Exploring psychosocial interventions for people with dementia that enhance personhood and relate to legacy- an integrative review

Background: Epidemiological predictions suggest that dementia will continue to rise and that this will have social and economic ramifications. Effective interventions, beyond pharmacological management are needed. Psychosocial interventions have largely been investigated in relation to carers of people with dementia, or with regards to their ability to manage dementia symptoms, improve cognition, and reduce challenging behaviour. However, since dementia is a life-limiting illness and people with dementia are at risk of having their personhood compromised, psychosocial interventions should seek to enhance personhood, and offer the potential for the person to leave a legacy. Methods: An integrative review was carried out to identify, assess, appraise and synthesise studies featuring interventions, which relate to both personhood and legacy. Search strategies were developed in key databases: MEDLINE; PsycINFO; Embase; Joanna Briggs Institute; CINAHL; Cochrane Database of Systematic Reviews; ASSIA. Grey literature was also identified through free-text searches. Results: Thirty six articles were included in the final review, these were tabulated and were assessed based on how the intervention related to personhood and legacy. Classification resulted in three themes being identified: Offering aspects of legacy; Acknowledging the person behind the patient; Facilitating meaningful engagement. Generally, personhood aspects of interventions were well reported, but further research is required to explore legacy potential of psychosocial interventions for people with dementia. Conclusion: The integrative review provides an overview and exploration of an under-researched area, and provides directions for future research, which will help expand the evidence base and ultimately help improve patient care for people with dementia and their families

Decision making in mental health team meetings

Background: Single point of access meetings represent a critical juncture in the lives of mental health clients. The decision-making process undertaken by mental health professionals during this time is therefore crucial. Method: Glaserian grounded theory, with observations and interviews through theoretical sampling, was used to investigate the decision making of attendees. Findings: A basic social process named handling role boundaries emerged, consisting of four phases: recognising, positioning, weighing up and balancing. Conclusion: Handling role boundaries is an innovative, sociological theory that allows conceptual understanding to show how personality traits contribute to the discussions and decisions, as well as professional roles. These need to be managed effectively to make decisions in a limited time frame. Handling role boundaries explains how this is done in a local mental health trust

An end-of-life care nurse service for people with COPD and heart failure: stakeholders' experiences

Background: End-of-life care (EOLC) has historically been associated with cancer care. However, demographic changes indicate that future provision must also cater for other long term conditions (LTC). An EOLC-LTC service, delivered by palliative care nurses, is currently being piloted in one area in the East Midlands with patients with cardiac and respiratory disease. In order to inform future commissioning, it is important to gain the views and experiences of those involved with the service. Aims: This study aimed to explore patients, and their partners, views and experiences of the EOLC-LTC service. Methods: Semi-structured interviews were used as part of a case study design, involving six cases. Each case consisted of the patient, their nominated family member/carer and key healthcare professionals involved in their care as identified by the patient. This paper reports on the findings from the interviews conducted with the six patients and their family member/carers. Data were analysed thematically. Results: From the interviews, the following themes were identified: experiences managing a long term cardio-respiratory condition, the nurse service, building a close/therapeutic relationship and fragmentation and integration. Conclusions: This study has shown that the EOLC-LTC service is welcomed and highly regarded by patients and their family members/carers. Further studies are required to explore the views and experiences of other key stakeholders and to evaluate how well the pilot operates within the wider care pathway

Cracking the code: a personal journey of learning Glaserian grounded theory

My PhD study which began in 2009 focused on the decision-making behaviors of mental health professionals, as they attended a “Single Point of Access” meeting. These meetings are set in community mental health services and involve professionals from an array of professional backgrounds discussing client cases, based on received letters from general practitioners. The general practitioners write these letters seeking advice and direction as to which mental health services the client should be sent to, in response to their needs. On occasions, some general practitioner letters are addressed to a specific person attending the meeting; at other times, they are addressed generally to the whole team. The Single Point of Access meetings house community mental health team members and representatives from more specialized services. The business and interactions of this collection of multidisciplinary professionals provided a useful opportunity to apply a classical grounded theory approach. With Single Point of Access meetings being relatively new at the time of study, discovering, describing, and conceptualizing the decision-making process inherent in these meetings were exciting prospects. After 4 years of study, I produced a grounded theory from my data collection and analysis, which was named “Handling Role Boundaries,” highlighting how these professionals manage and work with multiple roles to bring out the strength of the team and expedite the decision-making process. This case study conveys my personal journey from copious data to Handling Role Boundaries. I present the journey as a learning process, denoted in an “ABCD” format

