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.

“I want to see the Queen” : experiences of service use by ageing people with an intellectual disability

People with intellectual disability are a relatively new but growing minority group within Australia's ageing population. Disability policies point to the equal right of people with disabilities to a quality of life similar to that of other citizens. Disability services are increasingly required to provide individualised and responsive services, irrespective of age, for people with lifelong disabilities. The present study explored the everyday lives of older people with intellectual disability in Victoria and Queensland, examining their experiences of using disability services and the ways in which services responded to their ageing. The aim of the study was to inform practice and service development for older people with intellectual disability. The findings suggest that services facilitate important social relationships with other service users and staff. Most older people had a sense of belonging and led busy but directionless lives in two disconnected worlds. Their lives were subject to significant external present-focused control. Yet, despite this, neither services nor family members took responsibility for ensuring their sense of continuity or supporting the development of plans about their future. The experiences described suggest an urgent need for, but significant challenges in the implementation of, holistic indivdualised planning similar to the UK concept of person-centred planning.

Evaluation of an Older Persons’ Assessment Educational Workbook with second year nursing students in the UK.

Background: As a first step to successfully meet the complex health and social needs of older people, patient assessment has become a central feature of government policy and practice in order to ensure that care planning is person-centred. A core component of nurse education is clinical practice in order to support the development of clinical skills and competence; therefore it is important to help students and their practice-based mentors to develop and apply older person assessment skills. Therefore, an educational workbook was developed to help 2nd year nursing students to learn a structured, systematic and individualised older person assessment process with the support of their mentor.

Aim: A pilot study to evaluate the impact of an Older Persons’ Assessment Educational Workbook and explore second year nursing students’ competence and their opinions and use of an older person’s assessment skills workbook.

Research Methodology: A pre-experimental design (pre and post-test with no comparison group) was undertaken with n=6 2nd year students in 2014. The outcome measure was the Nursing Competence Questionnaire and results were analysed using the Wilcoxin Signed Rank Test in SPSS version 21. Content analysis of completed workbooks and a survey (n=5) of opinions regarding the workbook was undertaken.

Key Findings- No pre-post-test difference was found in the Nursing Competence Questionnaire with p=0.058 for the total scale. However, as this was a pilot, the study was under-powered and all students’ scores improved. Content analysis of the workbook found that 3 of the 5 participants completed all components of the workbook, with a mean of 1051 words used (Std dev 281.8). Through the survey students reported the workbook as a useful guide when undertaking a patient assessment.

Conclusions: The workbook showed potential as an intervention to help support development of nursing students’ assessment skills in practice.

Carers and Co-Production: Enabling Expertise through Experience?

Purpose To provide a brief overview of the literature to date which has focussed on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration. Design The paper presents key outcomes from studies which have explicitly attempted to introduce co-produced care in addition to specific tools designed to encourage co-production within mental health services. The paper debates the cultural and ideological shift required for staff, service users and family members to undertake co-produced care and outlines challenges ahead with respect to service redesign and new roles in practice. Findings Informal carers (family and friends) are recognised as a fundamental resource for mental health service provision, as well as a rich source of expertise through experience, yet their views are rarely solicited by mental health professionals or taken into account during decision-making. This issue is considered alongside new policy recommendations which advocate the development of co-produced services and care. Research Limitations Despite the launch of a number of initiatives designed to build on peer experience and support, there has been a lack of attention on the differing dynamic which remains evident between healthcare professionals and people using mental health services. Co-production sheds a light on the blurring of roles, trust and shared endeavour (Slay and Stephens, 2013) but, despite an increase in peer recovery workers across England, there has been little research or service development designed to focus explicitly on this particular dynamic. Practical Implications Despite these challenges, coproduction in mental healthcare represents a real opportunity for the skills and experience of family members to be taken into account and could provide a mechanism to achieve the ‘triangle of care’ with input, recognition and respect given to all (service users, carers, professionals) whose lives are touched by mental distress. However, lack of attention in relation to carer perspectives, expertise and potential involvement could undermine the potential for coproduction to act as a vehicle to encourage person-centred care which accounts for social in addition to clinical factors. Social Implications The families of people with severe and enduring mental illness (SMI) assume a major responsibility for the provision of care and support to their relatives over extended time periods (Rose et al, 2004). Involving carers in discussions about care planning could help to provide a wider picture about the impact of mental health difficulties, beyond symptom reduction. The ‘co-production of care’ reflects a desire to work meaningfully and fully with service users and carers. However, to date, little work has been undertaken in order to coproduce services through the ‘triangle of care’ with carers bringing their own skills, resources and expertise. Originality/Value This paper debates the current involvement of carers across mental healthcare and debates whether co-production could be a vehicle to utilise carer expertise, enhance quality and satisfaction with mental healthcare. The critique of current work highlights the danger of increasing expectations on service providers to undertake work aligned to key initiatives (shared decision-making, person-centred care, co-production), that have common underpinning principles but, in the absence of practical guidance, could be addressed in isolation rather than as an integrated approach within a ‘triangle of care’.

