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.

Effectiveness of personal planning for residents re-entering the community during the facility initiative in Ontario

This paper reports on the relocation of people with intellectual disabilities (ID) from large-scale provincially run institutions that took place in Ontario as part of the Facility Initiative. Three case studies were examined in order to report on this process as experienced by those who lived and worked through it. Specifically, the planning process conducted by the Ministry of Community and Social Services (MCSS) to assist each person with hislher transition to community living was examined using the current standard of practice in person- centered planning approaches. Effectiveness was evaluated as the ability to apply a person-centered approach across settings and people, as well as what factors facilitated or hindered its application. Results show that, in general, the personal plans do not appear to reflect the pre-transition experience of the person. Also, the transitional planning process did not appear person-centered nor facilitate further person-centered planning in the community.

A multicentre randomized controlled trial of an empowerment-inspired intervention for adolescents starting continuous subcutaneous insulin infusion : a study protocol

Background. Continuous subcutaneous insulin infusion (CSII) treatment among children with type 1 diabetes is increasing in Sweden. However, studies evaluating glycaemic control in children using CSII show inconsistent results. Omitting bolus insulin doses using CSII may cause reduced glycaemic control among adolescents. The distribution of responsibility for diabetes self-management between children and parents is often unclear and needs clarification. There is much published support for continued parental involvement and shared diabetes management during adolescence. Guided Self-Determination (GSD) is an empowerment-based, person-centred, reflection and problem solving method intended to guide the patient to become self-sufficient and develop life skills for managing difficulties in diabetes self-management. This method has been adapted for adolescents and parents as Guided Self-Determination-Young (GSD-Y). This study aims to evaluate the effect of an intervention with GSD-Y in groups of adolescents starting on insulin pumps and their parents on diabetes-related family conflicts, perceived health and quality of life (QoL), and metabolic control. Here, we describe the protocol and plans for study enrolment. Methods. This study is designed as a randomized, controlled, prospective, multicentre study. Eighty patients between 12-18 years of age who are planning to start CSII will be included. All adolescents and their parents will receive standard insulin pump training. The education intervention will be conducted when CSII is to be started and at four appointments in the first 4 months after starting CSII. The primary outcome is haemoglobin A1c levels. Secondary outcomes are perceived health and QoL, frequency of blood glucose self-monitoring and bolus doses, and usage of carbohydrate counting. The following instruments will be used to evaluate perceived health and QoL: Disabkids, 'Check your health', the Diabetes Family Conflict Scale and the Swedish Diabetes Empowerment Scale. Outcomes will be evaluated within and between groups by comparing data at baseline, and at 6 and 12 months after starting treatment. Results and discussion. In this study, we will assess the effect of starting an insulin pump together with the model of Guided Self-Determination to determine whether this approach leads to retention of improved glycaemic control, QoL, responsibility distribution and reduced diabetes-related conflicts in the family. Trial registration: Current controlled trials: ISRCTN22444034

Responding to the ageing profile of emergency department patients

Background
Older people with acute superimposed on chronic health problems are becoming a core aspect of emergency department (ED) caseload. This project explored the ED experience from the perspective of older patients and their carers.

Method
A convenience sample of thirty participants was recruited across three participating EDs: tw o metropolitan and one regional. The project utilised two approaches to data collection: 1) an observation approach where a project officer observed participants from the time of ED presentation until discharge, or for up to six hours; and 2) a subsequent interview was conducted with the participant and their carer within a week of the ED presentation. Data from both sources were integrated, and independently thematically analysed by two members of the team.

Results
Thirty participants aged over 65 were recruited. Their average age was 77.1 (sd=6.7) years, 59% w ere female, and 74% were triage category 1- 3 (indicating moderate/high acuity). Participants spent on average 7 hours 47 minutes in the ED, with 50% discharged home, 43% admitted to general wards or MAPU, and 7% discharged to residential care/hospice. Key themes in the factors influencing the patient experience and examples of quality care were identified, along with opportunities to improve the capacity for EDs to be “older person friendly”, and “person-centred.” Challenges include improving the effectiveness of communication between staff and patients/carers (including issues around people from culturally and linguistically diverse backgrounds), availability of allied health professionals to assist with discharge planning, and a tendency for older people not to seek ED care until the health problem was severe. Patient exemplars highlight key themes.

Discussion and implications
Results of the project highlight positive aspects of emergency department care for older people and inform targets for improvement strategies. These can be used to drive ongoing improvements in care for older people presenting to EDs.

