Mariastella Pulvirenti

Empowerment, patient centred care and self‐management

Background  Patient or person centred care is widely accepted as the philosophy and practice that underpins quality care. An examination of the Australian National Chronic Disease Strategy and literature in the field highlights assumptions about the self‐manager as patient and a focus on clinical settings.

A Focus Group Study of Predictors of Relapse in Electronic Gaming Machine Problem Gambling, Part 1: Factors that ‘Push’ Towards Relapse

This study aimed to develop an empirically based description of relapse in Electronic Gaming Machine problem gambling. In this paper the authors describe part one of a two part, linked relapse process: the ‘push’ towards relapse. In this two-part process, factors interact sequentially and simultaneously within the problem gambler to produce a series of mental and behavioural events that ends with relapse when the ‘push’ overcomes ‘pull’ (part one); or as described in part two, continued abstinence when ‘pull’ overcomes ‘push’. In the second paper, the authors describe how interacting factors ‘pull’ the problem gambler away from relapse. This study used four focus groups comprising thirty participants who were gamblers, gamblers’ significant others, therapists and counsellors. The groups were recorded, recordings were then transcribed and analysed using thematic, textual analysis. With the large number of variables considered to be related to relapse in problem gamblers, five key factors emerged that ‘push’ the gambler towards relapse. These were urge, erroneous cognitions about the outcomes of gambling, negative affect, dysfunctional relationships and environmental gambling triggers. Two theories emerged: (1) each relapse episode comprised a sequence of mental and behavioural events, which evolves over time and was modified by factors that ‘push’ this sequence towards relapse and (2) a number of gamblers develop an altered state of consciousness during relapse described as the ‘zone’ which prolongs the relapse.

A qualitative study of patient (dis)trust in public and private hospitals: the importance of choice and pragmatic acceptance for trust considerations in South Australia

BackgroundThis paper explores the nature and reasoning for (dis)trust in Australian public and private hospitals. Patient trust increases uptake of, engagement with and optimal outcomes from healthcare services and is therefore central to health practice, policy and planning.MethodsA qualitative study in South Australia, including 36 in-depth interviews (18 from public and 18 from private hospitals).Results‘Private patients’ made active choices about both their hospital and doctor, playing the role of the ‘consumer’, where trust and choice went hand in hand. The reputation of the doctor and hospital were key drivers of trust, under the assumption that a better reputation equates with higher quality care. However, making a choice to trust a doctor led to personal responsibility and the additional requirement for self-trust. ‘Public patients’ described having no choice in their hospital or doctor. They recognised ‘problems’ in the public healthcare system but accepted and even excused these as ‘part of the system’. In order to justify their trust, they argued that doctors in public hospitals tried to do their best in difficult circumstances, thereby deserving of trust. This ‘resigned trust’ may stem from a lack of alternatives for free health care and thus a dependence on the system.ConclusionThese two contrasting models of trust within the same locality point to the way different configurations of healthcare systems, hospital experiences, insurance coverage and related forms of ‘choice’ combine to shape different formats of trust, as patients act to manage their vulnerability within these contexts.

A Focus Group Study of Predictors of Relapse in Electronic Gaming Machine Problem Gambling, Part 2: Factors that ‘Pull’ the Gambler Away from Relapse

This study aimed to develop an empirically based description of relapse in Electronic Gaming Machine (EGM) problem gambling (PG) by describing the processes and factors that ‘pull’ the problem gambler away from relapse contrasted with the ‘push’ towards relapse. These conceptualisations describe two opposing, interacting emotional processes occurring within the problem gambler during any relapse episode. Each relapse episode comprises a complex set of psychological and social behaviours where many factors interact sequentially and simultaneously within the problem gambler to produce a series of mental and behaviour events that end (1) with relapse where ‘push’ overcomes ‘pull’ or (2) continued abstinence where ‘pull’ overcomes ‘push’. Four focus groups comprising thirty participants who were EGM problem gamblers, gamblers’ significant others, therapists and counsellors described their experiences and understanding of relapse. The groups were recorded, recordings were then transcribed and analysed using thematic textual analysis. It was established that vigilance, motivation to commit to change, positive social support, cognitive strategies such as remembering past gambling harms or distraction techniques to avoid thinking about gambling to enable gamblers to manage the urge to gamble and urge extinction were key factors that protected against relapse. Three complementary theories emerged from the analysis. Firstly, a process of reappraisal of personal gambling behaviour pulls the gambler away from relapse. This results in a commitment to change that develops over time and affects but is independent of each episode of relapse. Secondly, relapse may be halted by interacting factors that ‘pull’ the problem gambler away from the sequence of mental and behavioural events, which follow the triggering of the urge and cognitions to gamble. Thirdly, urge extinction and apparent ‘cure’ is possible for EGM gambling. This study provides a qualitative, empirical model for understanding protective factors against gambling relapse.

