Background: Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with end-of-life decision-making remain under investigated.
Purpose: This study explores the spiritual practices in parents making end-of-life decisions for adolescents on life support with brain stem dysfunction.
Method: A descriptive phenomenological study was conducted through in-depth interviews with three parents of two adolescents in Taiwan. Data were analysed using Colaizzi's seven-step protocol.
Results: Three main themes emerged: (1) faith during decision-making, (2) struggles during decision-making, (3) transformation during decision-making. The findings indicate that "transforming the nature of hope" is the essence of the experience.
Conclusion: Family-centred care, gaining insight into parental spiritual practices, and developing culturally-appropriate care are recommended.
Background: An essential component of palliative care (PC) is providing psychological and existential support to the family caregivers. However, there is scant research on the existential journeys of family caregivers throughout the disease trajectory and beyond.
Objective: This study aimed to obtain a deep understanding of the existential journeys of family caregivers from prognosis notification until after the death.
Setting/Participants: A purposive sample of 22 caregivers of terminally ill family members who had died was recruited at a PC bereavement program in Canada and participated to qualitative phenomenological interviews.
Data Collection: Interpretative phenomenological analysis was used to analyze the data derived from in-depth interviews.
Results: The participants' existential journeys can be described by three dynamic dimensions: (1) from avoidance to integration of death, (2) from meaninglessness to meaningfulness, and (3) from transformation to transmission. The findings highlight the importance to family caregivers of having opportunities to share their experiences as a way to progress on the existential journey.
Conclusions: PC should extend beyond the death of the loved one and expand to include existential aspects of the caregiving experience.
BACKGROUND: Despite a broad consensus and recommendations, numerous international reports or studies have shown the difficulties of implementing palliative care within healthcare services. The objective of this study was to understand the palliative approach of registered nurses in hospital medical and surgical care units and their use of mobile palliative care teams.
METHODS: Qualitative study using individual in depth semi-structured interviews and focus group of registered nurses. Data were analyzed using a semiopragmatic phenomenological analysis. Expert nurses of mobile palliative care team carried out this study. 20 registered nurses from three different hospitals in France agreed to participate.
RESULTS: Nurses recognize their role as being witnesses to the patient's experience through their constant presence. This is in line with their professional values and gives them an "alert role" that can anticipate a patient-centered palliative approach. The physician's positioning on palliative care plays a key role in its implementation. The lack of recognition of the individual role of the nurse leads to a questioning of her/his professional values, causing inappropriate behavior and distress. According to nurses, "rethinking care within a team environment" allows for the anticipation of a patient-centered palliative approach. Mobile Palliative Care Team highlights the major role of physicians-nurses "balance" while providing personal and professional support.
CONCLUSIONS: The Physician's positioning and attitude toward palliative approach sets the tone for its early implementation and determines the behavior of different staff members within healthcare service. "Recognition at work", specifically "recognition of the individual role of nurse" is an essential concept for understanding what causes the delay in the implementation of a palliative approach. Interprofessional training (physicians and nurses) could optimize sharing expertise. Registered nurses consider MPCT as a "facilitating intermediary" within the healthcare service improving communication. Restoring a balance in sharing care and decision between physicians and other caregivers lead care teams to an anticipated and patient-centered palliative approach according to guidelines.
Death in America is changing from hospital to home, which demands complex skills by family caregivers. However, information from family members about the challenges of providing home hospice care until death is scant. To understand the challenges a family caregiver confronts when he/she decides to deliver hospice care and during the actual delivery of the hospice care, we used descriptive phenomenology methods to document the experience of 18 family caregivers as they delivered home hospice care. We learned the decision to begin home hospice was made by a physician, followed frequently by family resistance and refusal to assist. Family caregiver burden is enormous, compounded by fatigue, sleeplessness, and confusion on issues such as morphine dosage and administration. The stages and process of dying, such as transition, baffled family caregivers. All family caregivers agree financial and emotion support, empathic advocacy, and affirmation of their worth are needed to sustain them to care for the dying. The peacefulness following offering a home death comes at a high price to family caregivers. Evidence is needed from a randomized controlled trial as to effectiveness of advocacy support for family caregivers to increase their resiliency and higher probability of a good death for the dying.
