PURPOSE: The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters.
DESIGN AND METHODS: A purposive sample of 10 parents of inpatient children with CCCs was recruited from a pediatric palliative care unit in a Portuguese public hospital. A demographic form and audio-recorded semi-structured, face-to-face interviews were conducted with each participant to explore the experiences, processes, and meanings of hope, and to describe how parents of children receiving pediatric palliative care perceived the usefulness of receiving therapeutic letters. The interviews were transcribed verbatim, and using a thematic analysis, a systematic approach to data analysis was completed.
FINDINGS: Data analysis resulted in three main themes including Trust in the Future; Strengthening Hope; and Moments of Hope. Findings highlight the positive influence of therapeutic letters including supporting parental hope, facilitating personal inner-strengthening, recognition of parental skills, and promotion of self-efficacy during hospitalization. The themes and related subthemes add value to the existing literature and highlight the need for supportive palliative nursing care aimed at promoting parental hope.
PRACTICE IMPLICATIONS: To optimize the value of supporting parental hope, therapeutic letters can be delivered at the time of diagnosis, during times of celebration, and when learning the difficult tasks of daily childcare. Additional research can inform the development of a formal hope-based intervention to provide an evidence base from which to enhance the well-being of parental caregivers of children who have CCCs.
When prenatal screening reveals serious concerns for a baby, pediatric palliative care teams can help. Such teams meet with pregnant women and their families to build rapport, explain the medical concerns, delineate options, and outline anticipated outcomes. Throughout, palliative care teams strive for families to feel respected and supported in their grief.
BACKGROUND: For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers' feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death.
METHODS: A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann's qualitative method for analysis.
RESULTS: Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: "Personal factors", "Healthcare professionals" and "Organization" of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security.
CONCLUSION: Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.
BACKGROUND: Ensuring high quality patient-centered care for critically ill COVID-19 patients presents unprecedented challenges. Many patients become critically ill unexpectedly and have not previously discussed their healthcare wishes. Clinicians lack experience with this illness and therefore struggle to predict patient outcomes.
MEASURES: Critical care medicine (CCM) providers were surveyed about the effectiveness and efficiency of a pilot intervention.
INTERVENTION: Proactive palliative care rounding with CCM providers on COVID-19 intensive care units.
OUTCOMES: 54% of CCM providers responded to the survey (21/39). CCM providers rated the intervention highly across all domains. CCM providers frequently identified that early palliative involvement was critical to providing families with information and support when separated from their loved ones.
CONCLUSIONS/LESSONS LEARNED: This pilot study found that proactive rounding improves critical care provider assessments of quality of care for patients and families and allows CCM providers to focus their efforts on managing complex physiology and surges.
INTRODUCTION: Despite palliative care being offered to paediatric cancer patients, it has limited utilisation and often excludes parental support. Therefore, this review aims to consolidate evidence regarding experiences and needs of parents of end-of-life palliative paediatric oncology patients.
METHODS: Six electronic databases were searched as follows: CINAHL, The Cochrane Library, Embase, PubMed, Scopus and PsycINFO. Included studies were appraised using the Critical Appraisal Skills Programme Checklist. They were then analysed using a two-step approach comprising firstly meta-summaries followed by meta-synthesis for generating fresh insights to the topic.
RESULTS: Thirteen studies were included. Three themes emerged as follows: (1) normalising the pain; (2) failure as a parent; and (3) importance of communication and social support. Parental experiences included moving on despite the pain and harbouring hopes for their children. However, parents felt immense guilt and a sense of failure in carrying out their parental roles. Effective communication with healthcare providers, availability of family support and religion were necessary to help them cope.
CONCLUSIONS: Given the emotional challenges faced by parents, healthcare policies and practices should be revised to include parental support in paediatric palliative care services. Future healthcare communication trainings should consider parental need for sensitivity in communication, empathy and kindness from healthcare professionals.
BACKGROUND: Moral distress is a neglected issue in most palliative education programmes, and research has largely focused on this phenomenon as an occupational problem for nursing staff.
RESEARCH QUESTION: The primary outcome of this study was to explore the causes of morally distressing events, feelings experienced by nurses and coping strategies utilised by a nursing population at an Italian teaching hospital. A secondary outcome of this qualitative study was to analyse whether palliative care or end-of-life care education may reduce morally distressing events.
RESEARCH DESIGN: A hermeneutic-phenomenological qualitative study was performed.
PARTICIPANTS AND RESEARCH CONTEXT: Participants were recruited through snowball sampling. The interviews were conducted and recorded by one interviewer and transcribed verbatim.
ETHICAL CONSIDERATIONS: Ethical approval was obtained from the Institutional Review Hospital Board.
