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An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

ABSTRACT: BACKGROUND:The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. The study aimed to explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life. METHODS:Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties. RESULTS:Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use. CONCLUSIONS:The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, 'outside the box' thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.

SUBMITTER: Wilson E

PROVIDER: S-EPMC7216477 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

Wilson Eleanor E Caswell Glenys G Latif Asam A Anderson Claire C Faull Christina C Pollock Kristian K

BMC palliative care 20200511 1

<h4>Background</h4>The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. The study aimed to explore how healthcare professionals des ...[more]

PMID: 32393231

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Project description:BackgroundSymptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients' symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives' distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition.MethodsThe PeolcPSP data (n =?1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke's approach.ResultsFive themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary.ConclusionsThis study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.

Project description:BACKGROUND:Patient medicines helpline services (PMHS) have been established at some National Health Service (NHS) Trusts in England, with the aim of providing medicines-related support to patients after they have been discharged. Addressing an important knowledge gap, this qualitative study sought to examine pharmacy professionals' experiences and perceptions of their PMHS, including perceived benefits of the services, and areas for improvement. METHODS:Invitations to participate were sent to all NHS Trusts within England that were known to provide a PMHS (n?=?117). Semi-structured interviews were conducted via telephone with 34 pharmacy professionals who provide a PMHS (female?=?76%, male?=?24%; predominantly from Acute NHS Trusts, 76%). Interviews were audio-recorded and transcribed verbatim. The RE-AIM framework for evaluating interventions (RE-AIM: Reach, Effectiveness, Adoption, Implementation, Maintenance) informed the development of the interview schedule and the analysis of the data using framework analysis. RESULTS:Two themes were generated from the analysis: Resources, and Perceived benefits. Findings illustrate how providing a PMHS with limited resources (e.g., no specific funding, understaffed) negatively impacts the implementation, maintenance and reach of PMHS, and the ability to evidence their effectiveness. Despite operating with limited resources, PMHS are considered to have many benefits for patients and healthcare organisations (e.g., providing a 'safety net' to patients during the transfer of care period, providing reassurance to patients, helping to optimise patients' medicines, resolving medicines-related errors, reducing the burden upon other services, and providing the potential to improve hospital services based upon the content of enquiries). However, actually establishing the effectiveness and cost-effectiveness of PMHS is challenging due to perceived logistical difficulties of collecting data, and the difficulty measuring hard outcomes (e.g., prevention of readmissions). CONCLUSIONS:PMHS are typically perceived to be under-resourced, although they are considered by pharmacy professionals to have several benefits for service users and NHS Trusts. For those sites that provide a PMHS, we recommend using enquiry data to improve hospital services, and to share ideas for implementing and maintaining a PMHS within a resource-limited context. High-quality research is needed to evidence the effectiveness and cost-effectiveness of PMHS, which may help to secure adequate resources for this service in the future.

Project description:BackgroundEffective communication between healthcare professionals and relatives of patients approaching the end-of-life is vital to ensure patients have a 'good death'. To improve communication, it is important to first identify how this is currently being accomplished.AimTo review qualitative evidence concerning characteristics of communication about prognosis and end-of-life care between healthcare professionals and relatives of patients approaching the end-of-life.DesignQualitative systematic review (PROSPERO registration CRD42017065560) using thematic synthesis. Peer-reviewed, English language articles exploring the content of conversations and how participants communicated were included. No date restrictions were applied. Quality of included studies was appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research.Data sourcesAn electronic database search of CINAHL, MEDLINE, PsycINFO and EMBASE was performed.ResultsThirty-one papers were included. Seven themes were identified: highlighting deterioration; involvement in decision-making, post-decision interactional work, tailoring, honesty and clarity, specific techniques for information delivery and roles of different healthcare professionals. Varied levels of family involvement in decision-making were reported. Healthcare professionals used strategies to aid understanding and collaborative decision-making, such as highlighting the patient's deterioration, referring to patient wishes and tailoring information delivery. Doctors were regarded as responsible for discussing prognosis and decision-making, and nurses for providing individualized care.ConclusionFindings suggest training could provide healthcare professionals with these strategies to improve communication. Interventions such as question prompt lists could help relatives overcome barriers to involvement in decision-making. Further research is needed to understand communication with relatives in different settings and with different healthcare professionals.

Project description:ObjectivesTo identify priority medicines policy issues, including the 'use' and 'access to medicines' in Qatar.DesignIn this qualitative study, general inductive method was used and semi-structured exploratory interviews conducted.SettingStakeholders from a broad range of academic and healthcare practitioners in Qatar.ParticipantsExploratory, semi-structured interviews were conducted with 21 stakeholders throughout Qatar. The inclusion criteria include (a) participants working or involved in the Qatar's healthcare system, (b) participants having experience or working knowledge of medicine policy documents, different facets of it, use of medicines and access to medicines, (c) as well as participants well versed in the English language. It was intended to cover stakeholders from a broad range of healthcare and policy institutions in Qatar.Primary and secondary outcome measuresAll participants were involved in semi-structured, audio-recorded interviews, which were then transcribed verbatim, coded into NVivo V.12 and followed by thematic analysis to identify the common themes. Perceptions, experiences and opinions regarding Qatar's medicines policy issues were recorded.ResultsThis study found challenges related to the availability of pharmaceuticals in Qatar, including medicines registration process. There is no comprehensive national medicines policy in Qatar, however, there are a number of rules, regulations, policies and procedures in place. The community pharmacy services provided are mostly 'traditional' with less emphasis on pharmacists' extended roles and/or cognitive services. The study identifies several areas for improvement including extending the role of the pharmacist, improve the prescribing of antibiotics, medicines compliance and counselling for consumers, pharmacovigilance, implementation of generic medicines policies, as well as the need for a national health record database.ConclusionsThe findings suggest that in the last 20 years, Qatar has moved towards advancing healthcare; however, there are gaps and opportunities. The strategies need to be developed to resolve access to medicines issues, the priority being medicines registration, import and so on. With the rise of chronic diseases and a growing population, there is also a need to work to improve medicines adherence among patients.A national medicines policy should be developed through a consultative broad-based process in which prescribers, physicians, pharmacists and healthcare professionals be given a chance to contribute.

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An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

Publications

An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

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