BACKGROUND: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning.
AIM: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties.
DESIGN: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis.
SETTING/PARTICIPANTS: We included bereaved parents, health care providers and stakeholders of care networks.
RESULTS: Key elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focus of professionals, who endorse brief recommendations for procedures in case of emergencies, supplemented by larger advance directives. Implementation hindrances include emotional barriers of stakeholders, disagreements between parents and professionals and difficulties with emergency services. Discussion timing should take into account parental readiness. The intervention should be repeated at regular intervals, considering emerging needs and increasing awareness of families over time. Involving children and adolescents in advance care planning remains a challenge.
CONCLUSION: A paediatric advance care planning intervention should take into account potential pitfalls and barriers including issues related to timing, potential conflicts between parents and professionals, ambiguity towards written advance directives, the role of non-medical carers for paediatric advance care planning implementation, the need to involve the child and the necessity of an iterative process.
Purpose: Physical activity (PA) is increasingly being used in hospice care as a rehabilitation strategy to help patients manage symptoms and improve quality of life. However, little is known about how to design and deliver interventions that promote uptake and maintenance of PA in this population. Single-level approaches (i.e., psychological models) have primarily been used to study factors that influence PA engagement among patients with advanced, incurable disease and therefore offer a limited perspective on strategies that target changes beyond the individual level. This study explored perspectives on factors perceived important for influencing PA participation in hospice care using a social-ecological framework.
Method: Patients (n = 27) and health providers (n = 5) from multiple hospices (n = 5) across the UK were involved in this study. Data were collected using focus group and individual semi-structured interviews and analyzed using a thematic framework approach.
Results: Eight main themes were perceived to be important for influencing PA engagement at the individual, interpersonal, physical environment, community, and policy levels including: (1) PA as therapy; (2) apprehension about PA-induced harm; (3) group-based PA with peers; (4) supervised PA sessions; (5) limited facilities and access; (6) patient-centered approach; (7) lack of a strong PA culture and; (8) absence of a policy and guidance for PA provision.
onclusion: Hospice-based PA interventions that target multiple levels simultaneously may be more effective at successfully changing and sustaining patients' PA behavior. Study findings provide evidence-based recommendations that may facilitate the effective delivery of PA interventions in hospice care.
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.
BACKGROUND: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion.
AIM: To understand nonreligious theistic parents' spirituality and to explore how parents discuss death with their terminally ill children in mainland China.
DESIGN: Qualitative study.
SETTING/PARTICIPANTS: This study was conducted in the hematology oncology center at Beijing Children's Hospital. Participants in this study included 16 bereaved parents.
RESULTS: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents' spiritual needs. Parents' spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism.
CONCLUSION: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient's personal belief in death should be assessed before discussing death with them.
BACKGROUND: Facilitating patient conversion to hospice at end of life is a prominent clinical concern. Enrollment in outpatient palliative care services is often assumed to encourage seamless transition to hospice care, but this has not been demonstrated. Moreover, decisions to convert from palliative care to hospice are generally treated as dichotomous, thus hampering our ability to understand decision processes.
OBJECTIVE: To examine medical decision-making among patients who are prospectively evaluating whether to convert from palliative care to hospice.
DESIGN: Qualitative case study, using in-depth interviews and constant comparative method.
SETTING/PATIENTS: Terminally ill patients currently enrolled in outpatient palliative care services (N = 26) and their caregivers (N = 16), selected purposely for maximum variation in condition and personal background.
MEASUREMENTS: Themes identified in qualitative in-depth interviews.
RESULTS: Patients rarely refused hospice outright but more often postponed using a "soft no," in which they neither accepted nor overtly refused hospice. Justifications patients and caregivers offered for why hospice was not needed (yet) appeared in these themes: (1) not seeing the value added of hospice, (2) assuming the timing is premature, and (3) relying on extensive health-related support networks that justify or endorse continuation of active care.
CONCLUSIONS: Despite assumptions to the contrary, benefits associated with utilization of outpatient palliative care services have the potential to incentivize the delay of hospice in some cases. Clinical interactions with outpatient palliative care patients should consider the influence of these broad social support systems when discussing hospice options.
