BACKGROUND: Compassion is seen as a core professional value in nursing and as essential in the effort of relieving suffering and promoting well-being in palliative care patients. Despite the advances in modern healthcare systems, there is a growing clinical and scientific concern that the value of compassion in palliative care is being less emphasised.
OBJECTIVE: This study aimed to explore nurses' experiences of compassion when caring for palliative patients in home nursing care.
DESIGN AND PARTICIPANTS: A secondary qualitative analysis inspired by hermeneutic circling was performed on narrative interviews with 10 registered nurses recruited from municipal home nursing care facilities in Mid-Norway.
ETHICAL CONSIDERATIONS: The Norwegian Social Science Data Services granted permission for the study (No. 34299) and the re-use of the data.
FINDINGS: The compassionate experience was illuminated by one overarching theme: valuing caring interactions as positive, negative or neutral, which entailed three themes: (1) perceiving the patient's plea, (2) interpreting feelings and (3) reasoning about accountability and action, with subsequent subthemes.
DISCUSSION: In contrast to most studies on compassion, our results highlight that a lack of compassion entails experiences of both negative and neutral content.
CONCLUSION: The phenomenon of neutral caring interactions and lack of compassion demands further explorations from both a patient - and a nurse perspective.
BACKGROUND: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients' perspectives. However, little is known about how patients' experience such interventions.
AIM: To explore advanced cancer patients' experiences with a structured early palliative care intervention, its acceptability and impact on the patients' life including influencing factors.
DESIGN: Qualitative content analysis of in-depth, semi-structured interviews.
SETTING/PARTICIPANTS: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of "Symptoms, End-of-life decisions, Network, Support," a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study.
RESULTS: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel "confronting" but with the right timing it can be confirming and facilitate family conversations. Patients' personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning.
CONCLUSION: Early palliative care interventions like "Symptoms, End-of-life decisions, Network, Support" may provoke emotions and feel "confrontational" often because this is the first time when issues about one's end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.
The aim of this study was to explore patients' experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was adapted to them which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well-being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person-centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient-reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients' voice to be heard and thereby compose a basis for care.
BACKGROUND: The death of a child is regarded as one of the most devastating events for a family. Families are reliant on nurses to not only provide end-of-life care but also to support and care for grieving families in a way that is sensitive to their cultural and religious needs and preferences.
AIMS: The aim of this study was to explore the perceived impact and influence of cultural diversity on how neonatal and paediatric intensive care nurses care for Muslim families before and after the death of infants/children.
DESIGN: A qualitative descriptive approach was used in this study, conducted in Saudi Arabia.
METHODS: Semi-structured interviews were used to gather data from a convenience sample of registered nurses working in neonatal and paediatric intensive care, with experience in providing end-of-life care. Interviews were conducted between July and November, 2018. Interviews were audio-recorded and transcribed for analysis.
RESULTS: Thirteen registered nurses participated; all were born overseas, identified with various faiths and spoke English in the workplace. A respect for diversity and care of the family was prioritized yet impacted by communication challenges. Caring and respect was demonstrated by facilitating important cultural and religious practices important in the Muslim faith. Self-care was identified as important, transcending the culturally diverse nature of the nursing workforce.
CONCLUSIONS: Significant challenges exist for a culturally diverse nursing workforce in providing care to a Saudi Muslim population of infants/children and families, before and after a death. Their overriding commitment to respect for others, and an openness to cultural diversity and difference, aided in overcoming the inherent challenges in providing culturally sensitive end-of-life care that meets the needs of Muslim families. These findings provide valuable insights for intensive care clinicians in other countries to address challenges associated with cultural diversity.
BACKGROUND: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life.
AIM: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.
DESIGN: Semi-structured interviews with patients and family caregivers, which were analysed thematically using qualitative description.
SETTING/PARTICIPANTS: A total of 17 participants (8 patients and 9 caregivers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia.
RESULTS: The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services. Patients and caregivers dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, patients and caregivers expressed their choices as contextual, personal, relational, conditional and flexible preferences.
CONCLUSIONS: These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.
BACKGROUND: Hospitals are important sites of end-of-life care, particularly for older people. A need has been identified to understand best practice in hospital end-of-life care from the service-user perspective.
AIM: The aim of this study was to identify examples of good care received in the hospital setting during the last 3 months of life for people dying in advanced age from the perspective of bereaved family members.
DESIGN: A social constructionist framework underpinned a qualitative research design. Data were analysed thematically drawing on an appreciative enquiry framework.
SETTING/PARTICIPANTS: Interviews were conducted with 58 bereaved family carers nominated by 52 people aged >80 years participating in a longitudinal study of ageing. Data were analysed for the 21 of 34 cases where family members were 'extremely' or 'very' satisfied with a public hospital admission their older relative experienced in their last 3 months of life.