FINDINGS: Six main themes emerged from the interview analyses: (1) the causes of moral distress; (2) feelings and emotions experienced during morally distressing events; (3) factors that affect the experience of moral distress; (4) strategies for coping with moral distress; (5) recovering from morally distressing events; and (6) end-of-life accompaniment. Varying opinions regarding the usefulness of palliative care education existed. Some nurses stated that participation in end-of-life courses did not help them cope with morally distressing events in the ward, and they believe that existing courses should be strengthened and better structured.
DISCUSSION: In this study, moral distress was often associated with poor communication or a lack of communication between healthcare professionals and the patients and/or their relatives and with the inability to satisfy the patients' last requests. According to our findings, the concept of 'good' end-of-life accompaniment was extremely important to our sample for the prevention of morally distressing events.
CONCLUSION: Nurses who work in the onco-haematological setting frequently experience moral distress. Determining the causes of moral distress at early stages is of paramount importance for finding a solution.
Background: Burnout is an occupational syndrome that leads to mental health problems, job turnover, and patient safety events. Those caring for critically ill patients are especially susceptible due to high patient mortality, long hours, and regular encounters with trauma and ethical issues. Interventions to prevent burnout in this population are needed. Preliminary studies suggest debriefing sessions may reduce burnout. This study aims to assess whether participation in regular debriefing can prevent burnout in intensive care unit (ICU) clinicians.
Methods: A randomized controlled trial will be conducted in two large academic medical centers. Two hundred ICU clinicians will be recruited with target enrollment of 100 physicians and 100 non-physicians (nurses, pharmacists, therapists). Participants must have worked in the ICU for the equivalent of at least 1 full time work week in the preceding 4 weeks. Enrolled subjects will be randomized to virtually attend biweekly debriefing sessions facilitated by a psychotherapist for 3 months or to a control arm without sessions. Our debriefs are modeled after Death Cafés, which are informal discussions focusing on death, dying, loss, grief, and illness. These sessions allow for reflection on distressing events and offer community and collaboration among hospital employees outside of work.
The primary outcome is clinician burnout as measured by the Maslach Burnout Inventory (MBI) Score. Secondary outcomes include depression and anxiety, as measured by the Patient Health Questionnaire 8 (PHQ-8) and Generalized Anxiety Disorder 7-item scale (GAD-7), respectively. Questionnaires will be administered prior to the intervention, at 1 month, at 3 months, and at 6 months after enrollment. These values will be compared between groups temporally. Qualitative feedback will also be collected and analyzed.
Discussion: With ICU clinician burnout rates exceeding 50%, Death Café debriefing sessions may prove to be an effective tool to avert this debilitating syndrome. With COVID-19 limiting social interactions and overloading ICUs worldwide, the virtual administration of the Death Café for ICU clinicians provides an innovative strategy to potentially mitigate burnout in this vulnerable population.
Background: Family meetings facilitate the exploration of issues and goals of care however, there has been minimal research to determine the benefits and cost implications.
Aims: To determine: (1) if family caregivers of hospitalised patients referred to palliative care who receive a structured family meeting report lower psychological distress (primary outcome), fewer unmet needs, improved quality of life; feel more prepared for the caregiving role; and receive better quality of end-of-life care; (2) if outcomes vary dependant upon site of care and; (3) the cost-benefit of implementing meetings into routine practice.
Design: Pragmatic cluster randomised trial involving palliative care patients and their primary family caregivers at three Australian hospitals. Participants completed measures upon admission (Time 1); 10 days later (Time 2) and two months after the patient died (Time 3). Regression analyses, health utilisation and process evaluation were conducted.
Results: 297 dyads recruited; control (n = 153) and intervention (n = 144). The intervention group demonstrated significantly lower psychological distress (Diff: –1.68, p < 0.01) and higher preparedness (Diff: 3.48, p = 0.001) at Time 2. No differences were identified based on quality of end of life care or health utilisation measures.
Conclusions: Family meetings may be helpful in reducing family caregiver distress and enhancing their preparedness for the caregiving role and it appears they may be conducted without increased hospital health utilisation impacts; although opportunity costs need to be considered in order to routinely offer these as a standardised intervention. Additional health economic examination is also advocated to comprehensively understand the cost-benefit implications.
Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12615000200583
OBJECTIVE: Parents often feel ill-equipped to prepare their dependent children (<18 years old) for the death of a parent, necessitating support from professionals. The aim of this study is to explore health and social care professionals' (HSCPs) experiences and perceptions of providing supportive care to parents regarding their children, when a parent is dying from cancer.
METHODS: Semi-structured qualitative interviews were conducted with 32 HSCPs, including nurses, allied health professionals, social workers and doctors from specialist or generalist roles, across acute or community sectors.