Using a whole person approach to support people with cancer: a longitudinal, mixed methods service evaluation

Introduction: Improved models of care are needed to meet all the support needs of people with cancer, which encompass psychological, emotional, physical, spiritual, sexual, occupational, social and existential needs. The aim of this paper is to (1) evaluate short and long-term impacts of using a whole person approach to support people with cancer on the Living Well with the Impact of Cancer Course (LWC); (2) use these data to inform strategic decisions about future service provision at Penny Brohn UK. Methods: Longitudinal mixed-methods service evaluation (n=135). Data collected included health related quality of life (HRQoL) (FACIT-SpEx); Concerns (types and severity - MYCaW); lifestyle behaviour (bespoke questionnaire) and participants’ experiences over 12 months post course. Results: Statistically and clinically significant improvements from baseline - 12 months in severity of MYCaW Concerns (n=64; p<0.000) and mean total HRQoL (n=66; p<0.000). The majority of MYCaW concerns were ‘psychological and emotional’ and about participants’ wellbeing. Spiritual, emotional and functional wellbeing contributed most to HRQoL improvements at 12 months. Barriers to maintaining healthy lifestyle changes included lack of support from family and friends, time constraints, and returning to work. 3-6 months post-course was identified as the time when more support was most likely to be needed. Conclusions: Using a whole person approach for the LWC enabled the needs of participants to be met, and statistically and clinically significant improvements in HRQoL and MYCaW Concerns were reported. Qualitative data analysis explored how experiencing whole person support enabled participants to make and sustain healthy lifestyle changes associated with improved survivorship. Barriers experienced to making health behaviour change were also identified. These data then informed wider and more person-centred clinical provision to increase the maintenance of positive long-term behaviour changes. Comparison of whole person approaches to cancer treatment and support and standard care are now urgently needed.

La description de la pratique interprofessionnelle centrée sur le patient au cours de la trajectoire de soins en oncologie

