Rehabilitation in palliative care: a qualitative study of team professionals

2019 ◽  
pp. bmjspcare-2019-002008
Author(s):  
Zoe Harding ◽  
Charlie Hall ◽  
Anna Lloyd
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Palliative Care Team ◽  
Self Management ◽  
Structured Interviews ◽  
Effective Implementation ◽  
Conceptual Clarity ◽  
Preserve Function ◽  
Patient Enablement ◽  
Organisational Level

ObjectivesThere has been a recent drive to embed rehabilitation within palliative care. The concept of rehabilitative palliative care has been advocated to help patients preserve function and independence, through greater patient enablement and self-management. Such an approach requires engagement from all members of the palliative care team. There is a lack of understanding of such viewpoints. The objective of this research was to explore hospice-based palliative care professionals’ understanding and perceptions of rehabilitation.MethodsQualitative semi-structured interviews were conducted. Eighteen hospice-based healthcare professionals were recruited from a hospice in central Scotland. Interviews were audio-recorded, transcribed and thematically analysed.ResultsOverall, participants clearly articulated the underlying values and benefits of rehabilitative palliative care. Emphasis was placed on ensuring that rehabilitation was appropriately tailored to each individual patient. There was more ambiguity regarding the pragmatic implementation of rehabilitative palliative care, with a number of barriers and facilitators identified.ConclusionsThe findings suggest that hospice-based palliative care professionals would be receptive to further implementation of rehabilitative palliative care. A lack of conceptual clarity among palliative care professionals may be a barrier to the effective implementation of rehabilitative palliative care. At an organisational level, this would require clarification of the approach, and additional training involving all members of the multidisciplinary team.

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.

scholarly journals “How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

2020 ◽  
Vol 10 (4) ◽  
pp. 1631-1642
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Maxime Steppe ◽  
Jenny T. van der Steen ◽  
Marjan J. Meinders ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Healthcare Professionals ◽  
Structured Interviews ◽  
Practice Nurses ◽  
Bereaved Family

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

A qualitative study using semi-structured interviews of palliative care patients’ views on corneal donation and the timing of its discussion

2018 ◽  
Vol 32 (8) ◽  
pp. 1428-1437
Author(s):  
Lucy Walker ◽  
Karen Neoh ◽  
Hazel Gilkes ◽  
Clare Rayment
Keyword(s):  
Palliative Care ◽  
Sampling Method ◽  
Healthcare Professionals ◽  
Corneal Transplantation ◽  
Structured Interviews ◽  
Illness Trajectory ◽  
Face To Face ◽  
Donor Shortage ◽  
Corneal Donation ◽  
Sight Restoration

Background: Corneal transplantation can lead to sight restoration, but globally there is a donor shortage. Many palliative care patients can donate their corneas but think they are ineligible due to comorbidities. Healthcare professionals are reluctant to broach the topic, but studies have shown that relatives would be upset if they were not offered this chance. There is no existing research involving patients. Aim: To understand the views and feelings of patients in palliative care settings towards corneal donation and explore their opinions regarding the timing of its discussion. Design: This is an exploratory study based at one UK palliative care unit. A census sampling method was used. Nine participants took part in semi-structured interviews and thematic analysis was undertaken. Results: Themes found included altruistic motivation and the value of sight. Family views were important, but the influence on final decisions varied. The timing of discussion relative to the illness trajectory was important; patients want to be able to engage fully in conversations and had concerns about not being able to think clearly when closer to death. Participants also associated discussion of donation as an indication of a poor prognosis. Patients prefer face-to-face discussions with someone whom they had a close rapport. Many had misconceptions about eligibility. Conclusion: This is the first study to engage directly with palliative care patients and to establish their views on the timing of corneal donation discussions. Patients are willing to discuss donation, and further exploration of patient views in this area should be undertaken.

scholarly journals Perceived Value of eHealth among People Living with Multimorbidity: A Qualitative Study

2017 ◽  
Vol 7 (1) ◽  
pp. 96-111 ◽  
Author(s):  
Sidsel M. Runz-Jørgensen ◽  
Michaela L. Schiøtz ◽  
Ulla Christensen
Keyword(s):  
Complex Disease ◽  
Healthcare Professionals ◽  
Burden Of Illness ◽  
Perceived Value ◽  
Healthcare Sector ◽  
Self Management ◽  
Structured Interviews ◽  
Patient Centeredness ◽  
Daily Lives ◽  
Treatment Regimens

