scholarly journals P069 Health professionals’ perceptions of sleep in palliative care: A qualitative study

2021 ◽  
Vol 2 (Supplement_1) ◽  
pp. A43-A43
Author(s):  
A Lalor ◽  
R Laurie ◽  
D Parikh
Keyword(s):  
Palliative Care ◽  
Health Professionals ◽  
Structured Interviews ◽  
Sleep Health ◽  
Health And Wellbeing ◽  
Qualitative Research Design ◽  
Sleep Management ◽  
Impaired Sleep ◽  
Practice Development ◽  
Sleep Difficulties

Abstract Introduction Sleep is vital for all individuals however sleep difficulties are highly prevalent for those receiving palliative care. Impaired sleep impacts their everyday participation and overall health and wellbeing. Although sleep is recognised as an important factor for care, limited evidence exists regarding health professionals’ perceptions of sleep for patients receiving palliative. Methods A qualitative research design was used to investigate the perceptions and roles of health professionals in identifying and addressing sleep difficulties in patients receiving palliative care. In-depth semi-structured interviews were conducted with ten health professionals across six disciplines with minimum six months experience working in palliative care. Interviews were audio recorded, transcribed verbatim and thematically analysed. Pseudonyms were used to de-identify participants. Results Five themes were identified: (1) patient’s sleep is highly valued; (2) sleep in palliative care is complex; (3) perspectives and approaches to sleep management vary; (4) challenges in addressing sleep; and (5) health professionals desire for sleep knowledge. Discussion Findings highlight health professionals’ perceptions of sleep difficulties and consequential implications, and the importance of sleep for both patients and caregivers. Participants perceive priorities of care and limited resources and training in sleep management hindered their clinical practice in addressing sleep. Health professionals working in palliative care could benefit from reorienting practice, development of and access to up-to-date resources regarding sleep, and support to provide sleep education for patients and caregivers.

scholarly journals Cultural health literacy: the experiences of Māori in palliative care

2018 ◽  
Vol 25 (4) ◽  
pp. 15-23 ◽  
Author(s):  
Jacquie Kidd ◽  
Stella Black ◽  
Rawiri Blundell ◽  
Tamati Peni
Keyword(s):  
Palliative Care ◽  
New Zealand ◽  
Health Literacy ◽  
Health Information ◽  
Health Professionals ◽  
Health Resources ◽  
Structured Interviews ◽  
Aotearoa New Zealand ◽  
Palliative Care Setting ◽  
Maori Health

Abstract: Health literacy is a concept that is frequently applied to the patient’s ability to find and comprehend health information. However, recent literature has included the skill of the health professional and the accessibility of health resources as important factors in the level of health literacy achieved by individuals and populations. In 2014 a qualitative study undertaken in Aotearoa New Zealand, investigated the context of health literacy for Māori in a palliative care setting (Māori are the indigenous people of Aotearoa New Zealand). The study included the experiences of patients, whānau (families), and health professionals. Method: Individual semi-structured interviews were held with 21 patients, whānau and six key informants: a medical specialist, a service leader involved in developing culturally specific responses to patients, two Māori service managers, and two Māori health team leaders. Focus groups were held with a total of 54 health professionals providing palliative care services. Data analysis: A thematic analysis was undertaken using a general inductive approach. The trustworthiness and reliability of the analysis was supported by sharing analysis of the transcripts among the research team. Member checking or respondent validation was used in seeking confirmation of the interim findings at five hui (meetings) with the research communities involved. Findings: This study found that the shock and grief that attends a life-limiting illness made hearing and processing health information very difficult for patients and whānau. Further, ‘hard conversations’ about moving from active treatment to palliative care were often avoided by health professionals, leaving patients and whānau distressed and confused about their choices and prognosis. Finally, poor cultural health literacy on the part of organisations has likely impacted on late access to or avoidance of palliative care for Māori.

