of clinical practice, other sources of information supported nurses’ decision‐making process. This has significant implications for the political goal of standardisation. Relevance to clinical practice. The successful implementation and judicious use of tools such as protocols and guidelines will likely be dependant on approaches that facilitate the development of nurses’ decision‐making processes in parallel to paying attention to the influence of context.     

Women's help‐seeking behaviour during a first acute myocardial infarction

Studies indicate that the time from onset of symptoms to medical treatment has decreased in acute myocardial infarction (AMI). However, there are still variations indicating that women wait longer than men before making the decision to seek medical care. Multidimensional factors hindering and facilitating the decision have been identified in previous studies, though few have fully explored how social context affects women's expectations, interpretations and actions and so influences the decision‐making process. The aim of this study was therefore to identify how women's experiences interacted and influenced the decision to seek medical care at their first AMI. Seventeen women, aged 38–75 years, were interviewed, at home or in the hospital, between June 2011 and May 2012. Grounded theory was used as a method, and data collection and analysis were carried out simultaneously. The results showed that before deciding to seek medical care, these women went through three defined but interrelated processes that together hindered their normal activities and made them act according to existential needs. The women's experiences of the progression of the disease, in terms of both symptoms and time, were very different, so they sought medical care at different times, sometimes life‐threateningly late and sometimes before developing an AMI. Three mechanisms had to coincide if the women were to receive medical care. First, the women had to acknowledge their symptoms as something more than common bodily changes. Second, the healthcare system had to be accessible when the women made their decision to seek care. Third, the women must have come into contact with healthcare providers when the heart muscle had taken enough damage to measure.     

Metasynthesis: withdrawing life‐sustaining treatments: the experience of family decision‐makers

Aim. The present study was undertaken to synthesise findings from qualitative investigations of family participation in decisions to withdraw and/or withhold life‐sustaining treatment from a seriously ill family member. Background. As a consequence of increasing effectiveness and sophistication of available medical interventions, death is commonly preceded by a decision to withdraw or withhold potentially life‐sustaining treatments. These decisions take place in a bioethical context characterised by the preeminence of self‐determination, but patients are typically too ill to make their own decisions. Thus, family members are called upon to participate in these morally consequential decisions on the patient’s behalf. Design. Metasynthesis Method. Metasynthesis is a form of inquiry that provides for integration of qualitative studies’ findings to strengthen knowledge for practice and advance theoretical development. This metasynthesis was conducted using the constant comparative methods of grounded theory. Results. Family members engage in a process of participation in decision‐making that is comprised of three major categories: reframing reality, relating and integrating. Surrogates used both cues and information as they reframed their understanding of the patient’s status. Relationships with providers and with other family members powerfully influenced the decision‐making process. Integrating was characterised by reconciling and going forward. This part of the process has both intrapersonal and interpersonal aspects and describes how family decision‐makers find meaning in their experience and move forward in their lives. Conclusions. This synthesis provides a more comprehensive and empirically supported understanding of family members’ experiences as they participate in treatment decisions for dying family members. Relevance to clinical practice. This metasynthesis provides evidence to improve family care during treatment withdrawal/withholding decision‐making and a theoretical model that can be used to guide creation of clinical practice guidelines. Through increased understanding of family members’ experiences, clinicians can more effectively support family decision‐making processes.