Coproduction in practice : participatory action research to develop a model of community aged care

Coproduction has become synonymous with innovative approaches to public service delivery in European Union countries as well as in Australia. Coproduction has the potential to bring together individuals, communities, and organisations in a process to collaboratively develop new models and services which improve public services. Yet, Australian policy makers and practitioners who would like to deploy coproduction within the context of older adult social care can only draw on a handful of papers and reports that could guide implementation. This paper fills this gap by reporting on the implementation of a multi-stakeholder coproduction approach to the development of a consumer directed care model for older people with complex health issues. The paper describes and critically highlights methodological challenges encountered during the 12 month-long participatory action research phase of a larger project involving older people with complex care needs, their carers, and government and non-government stakeholders. The paper outlines key considerations regarding (1) the involvement of older people with complex needs, (2) collaboration with industry partners, (3) engagement of government representatives, and (4) reflects on implementing participatory research projects within a context of outsourcing and interlinked supply chains. While not all challenges encountered could be resolved, the coproduction approach was successful in bringing together a wide range of stakeholders with competing agendas in an iterative process geared to resolve a plethora of concerns raised by older people, carers and services providers. This paper provides an example for others seeking to use coproduction and participatory methods to provide person-centred care services for older people.

Being a parent on dialysis : a literature review

Aim
This literature review explored the extant literature to further our understanding of the experience of being a parent on dialysis.
Methods
Keywords used to search the literature were haemodialysis, hemodialysis, chronic kidney disease, end stage renal disease, parent and experience. Databases searched included CINAHL, Medline, Wiley/Blackwell, EBSCOHost, Web of Science, Pubmed, and ProQuest. Years included were 1999 to 2009. Seventeen primary research articles (sixteen qualitative, one mixed methods) met the search criteria with only one on parents undergoing dialysis.
Findings
The experience of the parent on dialysis has rarely been explored in the literature. Related research has indicated important themes including: restricted lives; relationships; adjustment; consequences and future outlook.
Conclusions
More should be known about challenges that face parents who receive dialysis. This review established an urgent need for further research to determine the experiences and needs of this population to provide empirical, person-centred nursing care.

Conditionally sexual : men and teenage boys with moderate to profound intellectual disability

This article presents qualitative research data about the sexuality of men and teenage boys with moderate to profound intellectual disability. Research findings pointed to a conditional construct of sexuality based within a biopsychosocial framework. The notion Conditionally Sexual represents the perceived limitations, within a rights-based discourse, of these men and teenage boys’ sexuality. The limitations to person-centred service delivery from a policy vacuum in the area of sexuality and intellectual disability represents a major challenge for paid staff. We suggest that a move toward better understanding how to support such a conditional sexual construct will assist the development of a healthy masculine sexuality for men and boys with intellectual disability.

Diabetes and end-of-life care: ethical issues, practices and challenges

Abstract:
Diabetes is the most significant chronic disease and the global prevalence is increasing. Diabetes is associated with debilitating long term complications and other comorbidities that cause high rates of morbidity and mortality. Keeping blood glucose and other metabolic parameters within an acceptable, personalised range is important to comfort and quality of life but can be challenging, especially during end-of-life care. Guidelines can help clinicians make appropriate care decisions; however, there is little research about what constitutes best practice diabetes care at the end-of-life: existing recommendations and guidelines blend the best available evidence with consensus opinion. In addition, there are important ethical and methodological considerations concerning research involving vulnerable people at the end-of-life. Chapter 3 describes the ethical and methodological issues that needed to be considered when developing guidelines for managing diabetes at the end-of-life and the contribution interviews with dying people and their family carers made to developing a guiding philosophy and to person-centred guidelines.

Intimacy at work: Playback theatre and corporate cultural change in Mercedes Benz, Brazil

On the back of a faltering economic year in 2007 and a major merger of motor car and truck dealerships, international motor car giant Mercedes Benz adopted a radical approach to re-aligning the company vision for their Brazilian business. Adopting a people-centred approach to change, they integrated participatory theatre and personal stories into a nationwide cultural development programme producing twelve performances in twelve cities. The central content of the performances came from employees who told personal stories that were then performed onstage. Each event acted as a unique expression of workplace values that would be led by employee attitudes and behaviour. Through the dialogic process, the company established a new code of conduct for customer care for the next phase of company activity. This article critiques various aspects of the programme and considers the value and limitations in the person-centred approach facilitated through theatre.

