Patient and service-related barriers and facitators to the acceptance and use of interventions to promote communication in health and social care: a realist review.

BACKGROUND: More people living into old age with dementia. The complexity of treatment and care, particularly those with multiple health problems, can be experienced as disjointed. As part of an evaluation of a 'healthcare passport' for people living with dementia we undertook a realist review of communication tools within health and social care for people living with dementia. AIMS: To explore how a 'healthcare passport' might work in the 'real world' of people living with dementia through a better understanding of the theoretical issues related to, and the contextual issues that facilitate, successful communication. METHODS: A realist review was considered the most appropriate methodology to inform the further development and evaluation of the healthcare passport. We undertook a purposive literature search related to communication tools to identify (a) underlying programme theories; (b) published reports and papers on their use in various healthcare settings; (c) evidence on barriers and facliitators of their use. RESULTS: Communication tools were noted as a way of improving communication and outcomes through: (1) improvement of service user autonomy; (2) strengthening the therapeutic alliance; and (3) building integrated care. However, while intuitively perceived to of benefit, evidence on their use is limited and key barriers to their acceptance and use include: (1) difficulties in clearly defining purpose, content, ownership and usage; (2) understanding the role of family caregivers; and (3) preparation among healthcare professionsals. CONCLUSION: Patient-held communication tools may be helpful to some people living with dementia but will require considerable preparation and engagement with key stakeholders.

Acceptability and use of a patient-held communication tool for people living with dementia: a longitudinal qualitative study.

OBJECTIVES: To assess the acceptability and use of a low-cost patient-held communication tool. DESIGN: Longitudinal qualitative interviews at three time points over 18 months and document content analysis. SETTING: Primary and community services. PARTICIPANTS: Twenty-eight dyads: People living with dementia in Northern Ireland and their informal carers. INTERVENTIONS: A patient-held healthcare 'passport' for people living with dementia. PRIMARY AND SECONDARY OUTCOMES: Acceptability and use of the passport-barriers and facilitators to successful engagement. RESULTS: There was a qualified appreciation of the healthcare passport and a much more nuanced, individualistic or personalised approach to its desirability and use. How people perceive it and what they actually do with it are strongly determined by individual contexts, dementia stage and other health problems, social and family needs and capacities. We noted concerns about privacy and ambivalence about engaging with health professionals. CONCLUSION: Such tools may be of use but there is a need for demanding, thoughtful and nuanced programme delivery for future implementation in dementia care. The incentivisation and commitment of general practitioners is crucial. Altering the asymmetrical relationship between professionals and patients requires more extensive attention.

Impact of a telephone-first consultation system in general practice.

PURPOSE OF THE STUDY: Increasing pressure on general practice prompts innovative change in service organisation. This study sought to evaluate the impact of introducing a telephone-first consultation system in a socioeconomically deprived population. STUDY DESIGN: An interrupted time series of preplanned outcomes for 2 years before and 1 year postintroduction of a telephone-first system was used to measure the volume and type of general practitioner (GP) consultations and the number of patients consulted per year. Emergency department (ED) and GP out-of-hours attendances, the number of outpatient referrals, and the number of requests for laboratory tests were measured as secondary outcomes. RESULTS: The telephone-first system was associated with a 20% increase in total GP consultations (telephone and face-to-face, effect estimate at 12 months, p=0.001). Face-to-face consultations decreased by 39% (p<0.001), while telephone consultations increased by 131% (p<0.001). The volume of individual patient requests for a GP consultation and the number of treatment room nurse consultations did not change. Secondary outcome measures showed no change in hospital outpatient referrals, number of requests for laboratory tests, and ED or GP out-of-hours attendances. CONCLUSIONS: A telephone-first system in a deprived urban general practice can decrease delays to GP-patient contacts. The number of patients seeking a medical intervention did not differ irrespective of the consultation system used. The telephone-first system did not affect GP out-of-hours, laboratory investigations or secondary care contacts.

The usefulness and acceptability of a personal health record to children and young people living with a complex health condition: A realist review of the literature.