Hmong Americans have typically been unwilling to use biomedical palliative care for end-of-life needs. This has resulted in confusion and frustration for Hmong patients, families, and nurses. Hmongs' end-of-life care choices for family members usually involve in-home caregiving provided by the family using a combination of biomedicine and traditional healing methods. Health care decisions are made for the patient by the family and community in this familistic culture. A qualitative approach was used to explore the beliefs that ultimately determine end-of-life care goals and strategies for Hmong patients. Semistructured interviews were conducted with 15 family caregivers of terminally ill patients and 5 shamans and Hmong funeral officiants. Several themes affecting care choices were identified, including cultural legacies of the responsibility of end-of-life caregiving by the family, the desire for family privacy in caregiving, and the role of community in the care for the dying, as well as completion of the rituals that ensure the soul of the deceased reaches the afterlife. Suggestions for improving communication between Hmongs and biomedical providers include providing information about end-of-life care beliefs and strategies to biomedical care providers and providing information to Hmong patients and families about hospice and palliative care options and services to support family care.
BACKGROUND: To make end-of-life (EOL) decisions is a complex and challenging task for intensive care physicians and a substantial variability in this process has been previously reported. However, a deeper understanding of intensivists' experiences and attitudes regarding the decision-making process is still, to a large extent, lacking. The primary aim of this study was to address Swedish intensivists' experiences, beliefs and attitudes regarding decision-making pertaining to EOL decisions. Second, we aimed to identify underlying factors that may contribute to variability in the decision-making process.
METHOD: This is a descriptive, qualitative study. Semi-structured interviews with nineteen intensivists from five different Swedish hospitals, with different ICU levels, were performed from February 1st to May 31st 2017.
RESULTS: Intensivists strive to make end-of-life decisions that are well grounded, based on sufficient information. Consensus with the patient, family, and other physicians is important. Concurrently, decisions that are made with scarce information or uncertain medical prognosis, decisions made during on-call hours and without support from senior consultants cause concern for many intensivists. Underlying factors that contribute to the variability in decision making are lack of continuity among senior intensivists, lack of needed support during on-call hours and disagreements with physicians from other specialties. There is also an individual variability primarily depending on the intensivist's personality.
CONCLUSION: Swedish intensivists' wish to make end-of-life decisions based on sufficient information, medically certain prognosis and consensus with the patient, family, staff and other physicians. Swedish intensivists' experience a variability in end-of-life decisions, which is generally accepted and not questioned.
BACKGROUND: There is little information about how healthcare professionals feel about providing palliative care for patients with a substance use disorder (SUD). Therefore, this study aims to explore: 1) the problems and needs experienced by healthcare professionals, volunteers and experts-by-experience (HCP/VE) during their work with patients with SUD in a palliative care trajectory and; 2) to make suggestions for improvements using the quality of care model by Donabedian (Structure, Process, Outcome).
METHODS: A qualitative study was conducted, consisting of six focus group interviews which consisted of HCP/VE working with patients with SUD in a palliative care phase. At the end of the focus group interviews, participants structured and summarized their experiences within a Strengths, Weaknesses, Opportunities and Threats (SWOT) framework. Interview transcripts (other than the SWOT) were analysed by the researchers following procedures from the Grounded Theory Approach ('Grounded Theory Lite'). SWOT-findings were not subjected to in-depth analysis.
RESULTS: HCP/VE stated that within the Structure of care, care networks are fragmented and HCP/VE often lack knowledge about patients' multiplicity of problems and the time to unravel these. Communication with this patient group appears limited. The actual care-giving Process requires HCP/VE a lot of creativity and time spent seeking for cooperation with other caregivers and appropriate care settings. The latter is often hindered by stigma. Since no formalized knowledge is available, care-delivery is often exclusively experience-based. Pain-medication is often ineffective due to active substance use. Finally, several Outcomes were brought forward: Firstly, a palliative care phase is often identified only at a late stage. Secondly, education and a (mobile) team of expertise are desired. Thirdly, care for the caregivers themselves is often de-prioritized.
CONCLUSIONS: Better integration and collaboration between the different professionals with extensive experience in addiction, palliative and general curative care is imperative to assure good palliative care for patients with SUD. Currently, the resources for this care appear to be insufficient. Development of an educational program and social mapping may be the first steps in improving palliative care for patients with severe SUD.
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: Opioids are high-risk medicines used in high doses and volumes in specialist palliative care inpatient services to manage palliative patients’ pain and other symptoms. Despite the high volume of opioid use in this care setting, serious errors with opioids are exceedingly rare. However, little is known about the factors that mitigate opioid errors in specialist palliative care inpatient services.
Aim: To explore palliative care clinicians’ perceptions of factors that mitigate opioid errors in specialist palliative care inpatient services.
Methods and design: A qualitative study using focus groups and semi-structured interviews.
Participants and setting: Registered nurses, doctors, and/or pharmacists (‘clinicians’) who were involved with and/or had oversight of the services’ opioid delivery and/or opioid quality and safety processes, employed by one of three specialist palliative care inpatient services in metropolitan NSW.