RESULTS: Participants' accounts of good care aligned with Dewar and Nolan's relation-centred compassionate care model: (1) a relationship based on empathy; (2) effective interactions between patients/families and staff; (3) contextualised knowledge of the patient/family; and (4) patients/families being active participants in care. We extended the model to the bicultural context of Aotearoa, New Zealand.
CONCLUSION: We identify concrete actions that clinicians working in acute hospitals can integrate into their practice to deliver end-of-life care with which families are highly satisfied. Further research is required to support the implementation of the relation-centred compassionate care model within hospitals, with suitable adaptations for local context, and explore the subsequent impact on patients, families and staff.
OBJECTIVE: Qualitatively evaluate the operation of a palliative care service in oncology.
METHODOLOGY: Qualitative study conducted in a service in southern Brazil based on a fourth generation evaluation. Between September 2014 and June 2015, 460 hours of operation were observed, and 45 semi-structured interviews and five negotiation meetings were conducted; data were analyzed using the constant comparative method.
RESULTS: Potential services are: provision of outpatient palliative care, home and inpatient care provided by a multidisciplinary and support team, meeting the patient's biological, psychological, social and spiritual needs. Study limitations: ineffective communication between clinical and surgical oncology and palliative care sectors, lack of specialized training for professionals and in interpersonal relationship issues among team members.
FINAL CONSIDERATION: For palliative care progress in the service, some arrangements are required to enhance integrality of care.
BACKGROUND: A child's death affects not only family members but also healthcare professionals involved in patient care. However, the education system for bereavement care in Japan is not systematically established, and care provided is based on healthcare professionals' experiences. We aimed to investigate pediatricians' recognition of and actual circumstances involved in bereavement care in Japan.
METHODS: A qualitative descriptive study was conducted at four facilities in Japan. Data collected with semi-structured interviews of 11 pediatricians were assessed using inductive qualitative analysis.
RESULTS: Pediatricians' recognition of bereavement care was categorized as follows: (1) developing relationships with families before a child's death is important in bereavement care; (2) after the child dies, family involvement is left to the doctor's discretion; (3) coping with a child's death myself through past experience is essential; (4) doctors involved in a child's death also experience mental burden; and (5) a system for the family's bereavement care must be established. Two categories were established according to actual circumstances involved in bereavement care: (1) attention must be given to the emotions of the families who lost a child; (2) doctors' involvement with bereaved families depends on doctors' recognition and expertise.
CONCLUSION: Japanese pediatricians provided bereavement care to families who lost their children in a non-systemized manner. This is necessitates improvement of the self-care of healthcare professionals for grief by improving bereavement care-related education. Additionally, healthcare professionals must be trained, and a national-level provision system must be established to provide high-quality bereavement care for families who lose a child.
OBJECTIVE: To identify common themes and topics that patients nearing the end of life want to discuss when sharing their life stories.
METHODS: Twenty audio-recorded transcripts of open-ended interviews of patients cared for by a palliative care team when approaching the end of life were analyzed using a qualitative analysis.
RESULTS: Qualitative analysis revealed that the primary contextual factors that patients drew upon to generate his or her life story are life events (including upbringing, job, education, travel, trauma, hardships, special events, military history, and hobbies), family and support system, and values and beliefs. Participants used their current medical condition, which included mortality, morbidity, and prognosis, to frame their life story.
CONCLUSION: Patients facing serious illness incorporate four major themes when reflecting upon their lives to create their personal life story: life events, family and support system, values and beliefs, and current medical condition.
Objective: To investigate clinicians' perspectives on the factors that shape the process of advance care planning in a nursing home context.
Design: Interviews. Latent qualitative content analysis.
Setting: Nine nursing homes in Sweden. Subjects: 14 physicians and 11 nurses working at nursing homes.
Main outcome measures:
Participants' views on advance care planning (ACP) at nursing homes.
Results: The analysis of the interviews resulted in four manifest categories: Exploration of preferences and views, e.g. exploring patient wishes regarding end-of-life issues and restrictions in care at an early stage, and sensitivity to patient's readiness to discuss end-of-life issues; Integration of preferences and views, e.g. integration of patient's preferences and staff's and family member's views; Decision & documentation of the ACP, e.g. clear documentation in patient's medical records that are up-to-date and available for staff caring for the patient, and Implementation & re-evaluation of the ACP, e.g. nurse following up after ACP-appointment to confirm the content of the documented ACP. The latent theme, Establishing beneficence - defending oneself against tacit accusations of maleficence, emerged as a deeper meaning of all the four (manifest) parts of the ACP-process
Conclusion: This study stresses the importance of involving patients, family members, and the team in the work with advance care planning in nursing homes. In addition, clear medical record documentation and proficiency in end-of-life communication related to advance care planning for physicians as well as nurses may also be factors that significantly shape advance care planning in a nursing home context. Key Points Advance care planning can help patients to receive care in line with their preferences and can positively impact quality of end-of-life care. Our results describe a process consisting of four manifest categories and one latent theme constituting the process of advance care planning, that may be considered in education in advance care planning. The significance of nurses and physicians perceiving beneficence as well as fear of accusations of maleficence are important factors to contemplate. The study has implications for healthcare staff caring for patients near the end of their lives, in particular patients in nursing homes.