Introduction: Motor neuron disease (MND) is a progressive neuromuscular disorder that can have significant and debilitating impact on the affected patient and families. Spouses are the primary carers for persons with MND in India, and the life of the person with MND and their spouse is never the same after the diagnosis.
Aim: The objective was to explore the lived experience of spouses of persons diagnosed with MND.
Methods: A qualitative exploratory study with three-point interviews was conducted with spouse caregivers of two persons diagnosed with MND who were receiving treatment from a national tertiary referral care center for neurological disorders. All the patients were diagnosed as definite MND according to the modified El Escorial criteria. With the spouses, in-depth interviews were conducted at their home, lasting on an average of 1 hour using a semi-structured interview guide (prompts). Interpretative phenomenological analysis was used to derive themes from the interviews.
Results: The major themes emerged from the analysis were meaning of MND which contained the subthemes of delay in diagnosis and deterioration, psychological response across illness trajectory, relationship with the subthemes of changing roles in being acarer, marital relationship, to be seen as doing "right," and communication; adaptation with the subthemes of coping strategies and support system and life without the loved one.
Conclusion: The changes in the lives of spouses and in strategies for caring the partner with deterioration of symptoms in the illness trajectory are explained in this study. The palliative approach in the management of MND has to take into account, the experiences and needs of carers since care happens at home.
AIMS AND OBJECTIVES: This study explores everyday life experience of relatives of people with ALS living at home with mechanical ventilation and formal caregivers.
BACKGROUND: ALS is a rapidly progressive disease affecting not only the patient but also close relatives. A burden is placed on relatives affecting their mental and physical health in settings where they provide care. Few studies have examined the everyday life challenges of close relatives with formal caregivers at home and home mechanical ventilation, which often prolongs survival.
DESIGN: We undertook a qualitative study with a phenomenological-hermeneutic approach inspired by Ricoeur. Eleven close relatives were interviewed and the three-level analysis method developed by Dreyer and Pedersen was conducted. The Consolidated Criteria for Reporting Qualitative Research checklist was used.
RESULTS: Four themes were derived from the data during analysis: Vulnerable relatives fighting to keep track of everything, Formal caregivers - a distressing relief, A prison without personal space, and We are in this together until the end.
CONCLUSIONS: Close relatives of persons with ALS are burdened with everyday life challenges despite having formal caregivers at home, and they feel imprisoned. Despite these challenges and concerns about the end of life of their relative, they stay until the end.
RELEVANCE TO CLINICAL PRACTICE: There is clearly a need to investigate interventions in clinical practice supporting close relatives to prepare them for what to expect during a prolonged disease course.
Background: Palliative care is in its infancy in most of the developing world. We set out to explore the lived experiences of families and caregivers of recently deceased cancer patients in Trinidad and Tobago and to determine the unmet needs of the patients and what recommendations could be derived to improve the current services.
Methods: A phenomenological approach with purposeful sampling was used. Participants were referred by key health professionals. Face-to-face interviews were conducted. Interviews were transcribed verbatim, with analysis and data collection occurring concurrently. Thematic content analysis was used to determine common domains, themes and sub-themes.
Results: Interviews were completed with 15 caregivers. All were spouses or children of the deceased. Ages of the deceased ranged from 43 to 93, the average being 65.5 years. The deceased experienced a variety of cancers including lung, colorectal and oesophageal.
Unmet needs were identified under 4 domains of institutions, community, the family unit and the wider society. Institutional unmet needs were delayed diagnosis and treatment and poor inter-institution coordination. Medical and nursing care failed in the areas of health care providers’ attitudes, pain management and communication. The family unit lacked physical and psychosocial support for the caregiver and financial aid for the family unit. Societal needs were for public education to address myths and cultural beliefs around cancer.
Conclusion: There is need for systemic interventions to improve the care of those dying from cancer in Trinidad and Tobago. Stakeholders need to commit to palliative care as a public health priority, implementing education, planning services and mobilizing community resources.
Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities.
Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life.
Design: A qualitative design with a phenomenological approach was adopted.
Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities.
Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment.
Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust.