Experiences of time: A qualitative inquiry into experiences of time as described by palliative care inpatients

2013 ◽  
Vol 13 (1) ◽  
pp. 67-73 ◽  
Author(s):  
Matra Robertson
Keyword(s):  
Palliative Care ◽  
Health Professionals ◽  
Lived Experiences ◽  
Qualitative Inquiry ◽  
Phenomenological Method ◽  
Structured Interviews ◽  
Future Time ◽  
Phenomenological Inquiry ◽  
Care Health ◽  
Qualitative Phenomenological

AbstractObjectives:In palliative care, health professionals provide support and care for patients for the duration of the unknown time toward death. While the experiences of patients diagnosed with a life limiting illness in palliative care have received some scholarly attention, little research has explored these experiences as described by palliative inpatients themselves. The purpose of this article is to explore how patients describe their lived experiences of time while in a palliative inpatient facility.Methods:This study used a qualitative phenomenological method and nine inpatients were recruited. They were interviewed utilizing in-depth semi-structured interviews, which were audio taped and transcribed. These interview transcripts of their descriptions were the data sources for this inquiry. Their description is part of a broader phenomenological inquiry on the experience of living with a life limiting illness described by palliative inpatients. Data were analyzed to identify essential themes within and across cases.Results:Three essential themes were revealed: “brief time”; “waiting time,” and “transcendental horizon: future time.” These themes were not mutually exclusive and participant's experiences of time approaching death were described as a time of living toward death.Significance of results:The findings suggest that patients diagnosed with a life limiting illness have multi-dimensional experiences of time. Understanding the experiences of temporality for patients close to the gravity of death, from the patients' own words, can provide direction for patient informed interventions in clinical practice.

scholarly journals Development of a Managed Clinical Network for Children’s Palliative Care – A Qualitative Evaluation

2021 ◽  
Author(s):  
Andrew Papworth ◽  
Lorna Fraser ◽  
Jo Taylor
Keyword(s):  
Palliative Care ◽  
Health Professionals ◽  
Qualitative Evaluation ◽  
Governance Structure ◽  
Evidence Base ◽  
Care Staff ◽  
Successful Implementation ◽  
Structured Interviews ◽  
Clinical Network ◽  
Barriers To Access

Abstract Background Consistent evidence suggests that children’s palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. This study explored the perspectives of health professionals involved in the development of a children’s palliative care MCN, with an aim to identify barriers and enablers of successful implementation.Methods Thematic analysis of semi-structured interviews and focus groups with 45 healthcare staff with a role in developing the MCN or in the delivery of children’s palliative care (September 2019-March 2020). Results The study explored health professionals’ perceptions of the MCN features that had helped to formalise governance processes, establish training and networking opportunities, standardise practice, and improve collaboration between organisations. These include the funded MCN co-ordinator, committed individuals who lead the MCN, and a governance structure that fosters collaboration. However, the MCN’s development was impeded by cross-cutting barriers including limited funding for the MCN and children’s palliative care more generally, no shared technology, lack of standards and evidence-base for children’s palliative care, and shortage of palliative care staff. These barriers impacted on the MCN’s ability to improve and evaluate palliative care provision and affected member engagement. Competing organisational priorities and differences between NHS and non-NHS members also impeded progress. Training provision was well received, although barriers to access were identified. Conclusions Key features of children’s palliative care can act as barriers to developing a managed clinical network. Managing expectations and raising awareness, providing accessible and relevant training, and sharing early achievements through ongoing evaluation can help to sustain member engagement, which is crucial to a network’s success.

scholarly journals The use of playing by the nursing staff on palliative care for children with cancer

2014 ◽  
Vol 35 (3) ◽  
pp. 111-116 ◽  
Author(s):  
Vanessa Albuquerque Soares ◽  
Liliane Faria da Silva ◽  
Emília Gallindo Cursino ◽  
Fernanda Garcia Bezerra Goes
Keyword(s):  
Palliative Care ◽  
Nursing Staff ◽  
Thematic Analysis ◽  
Health Professionals ◽  
Public Hospital ◽  
Structured Interviews ◽  
Children With Cancer ◽  
Descriptive Research ◽  
Qualitative Descriptive ◽  
Facilitators And Barriers