Findings: Fifty-eight participants took part in this study, three-quarters (76%) of whom were palliative care nurses. A positive opioid safety culture was central to mitigating opioid errors in specialist palliative care inpatient services. This culture of opioid safety was founded on clear and consistent safety messages from leadership, clinicians empowered to work together and practise safely, and a non-punitive approach to errors when they occurred. The clinical nurse educator was seen as pivotal to shaping, driving and reinforcing safe opioid delivery practices across the palliative care service.
Conclusion: Creating and sustaining a positive opioid safety culture, and promoting non-punitive approaches to opioid error and reporting, is essential to mitigating opioid errors in the specialist palliative care inpatient setting.
International clinical practice guidelines recommend that patients with chronic heart failure receive timely and high-quality palliative care. However, integrating palliative care is highly variable and dependent on decision-making and care models. This meta-synthesis aimed to examine health care professionals' decision-making processes and explore factors impacting decisions to refer or deliver palliative care in chronic heart failure. The electronic databases SCOPUS, CINAHL, and Medline were searched. Included studies were those that reported health care professionals' perceptions of palliative care in chronic heart failure through qualitative data collection, were written in English, and were peer-reviewed articles. Included articles were analysed using Thomas and Harden's approach. The dual-process theory was used and applied a priori to organise the findings. The perception of palliative care as a transition and active treatment failure fit within the intuitive system of thinking in the dual-process theory. The theme that overlapped into both intuitive and analytical systems of thinking was acquiring patient and illness information themes reflecting the analytical system of thinking were professional role and experience, pre-existing decision pathways, and balancing viewpoints. This meta-synthesis identified factors influencing the decision-making process in referring patients with chronic heart failure to palliative care. The findings from this review highlight the need for further development of decision-making tools or facilitate guidelines to assist health care professionals' shared decision-making to improve patient outcomes.
OBJECTIVE: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States.
METHODS: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care.
RESULTS: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice.
CONCLUSION: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.
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.
Health information and communication are key elements that allow patients and family members to make decisions about end-of-life care and guarantee a death with dignity.
Objective: To understand caregivers' experiences regarding health information and communication during the illness and death of family members.
Methods: This qualitative study was conducted in Andalusia based on the paradigm of hermeneutic phenomenology. Participants were caregivers who had accompanied a family member at the end of life for over 2 months and less than 2 years. Five nominal groups and five discussion groups were established, and 41 in-depth interviews with 123 participants were conducted. Atlas.ti 7.0 software was used to analyze the discourses. A comprehensive reading was carried out along with a second reading. The most relevant units of meaning were identified, and the categories were extracted. The categories were then grouped in dimensions and, finally, the contents of each dimension were interpreted and described given the appropriate clarifications.
Results: Four dimensions of the dying process emerged: differences in caregivers' perceptions of information and communication, a conspiracy of silence, consequences of the absence or presence of information, and the need for a culture change.
Conclusions: Poor management of health information and communication at the end of life increased the suffering and discomfort of patients and their families. The culture of denying and avoiding death is still present today. A change in education about death would better enable health professionals to care for patients at the end of life.
BACKGROUND: Increasing numbers of older adults are living with kidney disease. For those with comorbidities, conservative management of end-stage kidney disease is a viable option: dialysis may afford limited or no survival benefit, and perceived burdens may outweigh benefits. Conservative management focuses on: maintaining remaining kidney function; symptom management; and quality of life. Common symptoms in conservatively managed kidney disease include: fatigue; anorexia; nausea and vomiting; pain and pruritis. Chronic disease is associated with biographical disruption and a loss of sense of self. Coping strategies are shaped by illness perceptions, but little is known of illness perceptions of people living with conservatively managed kidney disease. This study aimed to explore the experience, impact and understanding of conservatively managed end-stage kidney disease among older adults.
METHODS: Secondary analysis of qualitative interviews analysed using thematic analysis. Twenty people with conservatively managed end-stage kidney disease were recruited from 3 UK renal units: median age was 82 (range, 69-95); 9 women, 11 men.
RESULTS: Participants described the invisibility and intangibility of kidney disease, and challenges in attributing symptoms to the disease. They described a spectre-like presence, sapping their energy and holding them down. For some, it was hard to differentiate symptoms of the illness from characteristics of aging, resulting in challenges in illness attribution, and disconnectedness from the illness.