Les orientations ministérielles du Québec encouragent une pratique interprofessionnelle centrée sur le patient (ICP), au cours de la trajectoire de soins, pour soutenir les patients diagnostiqués d’un cancer. Cette pratique assure une meilleure communication entre les professionnels et la sécurité des patients, et améliore les soins et l'accès aux services (Santé Canada, 2010). Cependant, les études rapportent généralement les perceptions des professionnels en regard des soins et des services et informent sur les facteurs organisationnels, procéduraux et relationnels liés à cette pratique. Considérant l’importance de celle-ci, il semble nécessaire de la documenter selon les perceptions de patients, de proches et de professionnels dans un contexte réel de soins. L’étude avait pour but de décrire la pratique ICP au cours de la trajectoire de soins en oncologie. Pour soutenir cette description, l’adaptation du cadre de référence Person centred nursing framework (PCNF) de McCormack et McCance (2010) a été réalisée en incluant l’interprofessionnalité, telle que définie par Couturier (2009) et utilisée. Une étude qualitative de cas multiples a été réalisée auprès de deux équipes interprofessionnelles d’un centre hospitalier universitaire de la région de Montréal. L’échantillon (N=31) était composé de 8 patients, 3 proches, 18 professionnels et 2 gestionnaires. Vingt-huit entrevues ont été réalisées ainsi que 57,6 heures d’observation d’activités cliniques auxquelles participait le patient (ex., rendez-vous, traitement). Les résultats suggèrent que la pratique ICP des équipes est empreinte d’un dualisme de cultures (culture centrée sur le traitement versus culture davantage centrée sur le patient). De plus, les équipes étudiées ont présenté une pratique ICP fluctuante en raison de l’influence de nombreux facteurs tels le « fonctionnement de l’équipe », l’« environnement physique » et le « positionnement » des patients et des professionnels. Les résultats ont aussi suggéré que le déploiement des équipes de soins se fait à intensité variable au cours de la trajectoire. Il a été soulevé que les patients ont pu faire l’expérience d’une pratique ICP changeante, de bris dans la continuité des soins et de transition difficile entre les différentes périodes de la trajectoire. De plus, la description d’une pratique ICP souhaitée par les patients, leurs proches et les professionnels propose un accompagnement respectant le rythme du patient, sans prédominance des valeurs du professionnel ainsi qu’une assiduité dans la collaboration des membres de l’équipe. Cette étude suggère que les sciences infirmières peuvent ajouter aux connaissances interprofessionnelles actuelles en utilisant une perspective centrée sur le patient, perspective cohérente avec ses valeurs disciplinaires. De plus, de nombreuses pistes de réflexion sont proposées pour la pratique, la recherche, la gestion et la formation.

Older people's experience of utilisation and administration of medicines in a health- and social care context

BACKGROUND: People living at home who lack ability to manage their medicine are entitled to assistance to improve adherence provided by a home care assistant employed by social care. AIM: The aim was to describe how older people with chronic diseases, living at home, experience the use and assistance of administration of medicines in the context of social care. DESIGN: A qualitative descriptive study. METHODS: Ten participants (age 65+) living at home were interviewed in the participants' own homes. Latent content analysis was used. FINDINGS: The assistance eases daily life with regard to practical matters and increases adherence to a medicine regimen. There were mixed feelings about being dependent on assistance; it interferes with self-sufficiency at a time of health transition. Participants were balancing empowerment and a dubious perception of the home care assistants' knowledge of medicine and safety. Physicians' and district nurses' professional knowledge was a safety guarantee for the medicine process. CONCLUSIONS: Assistance eases daily life and medicine regimen adherence. Dependence on assistance may affect self-sufficiency. Perceived safety varied relating to home care assistants' knowledge of medicine. RELEVANCE TO CLINICAL PRACTICE: A well-functioning medicine assistance is crucial to enable older people to remain at home. A person-centred approach to health- and social care delivery is efficient and improve outcome for the recipient of care.

The tri-focal model of care : Advancing the teaching-nursing home concept

Providing residential aged care is challenging because of the complexity of residents' health status, difficulties recruiting and retaining skilled staff, and financial and regulatory constraints. This paper discusses some of these challenges and describes an innovative model of care, termed 'The Tri-focal model of care'. This model was developed based on the concepts of 'partnership-centred care', 'positive work environment' and the need for evidence-based practice to underpin all aspects of care. It is envisaged that the implementation of this model will provide a rich learning environment that advances the teaching-nursing home concept and the quality of residential aged 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.

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.

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.

Assessing communication in people with severe-profound disabilities: co-constructing competence

The recent focus on a human rights agenda in Australia has highlighted the vulnerability of people who have little or no speech in gaining access to their communication rights. This paper discusses the complexities of supporting communication for people with severe–profound disabilities within a framework of human rights. People with severe–profound intellectual disabilities are often considered not only unable to speak, but also unable to communicate. This preconception has been refuted and legislation enacted to protect the communication rights of people with severe–profound disabilities. In this paper we present an overview of good communication practices for people with severe–profound intellectual disabilities. Such practice consists of collaborative and transactional assessment and intervention supports, as exemplified in emerging models of supported and person-centred decision-making.