PURPOSE: To analyse the preference of end of life care place in paediatric oncology patients, and to understand the end of life care needs and regrets among the care givers.
METHOD: This was an observational qualitative study. Parents of in-curable paediatric malignancy patients who died during the years 2016-2018 were interviewed using a pre-formed open-ended questionnaire. Fears during the last phase of child's life, most disturbing symptoms, choice of end of life care plan, regret of care givers and reasons for such choices were noted and analysed.
RESULT: Twenty six families were interviewed. A median of 3 months of discordance was noted between declaration of in-curability and acceptance of the same by the family. During terminal months, pain (84.62%) was described as the most bothersome symptom followed by respiratory distress (73.08%). Eighteen families (69%) opted for home-based terminal care, 8 (31%) for hospital-based terminal care. Regret of choice was noted in 62.5% families of the hospital-based care group (separation from home environment being the main reason) and 38.89% of the home-based care group (lack of access to health care personnel and pain medication being the main reasons).
CONCLUSION: Home-based care is the preferred option for end of life care by the care givers. Lack of community-based terminal care support system and availability of analgesics are the main areas to work on in India.
Palmitoylethanolamide (PEA) is a nutraceutical endocannabinoid that was retrospectively discovered in egg yolks. Feeding poor children with known streptococcal infections prevented rheumatic fever. Subsequently, it was found to alter the course of influenza. Unfortunately, there is little known about its pharmacokinetics. Palmitoylethanolamide targets nonclassical cannabinoid receptors rather than CB1 and CB2 receptors. Palmitoylethanolamide will only indirectly activate classical cannabinoid receptors by an entourage effect. There are a significant number of prospective and randomized trials demonstrating the pain-relieving effects of PEA. There is lesser evidence of benefit in patients with nonpain symptoms related to depression, Parkinson disease, strokes, and autism. There are no reported drug-drug interactions and very few reported adverse effects from PEA. Further research is needed to define the palliative benefits to PEA.
REVIEW QUESTION/OBJECTIVE(S): This review aims to identify and synthesize the best qualitative evidence on the experiences of Chinese immigrants receiving palliative care in their country of residence where the culture is predominantly western, and the experiences of their family carers.
INTRODUCTION: The recent increase in international immigration has led to challenges in providing culturally appropriate palliative care. Chinese populations have particular beliefs, values and practices surrounding death and filial piety. These differ significantly from those in western cultures and have significant implications for palliative care service provision. This review will explore the experiences and perceptions of Chinese immigrants and how their cultural beliefs shape their acceptance and decision making related to palliative care.
INCLUSION CRITERIA: The review will include studies on the experiences of Chinese immigrants aged over 18 years old with a terminal medical condition receiving palliative care in outpatient units, hospitals, hospices, specialist palliative care units, homes and community settings in their country of residence where the culture is predominantly western.
METHODS: Eligible studies will be studies with qualitative data including designs such as phenomenology, grounded theory, ethnography, narrative research, qualitative description, action research and feminist research published in English and Chinese. CINAHL, PsycINFO, MEDLINE, Scopus and Web of Science Core Collection will be used and grey literature will be searched using ProQuest Dissertations and Theses, OpenGrey and Caresearch. Appraisal of selected studies will be done with the Joanna Briggs Institute Qualitative Assessment and Review tool. Findings will be synthesized through a meta-aggregative approach to produce a comprehensive set of synthesized findings that can be used as a basis for evidence-based practice.
INTRODUCTION: Anxiety is a common symptom in the palliative phase, and symptom management depends on the competencies of individual professionals. This study aims to get insight into the needs of anxious hospice patients with advanced cancer regarding support.
METHOD: Semi-structured interviews were performed in admitted hospice patients with cancer. Patients admitted from May 2017 till May 2018 were eligible whether or not they were anxious. Interviews were analyzed and coded within predefined topics.