This study aimed to describe ways of using play by the nursing staff on palliative care of children with cancer and analyze the facilitators and barriers of the use of playing on this type of care. Qualitative, descriptive research developed on November 2012 with 11 health professionals, in a public hospital of the state of Rio de Janeiro. Semi-structured interviews and thematic analysis of the information were conducted. The use of playing before procedures was highlighted as a facilitator on palliative care. The child's physical condition, one's restriction, resistance of some professionals and the lack of time for developing this activity, made the use of play harder. We concluded that playing enables the child with cancer, in palliative care, a humanized assistance, being fundamental to integrate it on the care for these children.

scholarly journals The perceptions of parents and caregivers on the causes of disabilities in children with cerebral palsy: A qualitative investigation

2001 ◽  
Vol 57 (2) ◽  
pp. 28-31 ◽  
Author(s):  
M. M. Mweshi ◽  
R. Mpofu
Keyword(s):  
Cerebral Palsy ◽  
Health Professionals ◽  
Community Resources ◽  
Qualitative Investigation ◽  
Structured Interviews ◽  
Qualitative Research Design ◽  
Adequate Information ◽  
Children With Cerebral Palsy ◽  
Range Of Variation ◽  
Parents And Caregivers

The purpose of this study was to investigate the perceptions of parents and caregivers on the causes of disabilities in children with cerebral palsy in selected areas of the Cape Metropolitan. A qualitative research design was chosen for the investigation. Data collection was by semi-structured interviews. The results showed that the range of variation in the beliefs of the parents and caregivers concerning the cause of the child’s disability and the stigma attached was quite considerable. However, the majority of the informants hardly knew the causes of disabilities while only a few informants seemed to have known. It is recommended that health professionals who work with families directly could play a major role in preventing unnecessary stressful situations by providing adequate information about the child’s condition in terms of aetiology and the likely prognosis. Helping and working with such families require a multidisciplinary effort, effective communication among families and professionals, and knowledge of community resources.

scholarly journals Development of a managed clinical network for children’s palliative care – a qualitative evaluation

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Andrew Papworth ◽  
Lorna Fraser ◽  
Jo Taylor
Keyword(s):  
Palliative Care ◽  
Health Professionals ◽  
Qualitative Evaluation ◽  
Governance Structure ◽  
Evidence Base ◽  
Care Staff ◽  
Successful Implementation ◽  
Structured Interviews ◽  
Clinical Network ◽  
Barriers To Access

Abstract Background Consistent evidence suggests that children’s palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. This study explored the perspectives of health professionals involved in the development of a children’s palliative care MCN, with an aim to identify barriers and enablers of successful implementation. Methods Thematic analysis of semi-structured interviews and focus groups with 45 healthcare staff with a role in developing the MCN or in the delivery of children’s palliative care (September 2019–March 2020). Results The study explored health professionals’ perceptions of the MCN features that had helped to formalise governance processes, establish training and networking opportunities, standardise practice, and improve collaboration between organisations. These include the funded MCN co-ordinator, committed individuals who lead the MCN, and a governance structure that fosters collaboration. However, the MCN’s development was impeded by cross-cutting barriers including limited funding for the MCN and children’s palliative care more generally, no shared technology, lack of standards and evidence base for children’s palliative care, and shortage of palliative care staff. These barriers impacted on the MCN’s ability to improve and evaluate palliative care provision and affected member engagement. Competing organisational priorities and differences between NHS and non-NHS members also impeded progress. Training provision was well received, although barriers to access were identified. Conclusions Key features of children’s palliative care can act as barriers to developing a managed clinical network. Managing expectations and raising awareness, providing accessible and relevant training, and sharing early achievements through ongoing evaluation can help to sustain member engagement, which is crucial to a network’s success.

scholarly journals Development of a Managed Clinical Network for Children’s Palliative Care – A Qualitative Evaluation