BACKGROUND: There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly, CYP with life-limiting or life-threatening conditions are surviving into adulthood. Communication between CYP, their family, and health professionals can be challenging. The use of a personal health record (PHR) is one potential strategy for improving communication by promoting CYP's health advocacy skills. However, PHR implementation has proved difficult due to technical, organisational, and professional barriers. The aim of this realist review is to identify the factors, which help or hinder the use of PHRs with CYP living with a complex health condition. METHODS: Systematic realist review. Literature was sourced from six databases: Medline, Embase, CINAHL, PsychInfo, The Cochrane Library, and Science Direct (from 1946 to August Week 3 2018). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme tool. RESULTS: Nine articles were included. Contextual factors, which helped implementation, included the CYP having a high perception of need for a PHR and a high level of desire for self-management. Service providers and CYP need knowledge about the purpose and benefits of the PHR, and organisations need a dedicated person to facilitate PHR use. Mechanisms triggered by the PHR included improved understanding and knowledge of health care condition(s) for CYP, an increased feeling of control over condition(s), and more active engagement in their health care. Outcomes for CYP included improved self-advocacy and communication. CONCLUSION: Clearer definitions of which young people would benefit from using a PHR must be established to inform which organisations and service providers would be best suited to PHR implementation.

The evaluation of a healthcare passport to improve quality of care and communication for people living with dementia (EQuIP): a protocol paper for a qualitative, longitudinal study.

BACKGROUND: There is an urgent need for the development of simple communication tools that convey the strengths, assets, and healthcare needs of people living with dementia. A Healthcare Passport may improve communication with range of health and social support services, enhancing quality and continuity of care, and to permit a consideration of the challenges and how these might be managed effectively and compassionately. This study aims to evaluate the acceptability and use of this type of intervention for people living with dementia and their carers. METHODS/DESIGN: This is a qualitative longitudinal study informed by a critical realist review. The participants will be individuals identified as having mild-moderate dementia and informal carers. The in-depth interviews will occur at three points over the course of 18 months as they use the passport. This will be supplemented by analysis of the content of the passports and information from health and social care providers on the daily practicalities of using the passport in a range of healthcare settings. DISCUSSION: By using a critical realist review and a qualitative, longitudinal approach, the study allows for the assessment of a complex intervention in a manner which goes beyond evaluating the basic efficacy of the passport, but looking more deeply at how it worked, for whom, and in what context. It has the potential to develop new data on how interventions improve communication across a range of service providers, while encouraging health and social care professionals to respect and encourage the development of self-management and retention of personhood throughout the progression of life-limiting illnesses.

PA10†What i need you to know. building a collaborative communication tool.

BACKGROUND: During strategy consultation in Northern Ireland an "End of Life Care Passport" was suggested as a way to address myriad communication difficulties involved in living with evolving illness. AIM: To build a patient-owned communication tool to facilitate important conversations and capture key information as health changes. METHODS: Participatory action methods used to engage service users, carers, patient advocates, and healthcare professionals. Views harnessed via: face to face, email, telephone, via series of workshops. Iterative process of drafting, dissemination, evaluation, re drafting. Pilot version launched (350 disseminated): used for a 3 month evaluative period by 3 groups: living with dementia, with motor neurone disease, with advanced respiratory illness. Feedback widely sought from participating individuals and groups. RESULTS: The emergent tool(1) very different from originally envisaged. Key issues include widespread rejection of "End of Life Care Passport" (felt to be professionally based perspective); very high level of engagement with the process, imperative to develop a tool which focusses on language and communication needs of patient and carers rather than professionals. Emergent tool contains ten sections and brief explanatory content. Housed as A5 portable ring binder (e-version suggested), updated collaboratively by patient, carers, key supporters, professionals. CONCLUSION: Patients and carers face multiple communication difficulties negotiating changing health. At particular risk are those with rare illness and those whose capacity is limited due to illness, language or cultural barriers. There is a role for a communication tool which houses key evolving information, is completed collaboratively and patient owned and controlled. REFERENCE: http://www.rcgp.org.uk/rcgp-near-you/rcgp-northern-ireland/my-healthcare-passport.aspx.