"Gateway to the gatekeepers", single point of access meetings: evaluating the client case referral procedure within an NHS Trust

This ESRC funded CASE studentship PhD project provides a comprehensive investigation into the referral allocation process within an NHS Trust’s adult mental health facilities, known as Single Point of Access (SPA) meetings. These meetings provide a multidisciplinary environment in which mental health practitioners consider client referrals in the form of letters from, primarily, General Practitioners (GPs) and direct them to appropriate services and interventions. Participants in these meetings can be seen as gatekeepers authorising access to other mental health services. The study was formally identified by NHS Research Ethics procedures as a service evaluation. From an academic perspective it is sociological research heavily informed by Glaserian Grounded Theory (GT) methodology. This approach has uncovered an internal Basic Social Process (BSP) underpinning SPA meetings. It has been named “Handling Role Boundaries”, and it describes how SPA meeting attendees endeavour to work together as they make crucial decisions about clients. Initial research plans included the collection and evaluation of quantitative data which would assess the relative validity of SPA meeting decisions. Unfortunately the quality of available data proved insufficient for this purpose. This provided brief insight into tensions between administrative systems and the real life mechanisms of SPA meetings. Overall, the unfulfilled evaluative purposes of the study provided an opportunity to focus more on clarifying the BSP underpinning SPA meetings. Also explored is how this BSP has wider implications for an understanding of how “mental health difficulties” are framed and provided for. The thesis concludes that Handling Role Boundaries is a highly innovative theory offering major contributions to understanding one social space of mental health professionals. Furthermore, it offers plentiful scope for further research and will be appropriate for many avenues of dissemination

An end-of-life care nurse service for people with COPD and heart failure: stakeholders' experiences

Background: End-of-life care (EOLC) has historically been associated with cancer care. However, demographic changes indicate that future provision must also cater for other long term conditions (LTC). An EOLC-LTC service, delivered by palliative care nurses, is currently being piloted in one area in the East Midlands with patients with cardiac and respiratory disease. In order to inform future commissioning, it is important to gain the views and experiences of those involved with the service. Aims: This study aimed to explore patients, and their partners, views and experiences of the EOLC-LTC service. Methods: Semi-structured interviews were used as part of a case study design, involving six cases. Each case consisted of the patient, their nominated family member/carer and key healthcare professionals involved in their care as identified by the patient. This paper reports on the findings from the interviews conducted with the six patients and their family member/carers. Data were analysed thematically. Results: From the interviews, the following themes were identified: experiences managing a long term cardio-respiratory condition, the nurse service, building a close/therapeutic relationship and fragmentation and integration. Conclusions: This study has shown that the EOLC-LTC service is welcomed and highly regarded by patients and their family members/carers. Further studies are required to explore the views and experiences of other key stakeholders and to evaluate how well the pilot operates within the wider care pathway

"Gateway to the gatekeepers", single point of access meetings: evaluating the client case referral procedure within an NHS Trust

