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

BACKGROUND: Waiting 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. METHODS: A 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. RESULTS: Participants 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. CONCLUSION: Although 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.

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

BACKGROUND: Community 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. METHODS: The 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. RESULTS: Analysis 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. DISCUSSION: Metaphors 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. CONCLUSIONS: By 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 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.

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

BACKGROUND: Mental 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. METHODS: This 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. RESULTS: Moral 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. CONCLUSIONS: Experiences 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 social determinants of health for people with type 1 diabetes that progress to end-stage renal disease.

OBJECTIVE: 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. METHODS: The findings emerged from a constructivist grounded theory approach through an in-depth examination of life course events that were recounted through qualitative interviews. The rich descriptive detail obtained from this enquiry locates common experiences and the context in which concordance with therapies occurs and health behaviours develop. RESULTS: This qualitative study of young people with type 1 diabetes who have developed end-stage renal disease demonstrates that there are many factors beyond individual control that can contribute to health outcomes. The social determinants of childhood environment, education, socio-economic status, gender and the culture of public health can contribute to disengagement from treatment regimens and the health-care system and to the development of microvascular complications at a comparatively young age. CONCLUSION: These findings challenge the assumptions of health-care practitioners about individual responsibility and highlight the importance of considering how social determinants can shape lives, behaviours and health.

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.

BACKGROUND: This 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. METHODS: A 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. CONCLUSION: These 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.

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. OBJECTIVE AND CONCLUSION: This paper considers patient or person centred care in the light of empowerment as it is understood in the health promotion charters first established in Alma Ata in 1977. We argue that patient or person centred care can be reconfigured within a social justice and rights framework and that doing so supports the creation of conditions for well-being in the broader context, one that impacts strongly on individuals. These arguments have broader implications for the practice of patient centred care as it occurs between patient and health professional and for creating shared responsibility for management of the self. It also has implications for those who manage their health outside of the health sector.

Intergenerational Conflicts, Cultural Restraints and Suicide: Experiences of Young African People in Adelaide, South Australia.

This study aimed to explore determinants of increased suicide deaths among African youth in South Australia. The paper reports on the intersectionality between intergenerational conflicts and fatal suicides in the target population. The study employed a qualitative inquiry approach, studying 31 young people in the African community in Adelaide. Intergenerational conflicts were identified as pervasive, with negative implications for the affected individuals, their families, and the entire African community. These led to turmoil in the community, youth isolation, reduced social interactions, stress and fatal suicides. Intergenerational conflicts and the increased number of suicide deaths were identified as a significant, emerging public health issue within the African community in South Australia. A need to re-orient resources to develop and implement programs to address mental health problems and provide high quality, informed and culturally responsive services that support the community were identified as a priority.

Chronic condition self-management: expectations of responsibility.

OBJECTIVE: While self-management may be beneficial for many patients it assumes and encourages a particular conception of responsibility and self-management that may not fit with all patients' experience of their chronic conditions and their management. It therefore warrants further examination. METHODS: We examine the concept of self-management and responsibility from a range of standpoints, focusing on the Australian context. RESULTS: Attempts to meet people's needs run the risk of imposing specific conceptions of how people should live their lives. While self-management appears to be consistent with placing patients' needs, values and priorities at the heart of healthcare, ill-defined assumptions about responsibility may confound these goals. CONCLUSIONS: Reflection on social determinants of health, the context in which patients seek self-management support from health services, and how their needs and preferences are listened to by health professionals, is critical for the collaborative self-management partnership between them to be effectively realized. PRACTICE IMPLICATIONS: Providing services without reflecting on the meaning of self-management for the person with chronic conditions creates unintended assumptions about responsibility, engagement and care provision which may serve to alienate and further stigmatise some patients. Often, these are the very patients with complex needs who need such service support the most.