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

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.

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A Qualitative Study Using Semi-Structured Interviews: Comparing the Views of Palliative Care Unit Patients and Clinicians on Corneal Donation Discussions

10.21203/rs.3.rs-1172675/v1 ◽

2022 ◽

Author(s):

Chirag Patel ◽

Gregory B Crawford

Keyword(s):

Palliative Care ◽

Qualitative Study ◽

South Australia ◽

Corneal Opacity ◽

Structured Interview ◽

Palliative Care Unit ◽

Attitudes And Beliefs ◽

Structured Interviews ◽

Face To Face ◽

Corneal Donation

Abstract Background: Blindness from corneal opacity accounts for 12% of cases of blindness worldwide. There is a severe shortage of corneas for donation worldwide for transplantation and research purposes. One group of individuals who could potentially be donors are those who die within the inpatient palliative care unit. The aims of the study were to 1. determine the frequency of corneal donation discussion; 2. determine whether inpatient palliative care unit patients and clinicians were aware of the potential for corneal donation discussions and 3. explore the attitudes and beliefs of inpatient palliative care unit patients and clinicians about corneal donation. Methods: An exploratory qualitative study was designed where inpatient palliative care unit patients and clinicians were invited to a semi-structured interview. A total of 46 face to face interviews were undertaken involving inpatient palliative care unit patients (20) and clinicians (26) in three major inpatient palliative care units in South Australia. Results: Very few patient participants were asked about corneal donations during their time in palliative care. Most inpatient palliative care unit clinicians did not bring up the topic as they felt other areas of care took precedence. Inpatient palliative care unit patients thought if inpatient palliative care unit clinicians did not raise the topic, then it was not important. Conclusions: Findings suggest that patients are receptive to discussing corneal donations, but few discussions are occurring. There were some differences between patient and clinician views, such as preference about who raises the possibility of donation and when the discussion might occur.

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

BMC Palliative Care ◽

10.1186/s12904-020-00701-2 ◽

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.

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Barriers and facilitators to e-learning in palliative care

International Journal of Palliative Nursing ◽

10.12968/ijpn.2020.26.8.394 ◽

2020 ◽

Vol 26 (8) ◽

pp. 394-402

Author(s):

Joanne Callinan

Keyword(s):

Palliative Care ◽

Administrative Support ◽

Healthcare Professionals ◽

Computer Training ◽

Barriers And Facilitators ◽

Cross Sectional ◽

Face To Face ◽

Course Work ◽

E Learning ◽

Prior Experiences

Background: E-learning provides opportunities for flexible learning to those who cannot access palliative education in the traditional classroom setting, but it also presents learners with challenges. The study aims to identify the barriers and facilitators to accessing e-learning courses in palliative care. Methods: Cross-sectional surveys were developed, piloted and disseminated to healthcare professionals (HCPs) working in palliative care on the island of Ireland (Republic of Ireland and Northern Ireland). Results: Important factors that motivated HCPs to participate in e-learning are: dedicated time; quick technical and administrative support; computer training before completing an e-learning course; and regular contact with the tutor in online course work. Some 50% indicated face-to-face assistance and hands-on training sessions as the type of support that they would like to receive. Conclusions: Healthcare professionals' prior experiences and attitudes towards e-learning will guide educators developing programmes. This study indicates the prerequisite for organisational supports and practical considerations to facilitate the uptake of e-learning.

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“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

Journal of Parkinson s Disease ◽

10.3233/jpd-191884 ◽

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.

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Knowledge, Attitude and Awareness towards Corneal Donation in Aseer Region, Saudi Arabia

10.5742/mewfm.2021.94162 ◽

2021 ◽

Vol 20 (11) ◽

Author(s):

Abdulrahman Mohammed Al-Amri ◽

Faisal Misfer Alqahtani ◽

Hassan Abdullah Alqahtani ◽

Mansour Salem Alqahtani ◽

Mohammed Moshabbab Alqahtani ◽

...

Keyword(s):

Saudi Arabia ◽

Corneal Transplantation ◽

Knowledge Score ◽

Corneal Dystrophy ◽

Cross Sectional ◽

Factors Affecting ◽

Corneal Transplants ◽

Level Of Knowledge ◽

Corneal Donation ◽

Sight Restoration

Background: Corneal transplantation is the mainstay procedure performed for sight restoration in patients with corneal blindness, which can be caused by infection, corneal dystrophy, degenerative disorders such as keratoconus or traumatic causes. Most corneal transplants in Saudi Arabia are performed using imported corneas. Aims: To determine the level of knowledge and awareness and the factors affecting corneal donation in Aseer region, Saudi Arabia. Subjects and Methods: A descriptive cross-sectional approach was used targeting the population of Aseer region aged 18 years and above. The data were collected using electronic self-administered questionnaire. The tool covered the participants’ biodemographic data, knowledge related questions and willingness of corneal donation and factors affecting such attitudes. Results: Of the 641 participants, 66.1% were males, 47.6% were in the age group 20 – 30 years and 19.2% claimed to have enough knowledge about corneal donation. The mean knowledge score (SD) was 2.13 (1.757) out of 8. Regarding participants’ attitude, 26.7% were willing to donate their own cornea. The willingness was significantly associated with good level of knowledge (p = 0.008). Females were more inclined to donate their corneas than males (30.9% vs 24.5%, p = 0.025). Conclusion: The study revealed a low level of knowledge of corneal donation in Aseer region, Saudi Arabia. Approximately one quarter of the participants reported willingness of corneal donation. Lack of knowledge was the main barrier, as it was reported by almost two thirds. Key words: Cornea, Donation, Awareness, Penetrating Keratoplasty, Saudi Arabia