Examining the use of metaphors to understand the experience of community treatment orders for patients and mental health workers

BackgroundCommunity Treatment Orders (CTOs) are often complex because of the ethical tensions created by an intervention that aims at promoting the patient’s good through an inherently coercive process. There is limited research that examines the complexity of CTOs and how patients on CTOs and workers administering CTOs make sense of their experiences.MethodsThe study involved in-depth interviews with 8 patients on CTOs and 10 community mental health workers in South Australia, to explore how they constructed their experiences of CTOs. Critical discourse analysis (CDA) was used to analyse the data, supported by NVIVO software.ResultsAnalysis of the interviews revealed that patients and workers experienced the CTO process as multi-dimensional, including some positive as well as more negative constructions. The positive metaphor of CTOs as a safety net is described, followed by a more detailed description of the metaphors of power and control as the dominant themes, with five sub-themes of the CTO as control, wake-up, punishment, surveillance, and tranquiliser.DiscussionMetaphors are a way that mental health patients and mental health workers articulate the nature of CTOs. The language used to construct these metaphors was quite different, with patients overwhelmingly experiencing and perceiving CTOs as coercive (that is, punishing, controlling and scrutinizing), whereas workers tended to perceive them as necessary, beneficial and supportive, despite their coerciveness.ConclusionsBy acknowledging the role of metaphors in these patients’ lives, workers could enhance opportunities to engage these patients in more meaningful dialogue about their personal experiences as an alternative to practice predominantly focused on risk. Such a dialogue could enhance workers’ reflection on their work and promote recovery-based practice. More understanding of how to promote autonomy, capacity and supported decision-making, and how to address the impacts of coercion within care, is needed.

The social determinants of health for people with type 1 diabetes that progress to end-stage renal disease.

Self‐management of type 1 diabetes over a lifetime is complex and challenging even in the best of circumstances, and the social environment can be a powerful determinant of health behaviours and outcomes. The aim of this study was to identify how social determinants of health can impact on the capacity of young people to manage their glycaemic control.

‘Waiting for’ and ‘waiting in’ public and private hospitals: a qualitative study of patient trust in South Australia

BackgroundWaiting times for hospital appointments, treatment and/or surgery have become a major political and health service problem, leading to national maximum waiting times and policies to reduce waiting times. Quantitative studies have documented waiting times for various types of surgery and longer waiting times in public vs private hospitals. However, very little qualitative research has explored patient experiences of waiting, how this compares between public and private hospitals, and the implications for trust in hospitals and healthcare professionals. The aim of this paper is to provide a deep understanding of the impact of waiting times on patient trust in public and private hospitals.MethodsA qualitative study in South Australia, including 36 in-depth interviews (18 from public and 18 from private hospitals). Data collection occurred in 2012–13, and data were analysed using pre-coding, followed by conceptual and theoretical categorisation.ResultsParticipants differentiated between experiences of ‘waiting for’ (e.g. for specialist appointments and surgery) and ‘waiting in’ (e.g. in emergency departments and outpatient clinics) public and private hospitals. Whilst ‘waiting for’ public hospitals was longer than private hospitals, this was often justified and accepted by public patients (e.g. due to reduced government funding), therefore it did not lead to distrust of public hospitals. Private patients had shorter ‘waiting for’ hospital services, increasing their trust in private hospitals and distrust of public hospitals. Public patients also recounted many experiences of longer ‘waiting in’ public hospitals, leading to frustration and anxiety, although they rarely blamed or distrusted the doctors or nurses, instead blaming an underfunded system and over-worked staff. Doctors and nurses were seen to be doing their best, and therefore trustworthy.ConclusionAlthough public patients experienced longer ‘waiting for’ and ‘waiting in’ public hospitals, it did not lead to widespread distrust in public hospitals or healthcare professionals. Private patients recounted largely positive stories of reduced ‘waiting for’ and ‘waiting in’ private hospitals, and generally distrusted public hospitals. The continuing trust by public patients in the face of negative experiences may be understood as a form of exchange trust norm, in which institutional trust is based on base-level expectations of consistency and minimum standards of care and safety. The institutional trust by private patients may be understood as a form of communal trust norm, whereby trust is based on the additional and higher-level expectations of flexibility, reduced waiting and more time with healthcare professionals.