BACKGROUND: Compassion fatigue refers to the emotional and physical exhaustion felt by professionals in caring roles, whereas compassion satisfaction encompasses the positive aspects of helping others. Levels of compassion satisfaction and fatigue have been found to be inconsistent in palliative care professionals, which could have serious implications for patients, professionals and organisations.
OBJECTIVES: This study explored the experiences of clinical psychologists working in palliative care, all worked with adults with cancer, to gain an understanding of the impact this work has on their self and how they manage this.
METHODS: A qualitative approach was taken, using semi-structured interviews and interpretative phenomenological analysis.
RESULTS: Three superordinate themes were identified: commitment, existential impact on the self and the oracle. The participants' experiences were characterised by the relationship between themselves and their patients, the influence of working in palliative services on their world view and the impact of organisational changes. Differences between working as a clinical psychologist in palliative care versus non-palliative settings were considered.
CONCLUSIONS: Professionals working in palliative care should be supported to reflect on their experiences of compassion and resilience, and services should provide resources that facilitate staff to practice positive self-care to maintain their well-being.
Background: Malnutrition is a problem in advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients’ and family caregivers’ experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO.
Methods: This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n = 57) were carried out with 20 women considered for HPN and 13 of their family caregivers.
Results: Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8–506) and for those 17 on HPN was 156 days (range 46–506).
Women experienced HPN as one facet of their illness, but viewed it as a “lifeline” that allowed them to live outside hospital. Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state.
Conclusions: Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.
BACKGROUND: This study considers the specific context of the end of life, in particular the agony phase, and the experience of sharing the body observation competence with the relatives of dying patients, in order to consider the effect of such psychological intervention.
METHODS: The research was conducted in two phases: during the pre-exitus period (days or hours before the death of the patient) six relatives received some information .on the phenomenology of agony; during the post-exitus, they participated in semi-structured interviews, which were audio-recorded and transcribed with the purpose of extracting relevant aspects of their experience with their terminally-ill relative. The Interpretative Phenomenological Analysis (IPA) was used to cluster the emerged experiences by thematic analysis, which was performed using the Atlas.ti 7 software.
RESULTS: The relatives' verbatim representation is clustered in three areas of thematic prevalence: context and choice of the hospice, phenomenology of agony and psychological support. The first area shows how essential the choice of the hospice was for the patient. Even if the hospice is perceived as a place of death, it allows to manage the pain and simultaneously relieves the caregiver's burden. The second area describes the process of perception of body changes during agony. Finally, the third area outlines how giving elements to recognise the progression of the dying body and suggestions on the functional behaviour around the agonising patient may fill the cultural lack of practical experience regarding dying.
CONCLUSIONS: The results require further investigation, starting from the positive feedback on the efficacy of a specific support model called "human protocol".
BACKGROUND: An increasing number of the ageing population worldwide is at risk of becoming frail and incapacitated. This has the potential to impact not only on the well-being of individuals but also on the sustainability of healthcare systems.
OBJECTIVE: The aim of this study was to explore the views and experiences of frailty from the perspective of primary care professionals, including nurses, who work directly with older people within the community.
METHODS: A qualitative approach with a descriptive phenomenological methodology was used, which focused on exploration of primary care professionals' current experiences of early detection and prevention of the onset of frailty. Four multi-professional focus groups were held with a total of thirty-three primary care professionals who worked with older people as part of their daily role. Participants included district nurses, general practitioners, home care workers, physiotherapists and social workers.
RESULTS: Professional views encompassed typical patterns of ageing, loneliness, presence of comorbidity, disability and end of life, with social conditions prevalent in most frailty they encountered. Three main themes emerged: the psychosocial nature of frailty, late detection of frailty and barriers to the feasibility of prevention. Physical frailty was considered a constituent part of ageing, which recognised the presence of a skills gap related to the detection of the early signs of frailty. Present health and social care systems are not designed to prevent frailty, and the competencies required by health and social care professionals are not usually included as part of their training curricula. This may hinder opportunities to intervene to prevent associated decline in ability of older adults.
CONCLUSIONS: To enhance the early assessment of frailty and the planning of preventive multi-factorial interventions in primary care and community settings, training and effective detection strategies should be incorporated into the role and daily care activities of primary care professionals.