CONCLUSIONS: Participants described challenges in attributing their symptoms to kidney disease which negatively impacted upon their wellbeing, and ability to accept an adjusted sense of self. Understanding these challenges is critical in the management conditions such as end-stage kidney disease where prognosis may be poor, and where an increase in symptom distress may suggest a marked deterioration in their condition, or a change in phase of illness. Clinical services need to recognize the illness experience (alongside more symptom led approaches), including the invisibility, intangibility, and disconnectedness, and address this through specific interventions focused on improving clinical assessment, communication and education, alongside peer and professional support.
Background: Care transitions from the hospital to hospice are a difficult time, and gaps during this transitions could cause poor care experiences and outcomes. However, little is known about what gaps exist in the hospital-to-hospice transition.
Objectives: to understand the process of hospital-to-hospice transition and identify common gaps in the transition that result in unsafe or poor patient and family caregiver experiences.
Design: We conducted a qualitative descriptive study using semistructured interviews with health care workers who are directly involved in hospital-to-hospice transitions. Participants were asked to describe the common practice of discharging patients to hospice or admitting patients from a hospital, and share their observations about hospital-to-hospice transition gaps.
Setting/Subjects: Fifteen health care workers from three hospitals and three hospice programs in Portland, Oregon.
Measurements: All interviews were audio recorded and analyzed using qualitative descriptive methods to describe current practices and identify gaps in hospital-to-hospice transitions.
Results: Three areas of gaps in hospital-to-hospice transitions were identified: (1) low literacy about hospice care; (2) changes in medications; and (3) hand-off information related to daily care. Specific concerns included hospital providers giving inaccurate descriptions of hospice; discharge orders not including comfort medications for the transition and inadequate prescriptions to manage medications at home; and lack of information about daily care hindering smooth transition and continuity of care.
Conclusion: Our findings identify gaps and suggest opportunities to improve hospital-to-hospice transitions that will serve as the basis for future interventions to design safe and high-quality hospital-to-hospice care transitions.
OBJECTIVES: There 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.
METHODS: Qualitative 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.
RESULTS: Overall, 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.
CONCLUSIONS: The 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.
Background: Motor neurone disease is a terminal neurological illness with no known cure. It is often referred to as a ‘family disease’ with the ripples causing additional implications for children and young people. As such, little is known about how to best support young people (24 years old and under) (WHO, 2019)) when a family member dies from the disease. One potential solution is through use of a digital legacy whereby videos which document a person’s life, memories and achievements are purposefully recorded by an adult during their illness. However, due to this being an emerging area of research, little is known about whether a digital legacy may support or hinder bereavement for young people affected by the disease.
Aim: To investigate healthcare professionals, specialists and experts views, perceptions and experiences of using digital legacies with bereaved young people due to motor neurone disease.
Design: A qualitative study underpinned by interpretative phenomenological analysis.
Setting/participants: Twenty healthcare professionals, specialists and experts were recruited using a maximum purposive sampling method. Open-ended interviews were conducted in participants’ place of work either over the telephone or by the lead researcher. Ethical approval was granted by a university ethics committee and Health Research Authority (HRA).
Findings: Two key overarching themes were identified from the data: perceived benefit and value for bereaved young people using a digital legacy and challenges and barriers for bereaved young people using a digital legacy.
Conclusion: A number of potential challenges and considerations were identified. However, the use of a digital legacy was perceived to be a feasible and valuable method of support for young people bereaved as a result of motor neurone disease.
Le cancer du col utérin est fréquent chez les jeunes femmes en zone rurale et vu souvent au stade tardif. La présente étude avait pour objectif de questionner les facteurs responsables des souffrances physiques et psychologiques de ces patients en fin de vie. La question de la fin de vie qui fait référence ici aux soins palliatifs reste une des perspectives non négligeable de sa prise en charge. Il s'agit d'une étude qualitative et rétrospective à visée descriptive et concerne une série de trois cas de cancer du col de l'utérus suivis à l'hôpital Saint Vincent de Paul au cours de l'année 2017. Les données ont été collectées à partir des dossiers de soins des patientes. Ces données ont été analysées selon la méthode de création et gestion de code-books et plus particulièrement le codage par catégories ontologiques. Les résultats de ce travail nous ont permis d'accuser les facteurs tels que le retard de la suspicion et du diagnostic du cancer du col utérin, la difficulté d'accès aux soins holistiques ainsi que la précarité sociale comme prétexte des souffrances physiques et psychologiques que connaissent ces patientes reçues dans le milieu éloigné des métropoles en fin de vie. Cette étude permet d'insister sur les approches de soins palliatifs comme composante incontournable de la prise en charge en milieu rural.
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time.
METHODS: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient.
RESULTS: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services.
CONCLUSION: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.