A qualitative study examining the presence and consequences of moral framings in patients' and mental health workers' experiences of community treatment orders.

BackgroundMental health recovery involves acknowledging the importance of building the person’s capacity for agency. This might be particularly important for patients on community treatment orders (CTOs - which involve enforced treatment for their mental illness), given limited international evidence for their effectiveness and underlying concerns about the use of coercion by workers and systems of care towards this population of people with mental illness.MethodsThis study sought to understand how the meaning of CTOs is constructed and experienced, from the perspective of patients on CTOs and workers directly administering CTOs. Qualitative interviews were conducted with South Australian community mental health patients (n = 8) and mental health workers (n = 10) in 2013–14. During thematic analysis of data, assisted by NVIVO software, the researchers were struck by the language used by both groups of participants and so undertook an examination of the moral framings apparent within the data.ResultsMoral framing was apparent in participants’ constructions and evaluations of the CTO experience as positive, negative or justifiable. Most patient participants appeared to use moral framing to: try to understand why they were placed on a CTO; make sense of the experience of being on a CTO; and convey the lessons they have learnt. Worker participants appeared to use moral framing to justify the imposition of care. Empathy was part of this, as was patients’ positive right to services and treatment, which they believed would only occur for these patients via a CTO. Workers positioned themselves as trying to put themselves in the patients’ shoes as a way of acting virtuously towards them, softening the coercive stick approach. Four themes were identified: explicit moral framing; best interests of the patient; lessons learned by the patient; and, empathy.ConclusionsExperiences of CTOs are multi-layered, and depend critically upon empathy and reflection on the relationship between what is done and how it is done. This includes explicit examination of the moral framing present in everyday interactions between mental health workers and their patients in order to overcome the paradox of the moral grey zone between caring and controlling. It suggests a need for workers to receive ongoing empathy training.

The Lived Experience of Caring for an Australian Military Veteran With Posttraumatic Stress Disorder

There is limited literature on the experience of caring for an intimate partner with a mental health condition. Posttraumatic stress disorder (PTSD) is a common mental health condition for military veterans; yet, little is known about how partners experience and cope with these caring relationships. Using an interpretive phenomenological approach, we collected data through individual interviews with 20 female partners of male veterans diagnosed with PTSD living in South Australia. We found the emotional features of caring to be directly derived from the strength of commitment these carers had to their relationships. We show that lack of understanding of carers’ lives, particularly by health providers and government, has resulted in a sense of social disconnect and invisibility that has contributed to stress and is a barrier to coping. Of vital importance to these carers was that partners of younger veterans should not have to suffer the same experiences.

Politics of Evidence: The Communication of Evidence by ‘Stakeholders’ when Advocating for Tobacco Point-of-sale Display Bans in Australia

There is a tension in the policy field about the way that the policy process should occur and the manner in which evidence should inform policy decisions. This article presents findings from a qualitative study on the introduction of point-of-sale tobacco display bans in Australia to provide an insight into the way this public policy was introduced and the way that evidence was used and communicated to influence the policy outcome. This study highlights that tobacco control policy does not merely consist of a series of segmented and unconnected decisions. It is an ongoing process, whereby the acceptability of forms of knowledge has shifted over time. This has enabled the introduction of tobacco control initiatives on the basis of good judgement when there is a paucity of specific evaluation information to support a policys introduction.