Ethical challenges associated with providing continence care in residential aged care facilities : findings from a grounded theory study

A person-centred approach to care in residential aged care facilities should uphold residents’ rights to independence, choice, decision-making, participation, and control over their lifestyle. Little is known about how nurses and personal care assistants working in these facilities uphold these ideals when assisting residents maintain continence and manage incontinence. The overall aim of the study was to develop a grounded theory to describe and explain how Australian residents of aged care facilities have their continence care needs determined, delivered and communicated. This paper presents and discusses a subset of the findings about the ethical challenges nurses and personal care assistants encountered whilst providing continence care. Grounded theory methodology was used for in-depth interviews with 18 nurses and personal care assistants who had experience of providing, supervising or assessing continence care in any Australian residential aged care facility, and to analyse 88 hours of field observations in two facilities. Data generation and analysis occurred simultaneously using open coding, theoretical coding, and selective coding, until data were saturated. While addressing the day-to-day needs of residents who needed help to maintain continence and/or manage incontinence, nurses and personal care assistants struggled to enable residents to exercise choice and autonomy. The main factor that contributed to this problem was that the fact that nurses and personal care assistants had to respond to multiple, competing, and conflicting expectations about residents’ care needs. This situation was compounded by workforce constraints, inadequate information about residents’ care needs, and an unpredictable work environment. Providing continence care accentuated the ethical tensions associated with caregiving. Nurses’ and personal care assistants’ responses were mainly characterised by highly protective behaviours towards residents. Underlying structural factors that hinder high quality continence care to residents of aged care facilities should be urgently addressed.

Families' experiences of their interactions with staff in an Australian intensive care unit (ICU): a qualitative study

Nursing is characterised as a profession that provides holistic, person-centred care. Due to the condition of the critically ill, a family-centred care model is more applicable in this context. Furthermore, families are at risk of emotional and psychological distress, as a result of the admission of their relative to intensive care. The families' experiences of their interactions in intensive care have the potential to enhance or minimise this risk. This paper presents a subset of findings from a broader study exploring families of critically ill patients' experiences of their interactions with staff, their environment, the patient and other families, when their relative is admitted to an Australian intensive care unit. By developing an understanding of their experience, nurses are able to implement interventions to minimise the families' distress, while providing more holistic, person- and family-centred care.

Health cosmopolitanism: melding universality and difference – the case of childbirth in post-conflict Timor Leste

ABSTRACTThis study will consider the case of TBAs (traditional birth attendants) under the health cosmopolitan banner. Fifteen interviews with health administrators, obstetricians, midwives, traditional birth attendants and women in Timor Leste, provide evidence : (1) that the WHO (1992) directive to dismiss the inclusion of TBAs within the formal maternity care system has been precipitous (2) that TBAs could, with adequate training in emergency obstetric techniques and hygienic practices, assist in meeting MDG No 5, and (3) that TBAs may assist in sustaining hybrid cosmologies and serving other cultural aims. Although Millennium Development Goals embrace the idea of the universal right to health, a human rights framework remains abstract and legalistic. I argue that health cosmopolitanism offers a more inclusive lens. Applied to maternity care it shifts childbirth to a central focus of government policy, obliges all nations to contribute international aid yet recognises the interpretation of complex needs at the local level. It defines a philosophy of care that is person-centred (not professional or institution-centred), ensures equal access to quality care (based not on ability to pay or other obstacles such as geographical distance) and choice of carer and modality (Western, traditional or hybrid). It underlines the argument here that TBAs trained in emergency obstetric care and hygiene and funded by international agencies would ensure every woman has a known carer, plus choice of location, modality and provider. Health cosmopolitanism thus embraces universality, individual autonomy, reciprocal respect and global responsibility.

Nephrologists' management of patient medications in kidney transplantation: results of an online survey

Rationale, aims and objectives: Medication adherence is essential in kidney transplant recipients to reduce the risk of rejection and subsequent allograft loss. The aim of this study was to delineate what 'usual care' entails, in relation to medication management, for adult kidney transplant recipients. Methods: An online survey was developed to explore how nephrologists promote and assess medication adherence, the management of prescriptions, the frequency of clinic appointments and the frequency of clinical screening tests. Nephrologists from all acute kidney transplant units in Victoria, Australia, were invited to participate. Data were collected between May and June 2014. Results: Of 60 nephrologists invited to participate, 22 completed the survey (response rate of 36.6%). Respondents had a mean age of 49.1±10.1 years, with a mean of 20.1±9.9 years working in nephrology and 14 were men. Descriptive analysis of responses showed that nephrologists performed frequent screening for kidney graft dysfunction that may indicate medication non-adherence, maintained regular transplant clinic visits with patients and emphasized the importance of medication education. However, time constraints during consultations impacted on extensive patient education and the long-term medication follow-up support was often delivered by the renal transplant nurse coordinator or pharmacist. Conclusions: This study highlighted that nephrologists took an active approach in the medication management of kidney transplant recipients, which may assist with facilitating long-term graft survival. Ultimately, promoting medication adherence needs to be patient centred, involving an interdisciplinary team of nephrologists, pharmacists and renal transplant nurse coordinators, working together with the patient to establish optimal adherence.

