scholarly journals Homecoming—Dignity Through Movement at the End of Life: A Qualitative Interview Study With Healthcare Professionals

2021 ◽  
pp. 104990912110178
Author(s):  
Fiona Cameron ◽  
Anna Janze ◽  
Anna Klarare
Keyword(s):  
Physical Activity ◽  
Palliative Care ◽  
Focus Group ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Qualitative Content Analysis ◽  
Main Theme ◽  
Difficult Situation ◽  
Qualitative Interview Study ◽  
Wide Range

Aim: To describe healthcare professionals’ and volunteers’ experiences of a pathway for movement on a hospice ward. Method: This was a qualitative study with an inductive approach. Data were collected in a hospice setting through 4 focus group interviews with healthcare professionals and volunteers (n = 12). The focus group participants varied in age, profession, and length of experience in palliative care. The interviews were audio recorded, transcribed and analyzed with qualitative content analysis. Results: Dignity through movement at the end of life was the main theme, complemented by 4 sub-themes. Two descriptive sub-themes: “A practical tool to facilitate physical activity” and “Companionship and goals give meaning to the day,” and 2 interpretative sub-themes: “Regaining control and having a choice” and “Feeling normal and alive” based on participants’ views of patient experiences. Significance of Results: Indications are that the pathway for movement addresses a wide range of experiences related to different aspects of being human in a difficult situation. Experiences of movement and physical activity can promote wellbeing, dignity, and a sense of feeling “at home” for patients within hospice care. The pathway for movement is simple to set up, offers access to appropriate physical activity and seems to benefit patients both in the early and later phases of palliative care.

scholarly journals General practitioners’ perceptions of best practice care at the end of life: a qualitative study

BJGP Open ◽  
2019 ◽  
Vol 3 (3) ◽  
pp. bjgpopen19X101660 ◽  
Author(s):  
Anne Herrmann ◽  
Mariko Carey ◽  
Alison Zucca ◽  
Lucy Boyd ◽  
Bernadette Roberts
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Best Practice ◽  
Qualitative Content Analysis ◽  
Care Delivery ◽  
Natural Extension ◽  
Family Needs ◽  
Qualitative Interview Study ◽  
Wide Range ◽  
Practice Care

BackgroundGPs can play a central role in palliative care delivery. However, little is known about their views on what constitutes best practice care at the end of life.AimTo explore, in a sample of Australian GPs, their perceptions of best practice palliative care and their ideal role in its delivery.Design & settingA qualitative interview study of 25 GPs practising in metropolitan and non-metropolitan locations in New South Wales, Australia.MethodSemi-structured telephone interviews were conducted. Data were analysed using qualitative content analysis.ResultsParticipants had a mean age of 51 years, and had practised between 3 and 38 years (mean 19 years). Best practice palliative care was perceived to be proactive and responsive to a wide range of patient and family needs. Many participants indicated a need for relational continuity, which involves GPs establishing a care pathway from diagnosis to palliation, coordinating care across the pathway, and collaborating with other healthcare providers. A number of participants perceived palliative care as a natural extension of primary care and indicated that best practice palliative care mainly requires experiential knowledge and good communication skills, rather than specialised medical knowledge. Participants listed a number of communication strategies to offer patients and their families choice and ongoing negotiation about the recommended treatments.ConclusionThis study provides novel in-depth insights into GPs’ perceptions of best practice palliative care. Future research should further investigate the identified features of care, and whether they can maximise the outcomes of patients and their families.

scholarly journals “We don’t want to sedate him” - A qualitative interview study on intentions when administering sedative drugs at the end of life in nursing homes and hospitals

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Sophie Meesters ◽  
Bettina Grüne ◽  
Claudia Bausewein ◽  
Eva Schildmann
Keyword(s):  
Palliative Care ◽  
Nursing Homes ◽  
End Of Life ◽  
Side Effect ◽  
Healthcare Professionals ◽  
Qualitative Interviews ◽  
Qualitative Interview Study ◽  
The Family ◽  
Framework Approach ◽  
Sedative Drugs

Abstract Background Previous data indicate major differences between countries and settings regarding the intention when administering sedative drugs at the end of life and the perception, which drugs are sedating. Therefore, we aimed to explore the concept of ‘sedative drugs’ and the intentions of German healthcare professionals in general palliative care when administering sedative drugs at the end of life. Methods Semi-structured qualitative interviews with physicians and nurses (n = 49). Recruitment took place via contact persons in five hospital departments (haematology/oncology (n = 2), neurology, geriatrics, gynaecology) and five nursing homes. We thematically analysed the transcripts by the Framework approach, using MAXQDA version 2018.2. Results Most interviewees referred to benzodiazepines, opioids, and antipsychotics. Some subsumed all into sedative drugs, others differentiated between sedative drugs, anxiolytics, and analgesics. In explaining their intention, interviewees particularly emphasized what they want to avoid when administering sedative drugs. We identified three main themes regarding (excluded) intentions: (1) use of sedative drugs to relieve the patient’s suffering with reduction of consciousness as side effect, (2) use of sedative drugs to relieve the situation for the team and/or the family, (3) distinction between intention and expectation regarding hastening death. Interviewees often equated the term ‘sedation’ with inducing a state of unconsciousness, which should be avoided. Conclusion German healthcare professionals in general palliative care seem to negatively connote the term ‘sedation’. Moreover, they see themselves in a more passive role by accepting a side effect rather than performing an intentional act. Critical reflection of indications and intentions in accordance with respective guidelines is needed.