Translating person-centered care into practice: a comparative analysis of motivational interviewing, illness-integration support, and guided self-determination

OBJECTIVE: Person-centred care [PCC] can engage people in living well with a chronic condition. However, translating PCC into practice is challenging. We aimed to compare the translational potentials of three approaches: motivational interviewing [MI], illness integration support [IIS] and guided self-determination [GSD]. METHODS: Comparative analysis included eight components: (1) philosophical origin; (2) development in original clinical setting; (3) theoretical underpinnings; (4) overarching goal and supportive processes; (5) general principles, strategies or tools for engaging peoples; (6) health care professionals' background and training; (7) fidelity assessment; (8) reported effects. RESULTS: Although all approaches promoted autonomous motivation, they differed in other ways. Their original settings explain why IIS and GSD strive for life-illness integration, whereas MI focuses on managing ambivalence. IIS and GSD were based on grounded theories, and MI was intuitively developed. All apply processes and strategies to advance professionals' communication skills and engagement; GSD includes context-specific reflection sheets. All offer training programs; MI and GSD include fidelity tools. CONCLUSION: Each approach has a primary application: MI, when ambivalence threatens positive change; IIS, when integrating newly diagnosed chronic conditions; and GSD, when problem solving is difficult, or deadlocked. PRACTICE IMPLICATIONS: Professionals must critically consider the context in their choice of approach.

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.

Tackling disadvantage through student-centred learning - exploring 'Worlds of Work' in the Melbourne CBD

As the educational landscape increasingly mirrors deepening socio-economic cleavages within Australian society, the disparity in educational outcomes has been identified as one of the biggest challenges confronting secondary schooling. In contrast with most OECD countries, family background remains the most important determinant of educational achievement in Australia. More and more, schools are defined by location, reinforcing what has been dubbed the 'circular pattern of disadvantage'. At the same time, recognition of strong links between outcomes, socio economic status and location has elicited growing calls for systematic redefining of learning experiences and the public education framework. Focus on flexible, rigorous, community-oriented, person-centred learning opportunities has predicated multiple mentoring and youth schemes and has guided policy. Recognition of the need to re-engage Year 9 and 10 students underpinned development of VELS, for instance; it has also directed the programming priorities of Education Foundation Australia (EFA). This paper will discuss first, how schools perceive the programs have made a difference to both individual students and the curriculum offered in the schools, and second, how the experiences and activities provided through the program have changed the expectations and aspirations that many of the participants have in regard to how they perceive their future, their engagement with school and their careers. Both City Centre and Worlds of Work (WOW) program have received a very positive student response to real world activities that have demonstrably enhanced the development of reflective processes, interpersonal and social skills and social networks. Practical outcomes have included self-organised work experience, the development of mentor relationships and the re-engagement of some students with the schooling process. Interview data confirmed EFA's assessment that its programs have greatest impact when integrated into a school's curriculum rather than as "stand alone" electives.

The quality of the physical environment and its association with activities and well-being among older people in residential care facilities

The physical environment can influence older people’s health and well-being, and is often mentioned as being an important factor for person-centred care. Due to high levels of frail health, many older people spend a majority of their time within care facilities and depend on the physical environment for support in their daily life. However, the quality of the physical environment is rarely evaluated, and knowledge is sparse in terms of how well the environment meets the needs of older people. This is partly due to the lack of valid and reliable instruments that could provide important information on environmental quality. Aim: The aim of this thesis was to study the quality of the physical environment in Swedish care facilities for older people, and how it relates to residents’ activities and well-being. Methods: The thesis comprises four papers where both qualitative and quantitative methods were used. Study I involved the translation and adaptation of the Sheffield Care Environment Assessment Matrix (SCEAM) into a Swedish version (S-SCEAM). Several methods were used including forward and backward translation, test of validity via expert consultation and reliability tests. In Study II, S-SCEAM was used to assess the quality of the environment, and descriptive data were collected from 20 purposively sampled residential care facilities (RCFs). Study III was a comparative case study conducted at two RCFs using observations, interviews and S-SCEAM to examine how the physical environment relates to older people’s activities and interactions. In study IV, multilevel modeling was used to determine the association between the quality of the physical environment and the psychological and social well-being of older people living in RCFs. The data in the thesis were analysed using qualitative content analysis, and descriptive, bivariate and multilevel statistics. Results: A specific result was the production of the Swedish version of SCEAM. The instrument contains 210 items structured into eight domains reflecting the needs of older people. When using S-SCEAM, the results showed a substantial variation in the quality of the physical environment between and within RCFs. In general, private apartments and dining areas had high quality, whereas overall building layout and outdoor areas had lower quality. Also, older people’s safety was supported in the majority of facilities, whereas cognitive support and privacy had lower quality. Further, the results showed that environmental quality in terms of cognitive support was associated with residents’ social well-being. Specific environmental features, such as building design and space size, were also noted, through observation, as influencing residents’ activities, and several barriers were found that seemed to restrict residents’ full use of the environment. Conclusions: This thesis contributes to the growing evidence-based design field. The S-SCEAM can be used in future research on the association between the environment and people’s health and well-being. The instrument could also serve as a guide in the planning and design process of new RCFs.