Patients' perceptions of participation in nursing care on medical wards

BACKGROUND: Patient participation benefits the patient and is a core concept of patient-centred care. Patients believe in their ability to prevent errors; thus, they may play a vital role in combating adverse event rates in hospitals. AIMS AND OBJECTIVES: To explore hospitalised medical patients' perceptions of participating in nursing care, including the barriers and facilitators for this activity. RESEARCH METHODS: This interpretive study was conducted on four medical wards, in two hospitals. Purposeful maximum variation sampling was operationalised to recruit patients that differed in areas such as age, gender and mobility status. In-depth semi-structured audiotaped interviews were undertaken and analysed using inductive content analysis. RESULTS: Twenty patients participated in the study. Four categories were uncovered in the data. First, valuing participation showed patients' willingness to participate, viewing it as a worthwhile task. Second, exchanging intelligence was a way of participating where patients' knowledge was built and shared with health professionals. Third, on the lookout was a type of participation where patients monitored their care, showing an attentive approach towards their own safety. Fourth, power imbalance was characterised by patients feeling their opportunities for participation were restricted. CONCLUSIONS: Patients were motivated to participate and valued participation. Cultivating this motivation may be crucial to patient empowerment and practices of safety monitoring, a fundamental strategy to addressing patient safety issues in hospitals. Engaging nurse-patient relationships, inclusive of knowledge sharing, is required in practice to empower patients to participate. Educating patients on the consequences of non-participation may motivate them, while nurses may benefit from training on patient-centred approaches. Future research should address ways to increase patient motivation and opportunities to participate.

Patient engagement in clinical communication: an exploratory study

AIM: Existing practice strategies for actively involving patients in care during hospitalisation are poorly understood. The aim of this study was to explore how healthcare professionals engaged patients in communication associated with care transitions.

METHOD: An instrumental, collective case study approach was used to generate empirical data about patient transitions in care. A purposive sample of key stakeholders representing (i) patients and their families; (ii) hospital discharge planning team members; and (iii) healthcare professionals was recruited in five Australian health services. Individual and group semi-structured interviews were conducted to elicit detailed explanations of patient engagement in transition planning. Interviews lasted between 30 and 60 minutes and were digitally recorded and transcribed verbatim. Data collection and analysis were conducted simultaneously and continued until saturation was achieved. Thematic analysis was undertaken.

RESULTS: Five themes emerged as follows: (i) organisational commitment to patient engagement; (ii) the influence of hierarchical culture and professional norms on patient engagement; (iii) condoning individual healthcare professionals' orientations and actions; (iv) understanding and negotiating patient preferences; and (v) enacting information sharing and communication strategies. Most themes illustrated how patient engagement was enabled; however, barriers also existed.

CONCLUSION: Our findings show that strong organisational and professional commitment to patient-centred care throughout the organisation was a consistent feature of health services that actively engaged patients in clinical communication. Understanding patients' needs and preferences and having both formal and informal strategies to engage patients in clinical communication were important in how this involvement occurred.

Perceptions of crisis care in populations who self-referred to a telephone-based mental health triage service

Although psychiatric crises are very common in people with mental illness, little is known about consumer perceptions of mental health crisis care. Given the current emphasis on recovery-oriented approaches, shared decision-making, and partnering with consumers in planning and delivering care, this knowledge gap is significant. Since the late 1990s, access to Australian mental health services has been facilitated by 24/7 telephone-based mental health triage systems, which provide initial psychiatric assessment, referral, support, and advice. A significant proportion of consumers access telephone-based mental health triage services in a state of crisis, but to date, there has been no published studies that specifically report on consumer perceptions on the quality and effectiveness of the care provided by these services. This article reports on a study that investigated consumer perceptions of accessing telephone-based mental health triage services. Seventy-five mental health consumers participated in a telephone interview about their triage service use experience. An eight-item survey designed to measure the responsiveness of mental health services was used for data collection. The findings reported here focus on the qualitative data produced in the study. Consumer participants shared a range of perspectives on telephone-based mental health triage that provide invaluable insights into the needs, expectations, and service use experiences of consumers seeking assistance with a mental health problem. Consumer perceptions of crisis care have important implications for practice. Approaches and interventions identified as important to quality care can be used to inform educational and practice initiatives that promote person-centred, collaborative crisis care.