This ESRC funded CASE studentship PhD project provides a comprehensive investigation into the referral allocation process within an NHS Trust’s adult mental health facilities, known as Single Point of Access (SPA) meetings. These meetings provide a multidisciplinary environment in which mental health practitioners consider client referrals in the form of letters from, primarily, General Practitioners (GPs) and direct them to appropriate services and interventions. Participants in these meetings can be seen as gatekeepers authorising access to other mental health services. The study was formally identified by NHS Research Ethics procedures as a service evaluation. From an academic perspective it is sociological research heavily informed by Glaserian Grounded Theory (GT) methodology. This approach has uncovered an internal Basic Social Process (BSP) underpinning SPA meetings. It has been named “Handling Role Boundaries”, and it describes how SPA meeting attendees endeavour to work together as they make crucial decisions about clients. Initial research plans included the collection and evaluation of quantitative data which would assess the relative validity of SPA meeting decisions. Unfortunately the quality of available data proved insufficient for this purpose. This provided brief insight into tensions between administrative systems and the real life mechanisms of SPA meetings. Overall, the unfulfilled evaluative purposes of the study provided an opportunity to focus more on clarifying the BSP underpinning SPA meetings. Also explored is how this BSP has wider implications for an understanding of how “mental health difficulties” are framed and provided for. The thesis concludes that Handling Role Boundaries is a highly innovative theory offering major contributions to understanding one social space of mental health professionals. Furthermore, it offers plentiful scope for further research and will be appropriate for many avenues of dissemination

Patient reported outcome measures for measuring dignity in palliative and end of life care : a scoping review

BACKGROUND: Patient reported outcome measures are frequently used standard questionnaires or tools designed to collect information from patients regarding their health status and care. Their use enables accurate and relevant insight into changes in health, quality of life, and symptom severity to be acquired. The purpose of this scoping review was to identify PROMs that had been subject to rigorous development and were suitable for use in palliative and end of life care for clinical practice and/or research purposes. The review had a specific focus on measures which could be used to assess perceptions of dignity in these contexts. METHODS: A scoping review of English-language papers published between 2005 and 2015. Searches were devised in conjunction with an information science specialist and were undertaken in Medline; PsycINFO; EMBASE; CINAHL; Social Science Citation Index; ASSIA; CENTRAL; CDSR; DARE; HTA; Oxford PROM Bibliography; PROQOLID, using dignity related terms such as personhood; dignity or dignified; patient-centred care; which were linked (via the Boolean operator "AND") to care-related terms such as terminal care; hospice care; palliative care; end of life. Papers were assessed against inclusion criteria and appraised for quality. RESULTS: The search strategy produced an initial 7845 articles. After three rounds of eligibility assessment, eight articles discussing eight patients reported outcome measures were found to meet the inclusion criteria and were included in the final review. These underwent a thorough critical appraisal process. All seven studies were empirical research focused on the development and testing of a PROM. CONCLUSIONS: The eight patient reported outcome measures had all undergone some psychometric testing, and covered dignity aspects suggesting that they could be considered for use for research purposes to assess dignity. There were also indications that some could be implemented into a clinical setting. However, each measure had limitations and scope for further development

Investigating the barriers and facilitators to implementing Mental Health First Aid in the workplace: a qualitative study

Purpose: There has been little research into the use and efficacy of Mental Health First Aid across UK workplaces. The present study investigated the implementation of MHFA across six UK organisations, identifying key barriers and facilitators.Design: Twenty-seven workplace representatives were recruited from six organisations through purposive sampling and took part in semi-structured interviews exploring their experiences of workplace MHFA. The data underwent thematic analysis, identifyingkey themes around implementation.Findings: Implementation varied across organisations, including different reasons for initial interest in the programme, and variable ways that MHFA-trained employees operated post-training. Key barriers to successful implementation included negative attitudes around mental health, the perception that MHFA roles were onerous, and employees’ reluctance to engage in the MHFA programme. Successful implementation was perceived to be based on individual qualities of MHFA instructors and good practice demonstrated by trained individuals in the workplace. The role of the innerorganisational setting and employee characteristics were further highlighted as barriers and facilitators to effective implementation.Research implications: MHFA is a complex intervention, presenting in different ways when implemented into complex workplace settings. As such, traditional evaluation methods may not be appropriate for gaining insights into its effectiveness. Future evaluations of workplace MHFA must consider the complexity of implementing andoperationalising this intervention in the workplace.Originality: This study is the first to highlight the factors affecting successful implementation of MHFA across a range of UK workplaces