RESULTS: Fourteen patients were included: 10 females, median age 71, and median World Health Organization performance score 3. Most patients were highly educated. Thirteen patients were interviewed within 6 months before death. Information, open communication, sense of control, safety, adequate symptom management, and respect for patients' coping strategy were the 6 main expressed needs.
CONCLUSION: Assessing patients' needs regarding anxiety provided important angles where health-care professionals can make a difference in order to support anxious patients in their final stage of life to realize tailored palliative care. Future research should focus on the development of a systematic approach for health-care professionals to manage anxiety in daily care of terminal patients.
In the context of the end of life, many authors point out how the experience of identity is crucial for the well-being of patients with advanced disease. They define this identity in terms of autonomy, control, or dependence, associating these concepts with the sense of personal dignity. From the perspective of the phenomenology of embodiment, Kay Toombs and other authors have investigated the ways disease can impact on the subjective world of patients and have stressed that a consideration of this personal world can promote understanding and recognition of their experience. Based on the findings of qualitative studies of the perception of dignity and autonomy in patients at the end of life, this analysis assesses concepts such as being-in-the-world in illness, embodiment, lived body versus objective body or the gaze of the other from a Toombsian phenomenological perspective.
In this needs assessment, gathered patient perceptions on how telemedicine video visits might influence their care. Patients in this study (n = 13) were all diagnosed with end-stage cancer and were receiving palliative care at an urban academic medical center. Interview themes addressed: 1. impact on patient's health management, 2. user experience, 3. technical issues and 4. cost and time. Ultimately, despite concerns over truncated physical exams and prescription limits, the majority of patients favored having the opportunity for telemedicine video visits, felt that the doctor-patient relationship would not suffer, had confidence in their or their surrogate's technical abilities to navigate the video visit, had privacy concerns on par with other technologies, had few cost concerns, and believed a video alternative to an in-person visit might increase access, save time as well as increase comfort and safety by avoiding a trip to the office. These results suggest potential for acceptance of video-based telemedicine by an urban population of oncology patients receiving palliative care.
This qualitative case study describes the end-of-life care for a physically healthy, although psychologically dying man. The letters of Countess Moltke to her husband who was sentenced to death and executed during the Nazi regime were analyzed content analytically. Three content clusters emerged, namely, Caring, Comforting, and Providing meaning, all of which were stimulated by Attachment to the dying person and by Expression of empathy, respectively. It is demonstrated that during the final 6 weeks, her care was well adapted to the course of his dying. The findings are summarized by the allegory of the dancing couple.
BACKGROUND: Internationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care.
METHODS: Qualitative study involving a convenience sample of 13 bereaved carers recruited using the Northern Ireland MND Register. Data collection consisted of semi-structured interviews with the bereaved carers of patients who had died 3-24 months previously with a diagnosis of MND. Data were analysed using thematic analysis.
RESULTS: Findings illuminated variations in relation to the levels of holistic care provided to this cohort of patients. Unmanaged respiratory and psychological symptoms caused perceived distress amongst patients. Participants' experiences additionally highlighted reluctance amongst patients with MND to engage with services such as specialist palliative care. Conversely, for those who received input from specialist palliative care services carers portrayed these services to be of great benefit to the patient.
CONCLUSIONS: Patients with MND in Northern Ireland may have many unmet holistic care needs. Key areas that require particular focus in terms of service development include neuromuscular respiratory physiotherapy and psychological services for patients. Future research must explore an optimal model of holistic care delivery for patients with MND and how this can be effectively integrated to best meet this patient cohorts palliative care needs.
The purpose of this qualitative study was to discover the coping strategies used by Spanish (European) women to cope with a pregnancy loss. Sixteen women with miscarriages and stillbirths were interviewed. All of the women were Spanish European. The mean age of the women was 35 years, and most were university graduates, married, employed, and with living children. Audio-recorded interviews and field notes were transcribed and then subsequently coded and analyzed in individual or team sessions. Construction and confirmation of the categories and related themes derived from the data was a collaborative process. Two themes emerged regarding the coping strategies used by women: talking and avoiding. This study expands the theoretical model "Multicultural Model of Coping after Pregnancy Loss" and guides health providers regarding interventions used in practice.
This article examines the experiences of family members when a loved one dies after police contact in the United States. It uses qualitative data from semistructured interviews with the bereaved families of 43 U.S. citizens who died after police contact and considers their experiences as covictims of homicide. It examines how they experience grief in the aftermath of such a death and considers Doka's concept of disenfranchised grief in evaluating how social norms affect their grieving process. It argues that individuals affected by deaths after police contact are often unable to grieve in a way that is socially legitimized. The article finds that disenfranchised grief has a racial dimension with regard to deaths after police contact with non-White families being deeply affected by it due to their position within society, the context in which their loved one died, and in terms of how the deceased was socially constructed.