Managing Medicines for Patients Dying at Home: A Review of Family Caregivers' Experiences

Wilson, Eleanor; Caswell, Glenys; Turner, Nicola; Pollock, Kristian

doi:10.1016/j.jpainsymman.2018.08.019

Cited by 40 publications

(45 citation statements)

References 47 publications

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“…Many people report that they would have liked to provide in-home palliative and end-of-life care (PELC), but that constraints-particularly the lack of support and resources and the need to take time off work-prevented them from doing so (L'Appui pour les proches aidants d 'aînés, 2012). The literature review shows that, to prepare for their role, caregivers need more information concerning their loved one's illness, specifically as it pertains to the management of symptoms, the care to be provided (Funk et al, 2015) and the management and administration of medication (Wilson et al, 2018). To do this, caregivers need to be guided and informed by healthcare professionals (especially nurses) to reduce the anxiety related to the performance of these tasks (Sheehy-Skeffington et al, 2014).…”

Section: Introductionmentioning

confidence: 99%

Needs of caregivers of patients receiving in-home palliative and end-of-life care

Pepin¹,

Hébert²

2020

CONJ

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Home support for patients receiving in-home palliative and end-oflife care (PELC) is greatly dependent on the daily presence of caregivers and their involvement in care delivery. However, the needs of caregivers throughout the care trajectory of a loved one receiving in-home PELC are still relatively unknown. Objectives and methodology: This descriptive qualitative study focuses on the role of caregivers who have cared for a person receiving in-home PELC with the goal of describing their needs throughout the care trajectory. As part of this process, 20 caregivers took part in semi-directed interviews. Results and discussion: This study sheds light on the multiple needs of caregivers of loved ones receiving in-home PELC. These informational, emotional, and psychosocial needs show that caregivers experience changes in their relationship with their loved one. Spiritual needs were expressed through the meaning ascribed to the home support experience. And the practical needs expressed by participants highlight the importance of round-the-clock access to PELC services and the essential importance of nursing support. Conclusion: The needs of caregivers of loved ones receiving in-home PELC are not being met to a satisfactory degree. It is important to consider these needs in the care trajectory, alongside the needs of the patients themselves, in order to improve the support experience leading up to the bereavement period.

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Section: Introductionmentioning

confidence: 99%

Needs of caregivers of patients receiving in-home palliative and end-of-life care

Pepin¹,

Hébert²

2020

CONJ

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“…Until recently much of the literature on medication management focused on 'adherence' and 'compliance' and the implication for health outcomes 5,[25][26][27][28] . There is now a small but growing body of work that recognises the difficulties for patients 2 , their desire to limit the amount of medications they take as far as possible 17,29,30 and the burdens regimes can place on FCGs when a patient is dying at home 13,21,31 . Indeed, the international literature indicates that in other countries, particularly the United States and Australia, FCGs are regularly undertaking even more advanced tasks in administering sub-cutaneous medications prescribed for end of life symptoms [32][33][34][35][36] .…”

Section: Discussionmentioning

confidence: 99%

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

Wilson

Caswell

Latif

et al. 2020

Preprint

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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 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.

show abstract

Section: Discussionmentioning

confidence: 99%

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

Wilson

Caswell

Latif

et al. 2019

Preprint

Self Cite

View full text Add to dashboard Cite

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. Aim: 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.

show abstract

Managing Medicines for Patients Dying at Home: A Review of Family Caregivers' Experiences

Cited by 40 publications

References 47 publications

Needs of caregivers of patients receiving in-home palliative and end-of-life care

Needs of caregivers of patients receiving in-home palliative and end-of-life care

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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