Background The prevalence of multimorbidity is increasing, creating challenges for patients, healthcare professionals, and healthcare systems. Given that chronic disease management increasingly involves eHealth, it is useful to assess its perceived value among people with multimorbidity. Objective To explore challenges related to multimorbidity and patients’ perspectives on eHealth. Design Ten semi-structured interviews with adults, living with multimorbidity in Copenhagen, Denmark. Interviews focused on patient-experienced challenges, from challenges related to self-management to challenges experienced in the healthcare sector, as well as perceptions of eHealth. During interviews, participants were presented with pictures of different eHealth technologies. Data analysis followed the systematic text condensation approach. Results Participants experienced challenges in their daily lives, e.g. when practicing self-management activities, when navigating the healthcare sector, and when interacting with healthcare professionals. Patient-perceived value of eHealth varied, depending on their burden of illness and treatment: those with a greater burden had more positive perceptions of eHealth, and expressed more intention to use it. Participants with less complex disease patterns and less burdensome treatment regimens were more likely to perceive eHealth as something worthless and undesirable. Participants stressed that eHealth should only be introduced as an optional supplement. Conclusions eHealth can potentially address some patient-experienced challenges related to multimorbidity by promoting self-management, patient-centeredness, and access. However, patients’ needs and preferences vary and eHealth cannot substitute the personal interaction between patient and healthcare professionals. Our findings point to the importance of patient assessment and stratification to ensure appropriate use of eHealth.

scholarly journals The study of opinions of healthcare professionals on the role and functions of pharmaceutical workers in the modern system of palliative care for children

2021 ◽  
Vol 7 (3) ◽  
pp. 12-20
Author(s):  
І. V. Kubareva ◽  
M. S. Beketova ◽  
O. D. Blagun
Keyword(s):  
Palliative Care ◽  
Medical Devices ◽  
Analytical Methods ◽  
Healthcare Professionals ◽  
Palliative Care Team ◽  
Expert Group ◽  
Care Providers ◽  
Medical Specialists ◽  
Modern System ◽  
Level Of Agreement

Aim. To study opinions of healthcare professionals on the role and functions of pharmaceutical workers in the modern system of palliative care for children and identify the most important and promising areas of partnership with other providers of palliative care.Materials and methods. The sociological, statistical,  quantitative expert-analytical methods were used in the study. The study was conducted during 2018-2020.Results. According to the results of the analysis of the opinions of experts –employees of specialized healthcare institutions, the average level of agreement on the role and functions of pharmaceutical specialists in providing palliative services has been determined. In addition, the directions for cooperation of pharmacy specialists with other healthcare professionals in the context of palliative services have been identified. As promising areas of partnership we have identified: providing the availability of medicines, special food, medical devices; managing potential and actual problems of pharmacotherapy; informing medical specialists, patients / caregivers about the rational use of medicines, etc.Conclusions. The palliative care providers who presented the expert group have noted the expediency and necessity of participation of pharmaceutical specialists in the work of the multidisciplinary palliative care team and focused on the importance of organizing unimpeded provision of pharmaceutical care to palliative care patients.

scholarly journals Do Canadian and Japanese palliative care physicians perceive the concept of resilience differently?

2018 ◽  
Vol 5 (1) ◽  
Author(s):  
Shizuma Tsuchiya ◽  
Yusuke Takamiya ◽  
Alenoush Saroyan ◽  
Linda Snell
Keyword(s):  
Palliative Care ◽  
North American ◽  
Healthcare Professionals ◽  
Care Physician ◽  
Theory Approach ◽  
North American Society ◽  
Structured Interviews ◽  
American Society ◽  
Grounded Theory Approach ◽  
Palliative Care Physician

Teaching about resilience is one of the biggest challenges in medical education. One of the problems of currently accepted definitions is that they attribute individualistic notions mainly originating in North American society, such as “endure ongoing hardship,” “thrive on challenges,” “be healthy,” and “be stronger.” In response to this situation, Tsuchiya et al (2017) proposed a description of a broader model of a resilient physician in healthcare that incorporates concepts of self-definition as described in both North American and the East Asian societies; that is, “a person’s capacity to be aware of the aspects of the self differently identified in each context, and to consciously value oneself and others in the context”. However, the concept is still theoretical, and more empirical understanding is needed.This presentation will examine the findings from our exploratory study on physician resilience using semi-structured interviews with 20 palliative care physicians (10 each in Canada and Japan) to answer the following questions:(1) Are there any differences in the way Canadian and Japanese palliative care physician perceive resilience? (2) What factors might affect the similarities or differences of their perceptions of resilience? (3) Are these findings consistent with Tsuchiya’s description? Following qualitative analysis using a grounded theory approach, a schematic representation of resilience in physicians will be offered, to inform a coherent educational program for resilient healthcare professionals. 

scholarly journals Evaluating the use of video communication technology in a hospital specialist palliative care team during the COVID-19 pandemic

2021 ◽  
Vol 3 ◽  
pp. 5
Author(s):  
Benjamin Crosby ◽  
Sarika Hanchanale ◽  
Sarah Stanley ◽  
Amara Callistus Nwosu
Keyword(s):  
Palliative Care ◽  
Communication Technology ◽  
Healthcare Professionals ◽  
Palliative Care Team ◽  
Video Communication ◽  
Care Team ◽  
Published Data ◽  
Specialist Palliative Care ◽  
Hospital Specialist ◽  
Palliative Care Teams