Negotiating : experiences of community nurses when contracting with clients

A community nurse is required to have excellent interpersonal, teaching, collaborative and clinical skills in order to develop effective individualised client care contracts. Using a descriptive qualitative design data was collected from two focus groups of fourteen community nurses to explore the issues surrounding negotiating and contracting client care contracts from the perspective of community nurses. Thematic analysis revealed three themes: ‘assessment of needs’, ‘education towards enablement’, and ‘negotiation’. ‘Assessment of needs’ identified that community nurses assess both the client’s requirements for health care as well as the ability of the nurse to provide that care. ‘Education towards enablement’ described that education of the client is a common strategy used by community nurses to establish realistic goals of health care as part of developing an ongoing care plan. The final theme, ‘negotiation’, involved an informed agreement between the client and the community nurse which forms the origin of the care contract that will direct the partnership between the client and the nurse. Of importance for community nurses is that development of successful person-centred care contracts requires skillful negotiation of care that strikes the balance between the needs of the client and the ability of the nurse to meet those needs.

Incidental treatment effects of CBT on suicidal ideation and hopelessness

Background: Depression and alcohol misuse are among the most prevalent diagnoses in suicide fatalities. The risk posed by these disorders is exacerbated when they co-occur. Limited research has evaluated the effectiveness of common depression and alcohol treatments for the reduction of suicide vulnerability in individuals experiencing comorbidity. Methods: Participants with depressive symptoms and hazardous alcohol use were selected from two randomised controlled trials. They had received either a brief (1 session) intervention, or depression-focused cognitive behaviour therapy (CBT), alcohol-focused CBT, therapist-delivered integrated CBT, computer-delivered integrated CBT or person-centred therapy (PCT) over a 10-week period. Suicidal ideation, hopelessness, depression severity and alcohol consumption were assessed at baseline and 12-month follow-up. Results: Three hundred three participants were assessed at baseline and 12 months. Both suicidal ideation and hopelessness were associated with higher severity of depressive symptoms, but not with alcohol consumption. Suicidal ideation did not improve significantly at follow-up, with no differences between treatment conditions. Improvements in hopelessness differed between treatment conditions; hopelessness improved more in the CBT conditions compared to PCT and in single-focused CBT compared to integrated CBT. Limitations: Low retention rates may have impacted on the reliability of our findings. Combining data from two studies may have resulted in heterogeneity of samples between conditions. Conclusions: CBT appears to be associated with reductions in hopelessness in people with co-occurring depression and alcohol misuse, even when it is not the focus of treatment. Less consistent results were observed for suicidal ideation. Establishing specific procedures or therapeutic content for clinicians to monitor these outcomes may result in better management of individuals with higher vulnerability for suicide.

What keeps nurses busy in the mental health setting?

The foundation of mental health nursing has historically been grounded in an interpersonal, person-centred process of health care, yet recent evidence suggests that the interactional work of mental health nursing is being eroded. Literature emphasizes the importance of person-centred care on consumer outcomes, a model reliant upon the intimate engagement of nurses and consumers. Yet, the arrival of medical interventions in psychiatry has diverted nursing work from the therapeutic nursing role to task-based roles delegated by medicine, distancing nurses from consumers. This study used work sampling methodology to observe the proportion of time nurses working in an inpatient mental health setting spend in the activities of direct care, indirect care and service-related activities. Nurses spent 32 of their time in direct care, 52% in indirect care and 17% in service-related activities. Mental health nurses need to re-establish their therapeutic availability to maximize consumer experiences and outcomes.

Ecologies of housing and underlying assumptions of vulnerability

Purpose This paper is informed by a study that aimed to understand the difficulties in implementing models of housing, and to help address the lack of accessible and affordable private housing for people with disability in Australia. In responding to this aim, the study formulated an ecological map of housing models, which are examined in this paper in terms of their underlying assumptions of vulnerability. Design/methodology/approach The study involved explanation building, using a multiple case study approach, informed theoretically by an ecological framework. It included organisations, families and individuals with disability. Findings For the purpose of this paper, the study revealed a direct relationship between the nature of the housing models proposed, and assumptions of vulnerability. In the context of the study findings, the paper suggests that attempts to address individual housing needs are more likely to achieve a positive outcome when they are person driven, from a premise of ability rather than disability. Overall, it invites a ‘universalistic’ way of conceptualising housing issues for people with disability that has international relevance. Practical implications This paper highlights how assumptions of vulnerability shape environmental responses, such as housing, for people with disability. Originality/value This paper is based on a study that reconciled a person-centred philosophy with an ecological appreciation of the external and internal factors impacting housing choice for people with disability.