RESULTS: HSCPs' perceptions of the challenges faced by many families when a parent is dying from cancer included: parental uncertainties surrounding if, when and how to tell the children that their parent was dying, the demands of managing everyday life, and preparing the children for the actual death of their parent. Many HSCPs felt ill-equipped to provide care to parents at end of life concerning their children. The results are discussed under two themes: (1) hurdles to overcome when providing psychological support to parents at end of life and (2) support needs of families for the challenging journey ahead.
CONCLUSIONS: There appears to be a disparity between HSCPs' awareness of the needs of families when a parent is dying and what is provided in practice. HSCPs can have a supportive role and help equip parents, as they prepare their children for the death of their parent. Appropriate training and guideline provision could promote this important aspect of end of life care into practice.
Limited evidence suggests carers of people with pulmonary fibrosis (PF) have a variety of information and support needs. This pilot focus group discussion, carried out in 2019, aimed to explore the needs of carers of people with pulmonary fibrosis and evaluate the impact of a UK hospice PF carers’ support group. Analysis revealed: (1) loneliness and connection, (2) negotiating with and motivating their loved-ones, and (3) the importance of the best environment for support as key themes. Participants reported a need for both practical and emotional support with the carers’ own health sometimes neglected. This evaluation concluded that peer support specifically with other PF carers was hugely valuable to the participants, as was the hospice environment itself. It is recommended that PF-specific carer support is considered when designing services for people with pulmonary fibrosis.
BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs.
AIM: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs.
DESIGN: A scoping review.
DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF).
RESULTS: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs.
CONCLUSION: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.
Burnout, a condition characterized by emotional exhaustion, depersonalization, and decreased personal accomplishment, has been studied in many disciplines in health care, including nursing, medicine, and social work. The purpose of this study was to examine the relationship between perceived organizational support, coworker social support, the nursing practice environment, and nurse demographics (age, years of nursing experience, education level, marital status, and sex) on burnout in a national sample of palliative care nurses. The study aims were (1) to examine the relationship between perceived organizational support, coworker social support, and nursing practice environment on burnout in palliative care nurses; (2) to examine the relationship between age, years of nursing experience, education level, marital status, and sex on burnout in palliative care nurses; and (3) to examine potential moderators (perceived organizational support and coworker social support) on the relationship between demographic characteristics and palliative care nurse burnout. A convenience sample of 73 Hospice and Palliative Nurses Association registered nurses who were bedside caregivers was recruited from Hospice and Palliative Nurses Association's membership. Data were analyzed using Pearson correlation and regression modeling. Findings indicated palliative care nurses had moderate to high levels of burnout. There was a negative correlation between burnout and perceived organizational support, and between burnout and coworker social support. The nursing practice environment of palliative care nurses was favorable; perceived organizational support and coworker social support were not moderators for demographics of age and years of experience and their relationship to burnout.
BACKGROUND: Euthanasia has been regulated by law under strict conditions in the Netherlands since 2002. Since then the number of euthanasia cases has constantly increased, and increased exponentially for patients with dementia (PWD). The number of euthanasia requests by such patients is even higher. Recently, an interview study showed that physicians who are confronted with a PWD's euthanasia request experience problems with communication, pressure from relatives, patients, and society, workload, interpretation of the law, and ethical considerations. Moreover, if honoured, the physician and patient may interpret the right moment for euthanasia differently.
AIM: To identify ways of supporting GPs confronted with a PWD's euthanasia request.
DESIGN AND SETTING: Two expert nominal group meetings were organised with Dutch care physicians for older people, GPs, legal experts, a healthcare chaplain, a palliative care consultant, and a psychologist.
METHOD: A total of 15 experts participated in the meetings. Both meetings were audio-recorded, transcribed verbatim, and analysed using thematic analysis.
RESULTS: Four themes emerged from the meetings: support provided by healthcare professionals, influencing public opinion, educational activities, and managing time and work pressure. The need for support was considered highest for GPs for all of these themes.
CONCLUSION: Consensus was reached with the help of experts on support needs for GPs confronted with euthanasia requests from PWD. A concise and clear explanation of the law is strongly desired. Changing public opinion seems the most challenging and a long-term aim. Communication training for finding the right balance between the physician's professional responsibility and the patient's autonomy should be made available, as a short-term aim.