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Talking about smoking cessation with postnatal women: exploring midwives' experiences

British Journal of Midwifery ◽

10.12968/bjom.2019.27.12.760 ◽

2019 ◽

Vol 27 (12) ◽

pp. 760-766

Author(s):

Rhona Reardon ◽

Sarah Grogan

Keyword(s):

Smoking Cessation ◽

Thematic Analysis ◽

Healthcare Professionals ◽

Structured Interviews ◽

Face To Face ◽

Family Approach ◽

Stop Smoking ◽

Postnatal Women ◽

The Uk

This study explores midwives' experiences of talking to postnatal women about smoking cessation. Face-to-face, semi-structured interviews were held with seven midwives based in the UK. Thematic analysis identified themes which provided understanding as to factors determining discussion of smoking cessation. Six themes were identified, namely postnatal women factors, midwife factors, providing information, involving others, priorities, and whole family approach. Implications for midwives working with postnatal women are discussed, including the need to increase the involvement of other healthcare professionals in supporting postnatal women to stop smoking.

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Cancer Care in a Time of COVID: Lung Cancer Patient’s Experience of Telehealth and Connectedness

10.21203/rs.3.rs-489951/v1 ◽

2021 ◽

Author(s):

Anne Fraser ◽

Rob Mc Neill ◽

Jackie Robinson

Keyword(s):

Lung Cancer ◽

Cancer Care ◽

Healthcare Professionals ◽

Previous Experience ◽

Structured Interviews ◽

Face To Face ◽

Internal Capabilities ◽

Number Of Patients ◽

Patient’S Experience ◽

Seeking Help

Abstract Objective: To explore lung cancer patient’s experiences of telehealth during COVID-19 restrictions.Methods: 30 patients with lung cancer were recruited. Data was collected using a qualitative exploratory design with semi-structured interviews. Transcripts were thematically coded using NVivo software.Results: Five key themes were identified. Maintaining resilience: participants acknowledged they were self-reliant prior to their diagnosis, and that the sense of their own internal capabilities was a source of comfort for them; Importance of pre-established relationships with healthcare professionals: the sense of connection established prior to the telehealth consultation supported participants to engage with healthcare professionals. The need for connectedness was amplified by a sense of isolation. Seeking help: participants sought help from services that they perceived as being “expert”; Convenience: factors such as costs and saving time were highlighted; Preferences for consultation type: majority of participants identified physical and emotional comfort being in their own space. For a small number of patients, continuing a face to face assessment was important due to expectation based on previous experience. Conclusion: The use of telehealth was supported during the management of COIVD-19. Connectedness and convenience were key to the level of comfort and confidence for patients with lung cancer using telehealth during ‘lockdown’.

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

International Journal of Whole Person Care ◽

10.26443/ijwpc.v5i1.142 ◽

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.

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Considering Health Literacy in Cardiovascular Disease Management: A Qualitative Study on Healthcare Professionals’ and Patients' Perspectives

10.21203/rs.3.rs-1050514/v1 ◽

2021 ◽

Author(s):

Adèle PERRIN ◽

Eléonore Damiolini ◽

Anne-Marie Schott ◽

Jéremy Zermati ◽

Estelle Bravant ◽

...

Keyword(s):

Health Literacy ◽

Healthcare Professionals ◽

Implementation Strategies ◽

Structured Interviews ◽

Face To Face ◽

Implementing Change ◽

Fishbone Diagram ◽

Patient Health ◽

Health Action

Abstract Background: Implementing practices adapted to patient health literacy (HL) is a promising avenue for improving their outcomes in the context of cardiovascular diseases (CVD). The health communication skills of healthcare professionals (HCPs) and the quality of information provided are essential for low-HL patients. We aimed to explore HCPs knowledge about HL, patients and HCPs views on current practices regarding low-HL patients, and facilitators and barriers to adapting communication to patients’ HL level, in order to prepare the implementation of a complex intervention dedicated to improve CVD management for low-HL patients.Methods: We conducted face-to-face semi-structured interviews with HCPs practicing in cardiology units and patients hospitalized for CVD. Study design and analysis were based on the Theory of Planned Behavior for HCPs and the framework of Health Literacy and Health Action for patients. Deductive and inductive thematic analysis were used. Barriers and facilitators were structured into an Ishikawa fishbone diagram and implementation strategies were selected to address resulting themes from the Expert Recommendations for Implementing Change (ERIC).Results: Fifteen patients and 14 HCPs were interviewed. HCPs had partial knowledge of HL dimensions. Perceptions of HCPs and patients were not congruent regarding HCP-patient interactions and information provided by hospital and community HCPs. HCPs perceived they lacked validated tools and skills, and declared they adapted spontaneously their communication when interacting with low-HL patients. Patients expressed unmet needs regarding communication during hospital discharge and at return to home. Conclusion: To implement HL-tailored practices in this setting, our results suggest that several implementation strategies will be valuable at individual (engaging patients and their family), interactional (educating and training of HCPs about HL) and organizational levels (creating a multidisciplinary HCPs interest group dedicated to HL). Trial registration: The study was registered on Clinical Trials: NCT03949309.

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Rehabilitation in palliative care: a qualitative study of team professionals

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2019-002008 ◽

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.

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