Background: Healthcare professionals’ use of video communication technology has increased during the novel coronavirus disease (COVID-19) pandemic, due to infection control restrictions. Currently there is little published data about the experiences of specialist palliative care teams who are using technology to communicate during the COVID-19 pandemic. The aim of this evaluation was to describe the experience of a UK based hospital specialist palliative care team, who were using video communication technology to support care during the COVID-19 pandemic. Methods: An online survey was distributed to the specialist palliative care team at a University teaching hospital in the North West of the UK. We asked participants to provide their views on the scope of use, barriers and future opportunities to use technology for communication in hospital palliative care. Results: The survey was completed by 14 healthcare professionals. Participants indicated that the most common reasons for using the technology was to receive team updates (n= 14, 100%), participate in multidisciplinary team meetings (n=14, 100%), for education (n=12, 86%) and to facilitate cross-site working (n=9, 64%). We identified barriers to using the technology, which were summarised as: (1) user-based difficulties; (2) inadequate technological infrastructure; (3) data security, privacy and ethical concerns; and (4) concerns regarding staff wellbeing. Participants stated that technology can potentially improve care by improving communication with hospital and community teams and increasing access to education. We have used these findings to develop recommendations to help palliative care teams to implement this technology better in clinical practice. Conclusion: Video communication technology has the potential to improve specialist palliative care delivery; however, it is essential that healthcare organisations address the existing barriers to using this technology, to ensure that these systems work meaningfully to improve palliative care for those who are most vulnerable beyond the COVID-19 pandemic.

scholarly journals The TOPSY pessary self-management intervention for pelvic organ prolapse: a study protocol for the process evaluation

Trials ◽  
2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Carol Bugge ◽  
Rohna Kearney ◽  
Melanie Dembinsky ◽  
Aethele Khunda ◽  
Margaret Graham ◽  
...  
Keyword(s):  
Pelvic Organ Prolapse ◽  
Process Evaluation ◽  
Healthcare Professionals ◽  
Controlled Trial ◽  
Pelvic Organ ◽  
Self Management ◽  
Trial Participation ◽  
Structured Interviews ◽  
Process Data ◽  
Management Intervention

Abstract Background Process evaluations have become a valued component, alongside clinical trials, of the wider evaluation of complex health interventions. They support understanding of implementation, and fidelity, related to the intervention and provide valuable insights into what is effective in a practical setting by examining the context in which interventions are implemented. The TOPSY study consists of a large multi-centre randomised controlled trial comparing the effectiveness of pessary self-management with clinic-based care in improving women’s condition-specific quality of life, and a nested process evaluation. The process evaluation aims to examine and maximise recruitment to the trial, describe intervention fidelity and explore participants’ and healthcare professionals’ experiences. Methods The trial will recruit 330 women from approximately 17 UK centres. The process evaluation uses a mixed-methods approach. Semi-structured interviews will be conducted with randomised women (18 per randomised group/n = 36), women who declined trial participation but agreed to interview (non-randomised women) (n = 20) and healthcare professionals recruiting to the trial (n ~ 17) and delivering self-management and clinic-based care (n ~ 17). The six internal pilot centres will be asked to record two to three recruitment discussions each (total n = 12–18). All participating centres will be asked to record one or two self-management teaching appointments (n = 30) and self-management 2-week follow-up telephone calls (n = 30). Process data (quantitative and qualitative) will be gathered in participant completed trial questionnaires. Interviews will be analysed thematically and recordings using an analytic grid to identify fidelity to the intervention. Quantitative analysis will be predefined within the process evaluation analysis plan. Discussion The wide variety of pessary care delivered across the UK for women with pelvic organ prolapse presents specific localised contexts in which the TOPSY interventions will be implemented. Understanding this contextual variance is central to understanding how and in what circumstances pessary self-management can be implemented (should it be effective). The inclusion of non-randomised women provides an innovative way of collecting indispensable information about eligible women who decline trial participation, allowing broader contextualisation and considerations of generalisability of trial findings. Methodological insights from examination of recruitment processes and mechanisms have the potential to inform recruitment mechanisms and future recruitment strategies and study designs. Trial registration ISRCTN62510577. Registered on 6 October 2017.

scholarly journals ‘Take more laxatives was their answer to everything’: A qualitative exploration of the patient, carer and healthcare professional experience of constipation in specialist palliative care

2019 ◽  
Vol 34 (8) ◽  
pp. 1057-1066
Author(s):  
Felicity Hasson ◽  
Deborah Muldrew ◽  
Emma Carduff ◽  
Anne Finucane ◽  
Lisa Graham-Wisener ◽  
...  
Keyword(s):  
Palliative Care ◽  
Healthcare Professional ◽  
Focus Groups ◽  
Healthcare Professionals ◽  
Care Plan ◽  
Specialist Palliative Care ◽  
Structured Interviews ◽  
Lifestyle Modifications ◽  
Pharmacological Management ◽  
Professional Perspective

Background: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. Aim: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. Design: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. Setting/participants: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. Results: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. Conclusion: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this.

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