Providing home care to children with complex physical health needs is an emotionally challenging role. Extant literature and documents such as the Cavendish Review (2013) have reported that a large proportion of care for this population is carried out by non-registered staff (support workers). Provision of clinical supervision for nurses working in palliative care is increasing, however, supervision needs of support workers are commonly neglected. This paper sought to synthesise what is known about clinical supervision practices for support workers in paediatric palliative care (PPC). A literature review was conducted in accordance with integrative review guidelines. 315 papers were identified initially, 15 studies were included in this review. Four commonalities were identified: importance of team cohesion, varying degrees of formality, self-awareness and practicalities. Support workers received varying forms of supervision and some facilitators faced organisational difficulties involving staff in supervision. Support workers who received staff support generally appreciated it in recognition that their work is complex and emotionally difficult. This paper highlighted that further research should investigate the efficacy of clinical supervision as a method of reducing stress and burnout for support workers. Any implementation of supervision should involve a considered approach to training and supervision to ensure fidelity.
BACKGROUND: Caring for loved ones with palliative needs can be very stressful for carers'. To address this growing issue, an online Home Caregiver Support Program course was created to provide information to non-professional home caregivers about end-of-life care.
OBJECTIVES: To measure non-professional caregivers' perceived level of competence in addressing physical, psychological, social, and spiritual needs before and after completing online training modules.
METHODS: Learners rated their competence before and after completing online modules addressing 4 key dimensions relevant to palliative caregivers. Self-ratings of competence were assessed through surveys, completed before and after the online modules. Scores from before and after each module were compared to determine if the online course had increased participant competence. The Wilcoxon signed rank test was used to analyze participant responses to the pre- and post-survey questions.
RESULTS: A total of 176 participants who completed one or more of the online modules between July 2017-December 2018, 70 (40%) of the participants completed at least one pre- and post-module survey and did not declare themselves as a professional caregiver. Participating in the online Home Caregiver Support Program increased participants' ratings of perceived competence in all domains (p < .01). This significance was maintained when professional caregivers were added to our analysis.
CONCLUSION: After the completing the modules, participants' self-ratings of perceived competence increased suggesting that participants completing the online program had improved knowledge in addressing the physical, psychological, social, and spiritual challenges faced by non-professional caregivers.
Context: The WHO recognizes the need to attend to patients' spiritual needs as being fundamental to comprehensive and high-quality end-of-life care. Spiritual needs must be attended to since the resolution of biological and psychosocial issues is insufficient to reduce patients' suffering. Associations have been found between spiritual needs and other variables of importance for patients in palliative care. Despite the consensus that exists regarding the importance of assessing and attending to spiritual needs, professionals encounter many difficulties in attempting to do so.
Objectives: Our study aims to demonstrate the benefits that the Kibo therapeutic interview in palliative care patients can have for spirituality, demoralization, and resilience.
Methods: A parallel randomized controlled trial of two groups was undertaken. Information on 60 palliative care patients during pre- and post-intervention time points was gathered.
Results: ANOVAs showed a statistically significant effect of the intervention on the dimension of transpersonal spirituality. The ANCOVA for the effect of the intervention on resilience also pointed to its effectiveness. When the means of demoralization were examined, a higher decrease in the levels of demoralization for patients in the intervention group was observed, when compared to patients in the control group.
Conclusion: Our findings point to this interview as an effective means to attend to the spiritual needs of palliative patients, reducing demoralization and increasing resilience. Future research could focus on a broader sample and on the effects of this interview on family caregivers, mourners, and health care professionals.
Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psychosocial support for family members providing end-of-life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family members report a lack of support from hospital-based healthcare professionals.
BACKGROUND: Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers.
Methods: An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia.
Results: 393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful.
Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored "goodness of fit" support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role.
OBJECTIVE: Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units and providers who work with them.
DESIGN/METHODS: Mixed methods convergent analysis.
SETTING: Canadian paediatric tertiary care university hospital.
PARTICIPANTS: All bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires.
RESULTS: Since 2011, eight bereaved parents were involved in a large number of activities mostly related to palliative care (research, education or clinical care initiatives). Three engaged in peer-to-peer support activities while the others preferred activities outside of clinical units and/or without direct interactions with other families. All of them reported that their participation had positive impacts, but two parents also reported a reactivation of traumatic experiences during a medical simulation activity. All participants expressed a desire for further collaboration. Motivation to contribute gravitated around two central themes: helping others and helping themselves. Many wanted to give back, help other families, improve the system and meet with providers who had cared for their child. All stated that this kind of involvement empowered them and gave meaning to their experiences. Providers and researchers all reported positive experiences, mainly due to the unique perspectives of bereaved parents who took part in their projects.
CONCLUSIONS: With careful recruitment and supervision, some bereaved parents can become resource parents involved in different types of activities. It is important to understand the positive impacts this type of engagement can have on their healing process and to control the risks related to their participation. Research is needed to develop pertinent tools and measures to evaluate the outcomes and impacts of their participation.
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty.
Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role.
Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child.
Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.