2020 ◽  
Author(s):  
Andrew Papworth ◽  
Lorna Fraser ◽  
Jo Taylor
Keyword(s):  
Palliative Care ◽  
Health Professionals ◽  
Qualitative Evaluation ◽  
Governance Structure ◽  
Evidence Base ◽  
Care Staff ◽  
Successful Implementation ◽  
Structured Interviews ◽  
Clinical Network ◽  
Barriers To Access

Abstract BackgroundConsistent evidence suggests that children’s palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. This study explored the perspectives of health professionals involved in the development of a children’s palliative care MCN, with an aim to identify barriers and enablers of successful implementation.MethodsThematic analysis of semi-structured interviews and focus groups with 45 healthcare staff with a role in developing the MCN or in the delivery of children’s palliative care (September 2019-March 2020). ResultsThe study explored health professionals’ perceptions of the MCN features that helped to formalise governance processes, establish training and networking opportunities, standardise practice, and improve collaboration between organisations. These include the funded MCN co-ordinator, committed individuals who lead the MCN, and a governance structure that fosters collaboration. However, the MCN’s development was impeded by cross-cutting barriers including limited funding for the MCN and children’s palliative care more generally, no shared technology, lack of standards and evidence-base for children’s palliative care, and shortage of palliative care staff. These barriers impacted on the MCN’s ability to improve and evaluate palliative care provision and affected member engagement. Competing organisational priorities and differences between NHS and non-NHS members also impeded progress. Training provision was well received, although barriers to access were identified. ConclusionsKey features of children’s palliative care can act as barriers to developing a managed clinical network. Managing expectations and raising awareness, providing accessible and relevant training, and sharing early achievements through ongoing evaluation can help to sustain member engagement, which is crucial to a network’s success.

Māori Research(er) in Three Poems

2018 ◽  
Vol 2 (1) ◽  
pp. 35
Author(s):  
Jacquie Kidd
Keyword(s):  
Palliative Care ◽  
Health Literacy ◽  
Cultural Identity ◽  
Focus Groups ◽  
Health Professionals ◽  
Bell Hooks ◽  
Face To Face ◽  
The Third ◽  
Ruth Behar ◽  
Seeking Help

These three poems re-present the findings from a research project that took place in 2013 (Kidd et al. 2018, Kidd et al. 2014). The research explored what health literacy meant for Māori patients and whānau when they accessed palliative care. Through face-to-face interviews and focus groups we engaged with 81 people including patients, whānau, bereaved loved ones, support workers and health professionals. The poems are composite, written to bring some of our themes to life. The first poem is titled Aue. This is a Māori lament that aligns to English words such as ‘oh no’, or ‘arrgh’, or ‘awww’. Each stanza of the poem re-presents some of the stories we heard throughout the research. The second poem is called Tikanga. This is a Māori concept that encompasses customs, traditions and protocols. There are tikanga rituals and processes that guide all aspects of life, death, and relationships. This poem was inspired by an elderly man who explained that he would avoid seeking help from a hospice because ‘they leave tikanga at the door at those places’. His choice was to bear his pain bravely, with pride, within his cultural identity. The third poem is called ‘People Like Me’. This is an autoethnographical reflection of what I experienced as a researcher which draws on the work of scholars such as bell hooks (1984), Laurel Richardson (1997) and Ruth Behar (1996). These and many other authors encourage researchers to use frustration and anger to inform our writing; to use our tears to fuel our need to publish our research.

Sleep, health, and society

2018 ◽  
Author(s):  
Francesco P. Cappuccio ◽  
Michelle A. Miller ◽  
Steven W. Lockley ◽  
Shantha M. W. Rajaratnam
Keyword(s):  
Sleep Deprivation ◽  
Sleep Duration ◽  
Sleep Disturbances ◽  
Modern Society ◽  
Social Conditions ◽  
Sleep Health ◽  
Health And Wellbeing

Sleep disturbances are common in modern society. Since the beginning of the century, populations have shown a decline in sleep duration, owing to changes in environmental and social conditions. Industry was the first to appreciate the detrimental effects of sleep disturbances on health and wellbeing. It has taken, however, many decades to understand the implications for individuals and populations of sustained sleep deprivation.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

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