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

2020 ◽  
Author(s):  
Eleanor Wilson ◽  
Glenys Caswell ◽  
Asam Latif ◽  
Claire Anderson ◽  
Christina Faull ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Memory Loss ◽  
Patient Choice ◽  
Dose Administration ◽  
Community Healthcare ◽  
Controlled Drugs ◽  
Qualitative Interview Study ◽  
At Home

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.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.

scholarly journals 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.

2019 ◽  
Author(s):  
Eleanor Wilson ◽  
Glenys Caswell ◽  
Asam Latif ◽  
Claire Anderson ◽  
Christina Faull ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Patient Choice ◽  
Medicines Management ◽  
Dose Administration ◽  
Controlled Drugs ◽  
Qualitative Interview Study ◽  
At Home

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. 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.

scholarly journals End-of-life and palliative care of patients on maintenance hemodialysis treatment: a focus group study

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Lena Axelsson ◽  
Eva Benzein ◽  
Jenny Lindberg ◽  
Carina Persson
Keyword(s):  
Palliative Care ◽  
Focus Group ◽  
End Of Life ◽  
Health Care Professionals ◽  
Qualitative Content Analysis ◽  
Family Members ◽  
High Rate ◽  
Maintenance Hemodialysis ◽  
Hemodialysis Treatment ◽  
Nurses And Physicians

Abstract Background Despite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals’ views on provision of care. The aim of this study was therefore to describe nurses’ and physicians’ perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis. Methods Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data. Results Participants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients’ quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance. Conclusions Nurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.

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

2020 ◽  
Author(s):  
Eleanor Wilson ◽  
Glenys Caswell ◽  
Asam Latif ◽  
Claire Anderson ◽  
Christina Faull ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Memory Loss ◽  
Patient Choice ◽  
Dose Administration ◽  
Community Healthcare ◽  
Controlled Drugs ◽  
Qualitative Interview Study ◽  
At Home

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 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.

scholarly journals The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
M. Torensma ◽  
B. D. Onwuteaka-Philipsen ◽  
X. de Voogd ◽  
D. L. Willems ◽  
J. L. Suurmond
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Underserved Populations ◽  
Ethnic Disparities ◽  
Migration Background ◽  
Structured Interviews ◽  
Migrant Populations ◽  
Funding Agencies ◽  
Qualitative Interview Study ◽  
Palliative Patient

Abstract Background The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers’ efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. Methods We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. Results Researchers’ efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers’ efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. Conclusion Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.

Hospital end-of-life care: families’ free-text notes

2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Free Text ◽  
Life Care ◽  
Quality Aspects ◽  
Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

Rehabilitation and palliative care

2015 ◽  
pp. 777-787
Author(s):  
Donna J. Wilson ◽  
Kathleen Michael
Keyword(s):  
Physical Activity ◽  
Palliative Care ◽  
End Of Life ◽  
Nursing Care ◽  
Human Dignity ◽  
Disease Process ◽  
Life Care ◽  
Level Of Functioning ◽  
Self Confidence ◽  
Tailored Program

This chapter applies the concept of physical activity to palliative care across settings. A physical activity program for each patient should be presented at the time of diagnosis and extend to end-of-life care. Even when it is not possible to cure or reverse a disease process, or to restore a previous level of functioning and independence, a rehabilitative approach to nursing care adds quality to the experience of living until life’s completion. The language of rehabilitation nursing is a language shared with those who practice palliative care. Feelings of self-confidence, independence, hope, human dignity, and autonomy are all influenced by an individually tailored program of rehabilitation.

scholarly journals Factors of importance for reducing fatigue in persons with rheumatoid arthritis: a qualitative interview study

BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e028719 ◽  
Author(s):  
Caroline Feldthusen ◽  
Kaisa Mannerkorpi
Keyword(s):  
Rheumatoid Arthritis ◽  
Physical Activity ◽  
Qualitative Content Analysis ◽  
Controlled Trial ◽  
Hospital Setting ◽  
Qualitative Interview ◽  
Interview Study ◽  
Pharmacological Intervention ◽  
Physically Active ◽  
Qualitative Interview Study

ObjectivePhysical activity plays an important role in the treatment of persons with rheumatoid arthritis (RA) and is the non-pharmacological intervention with the strongest evidence to reduce fatigue. However, physical activity can be challenging for persons who are fatigued. The aim of this study was to investigate factors of importance for reducing fatigue in persons with RA.DesignThis is a qualitative interview study based on semistructured, indepth individual interviews. Interviews were analysed using qualitative content analysis.ParticipantsParticipants were 12 people with RA recruited from a previous randomised controlled trial of a person-centred treatment model focusing on health-enhancing physical activity and daily balance to lessen fatigue in persons with RA.SettingInterviews were conducted in a hospital setting.ResultsThe analysis resulted in one theme:an intellectual and embodied understanding that sustainable physical activity is important to handle fatigue. This included five categories describing barriers and facilitating factors for sustainable physical activity:mentally overcoming the fatigue in order to be active,making exercise easy,reaching for balance,receiving support to be physically activeanddealing with RA disease to be physically active.ConclusionThe participants in this study expressed that physical activity was important in handling fatigue, but also that this insight could only come from personal experience. The use of a person-centred ethic in physiotherapy coaching for patients with fatigue appears to promote sustainable physical activity behaviours by facilitating patients’ resources to overcome barriers to physical activity.

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