IMPLICATIONS FOR PRACTICE: Using a multidimensional assessment instrument can help primary care professionals to identify older people who are frail or may become frail. In order to be able to carry out this properly strong inter-professional collaboration is needed. In addition, interventions aimed at preventing frailty or adverse outcomes of frailty should be tailor-made and thus should meet the needs and wishes of an older person.
Background: Awareness of disease status has been identified as a factor in the treatment decision-making process. Women with recurrent ovarian cancer are facing the challenge of making treatment decisions throughout the disease trajectory. It is not understood how women with ovarian cancer perceive their disease and subsequently make treatment decisions.
Purpose: The purpose of this phenomenological study was to understand the lived experience of women with recurrent ovarian cancer, how they understood their disease and made their treatment decisions.
Methods: A qualitative design with a descriptive phenomenological method was used to conduct 2 in-depth interviews with 12 women (n = 24 interviews). Each interview was ~60 minutes and was digitally recorded and professionally transcribed. Data collection focused on patients' understanding of their disease and how patients participated in treatment decisions. A modified version of Colaizzi's method of phenomenological reduction guided data analysis.
Results: Three themes emerged to describe the phenomenon of being aware of disease status: (1) perceiving recurrent ovarian cancer as a chronic illness, (2) perceived inability to make treatment decisions, and (3) enduring emotional distress.
Conclusions and Implications: This study revealed how 12 women conceptualized recurrent ovarian cancer as a chronic disease and their perceived inability to make treatment decisions because of lack of information and professional qualifications, resulting in enduring emotional distress. Future research should replicate the study to confirm the persistence of the themes for racially, ethnically, and religiously diverse patient samples and to improve understanding of awareness of disease status and decision-making processes of patients.
BACKGROUND: People experiencing homelessness have significantly shorter life expectancies and higher rates of morbidity and mortality than the general population. Many barriers have been identified to providing palliative care to this population. This study examines health and social service providers' experiences providing end-of-life care to people experiencing homelessness, seeking recommendations to improve both patient and provider experience.
METHODS: Qualitative study using phenomenological approach. Qualitative and quantitative surveys with 136 health and social service providers in Ontario's South East Local Health Integration Network, in-depth interview with 10 key informants.
FINDINGS: Participants approached the end-of-life care of people experiencing homelessness from a framework of dignity and respect. Themes included barriers to end-of-life care internal to the health care system; care avoidance; the experience of stigma for this population when accessing end-of-life care; lack of provider information and awareness on how to provide care for marginalized groups, how to provide care in the context of substance use, and how to assist clients in accessing the formal palliative care system; and the need for harm reduction approaches to end-of-life care for persons experiencing homelessness.
DISCUSSION: Focusing on harm reduction, and using the framework of Equity-Oriented Health Care to make systemic, cultural, and policy changes to develop a palliative-care system for persons experiencing homelessness may improve care experience for both patients and providers.
BACKGROUND: Thirty-five thousand Canadians are homeless on any given night, and mortality rates are much higher than for the general population. Studies have identified barriers to accessing end-of-life care among the homeless, including logistic barriers and experiences of stigma. This study seeks to explore the experience, goals, fears, and hopes surrounding death in the setting of homelessness or vulnerable housing.
METHODS: Qualitative phenomenological study involving focus groups and in-depth interviews with 31 people with lived experience of homelessness. Additional sociodemographic data collected from participants.
FINDINGS: Themes included extensive experience with death and dying, relationship with mortality, ideas for a good death, and desires for end-of-life care. Participants presented suggestions for improving end-of-life care including care that was delivered by people with lived experience of homelessness and substance use; care that was provided either as outreach or in a welcoming, flexible institutional environment; care that minimized stigma and enhanced dignity; and care that respected people's desires to use substances at the end of life.
DISCUSSION: Participants with lived experience of homelessness were articulate in their desires and needs for end-of-life care. They have extensive exposure to mortality and feel that their needs are not met by the current palliative care system. Recommendations for system change that include harm reduction and equity-oriented health care, as well as a combination of outreach and inpatient services, are necessary before palliative care services will be accessible for this population.
BACKGROUND: An intensive care unit (ICU) features high mortality rates. Witnessing subsequent deaths may affect nurses psychologically and spiritually. Islam has an influence on Muslims' life and death. Nevertheless, little is known about Muslim intensive care nurses' experiences of grief in dealing with the deaths of patients.
AIM AND OBJECTIVES: This study aimed to describe the grief reactions and coping strategies of Muslim nurses in dealing with the death of patients.
DESIGN: This is a qualitative study with a phenomenological approach.
METHODS: Semi-structured individual interviews were conducted. Fourteen participants from an ICU in an Indonesian tertiary public hospital participated in this study. Data were analysed by thematic analysis. Trustworthiness was established by Lincoln and Guba's criteria.
RESULTS: The findings identified four reactions of grief, four factors influencing reactions of grief, and three coping strategies used in dealing with death in an ICU. The reactions of nurse's grief were crying, being sad, feeling disappointed, and feeling guilty. These reactions were related to several factors including the circumstances of the patient's death, nurse's expectation of patient's recovery, relationships with the patient, and the reactions of family. Coping management strategies used by nurses in dealing with their grief comprised: sharing with colleagues, avoiding dying and death situations, and engaging in spirituality.
CONCLUSIONS: The Muslim ICU nurse participants experienced their grieving through a variety of psychological reactions influenced by several factors. Personal coping strategies were revealed in dealing with their grief. However, avoiding dying and death situations affected their duty.
RELEVANCE TO CLINICAL PRACTICE: Attention to nurses' grief should be paid to maintain their psychological well-being and quality of end-of-life care. Providing formal support to enhance grief management is recommended.
OBJECTIVE: To identify the perception of health professionals about neonatal palliative care.
METHOD: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern Portugal. Content analysis was performed.
RESULTS: Despite their lack of training in palliative care, the health professionals showed concern for the dignity, quality of life and comfort of the newborn and family. They expressed emotional and relational difficulties in following the trajectories of serious illness and death and in the ethical decisions regarding the end-of-life.
CONCLUSION: It is emphasized that professionals are sensitive to pain and suffering and reveal dedicated and committed in the care of the newborn and family. They are available to train and embrace the current challenges posed by the constitution of pediatric palliative care teams and to help achieve an organizational culture that advances in such care.
The aims of this present study were to explore the use and meaning of metaphors and images about aging in older people with a death wish and to elucidate what these metaphors and images tell us about their self-understanding and imagined feared future. Twenty-five in-depth interviews with Dutch older people with a death wish (median 82 years) were analyzed by making use of a phenomenological–hermeneutical metaphor analysis approach. We found 10 central metaphorical concepts: (a) struggle, (b) victimhood, (c) void, (d) stagnation, (e) captivity, (f) breakdown, (g) redundancy, (h) subhumanization, (i) burden, and (j) childhood. It appears that the group under research does have profound negative impressions of old age and about themselves being or becoming old. The discourse used reveals a strong sense of distance, disengagement, and nonbelonging associated with their wish to die. This study empirically supports the theory of stereotype embodiment.
Despite the increasing number of people being bereaved by suicide, little is understood concerning the experiences of those bereaved by suicide as they struggle to make sense of a loved one’s death. The current study explored the experiences of four mothers who had been bereaved by suicide and the role of support groups in the meaning-making process following bereavement by suicide. Participants were interviewed and transcribed interviews were then analysed from an interpretative phenomenological perspective. Four main themes were identified: Continuing role of the mother; A never-ending quest; Finding sanctuary; and Rising up from the ashes. These themes relate to a range of emotions following bereavement by suicide, the meaning-making process, the social context and the role of the support group. Clinical implications are discussed in relation to these findings.
The purpose of this qualitative study was to explore the characteristics of posttraumatic growth arising from losing an immediate family member to suicide in Korea. We used interpretative phenomenological analysis for data collection and analysis and conducted in-depth interviews with 11 participants in Korea to evaluate the positive changes subsequent to the suicide. Participants revealed positive outcomes in response to losing an immediate family member to suicide after suffering the “most unimaginable pain” including (a) “Now I know what the most important thing in life is,” (b) “Warm and intimate relationships matter,” and (c) “Survivors of suicide’s search for meaning.” The implications of these findings and avenues for future research are discussed.