A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver’s suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.
BACKGROUND: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking.
AIM: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient.
DESIGN/PARTICIPANTS: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support.
RESULTS: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support.
CONCLUSION: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support.
BACKGROUND: Advance care planning (ACP) is recommended as part of the management of patients with heart failure (HF).
AIMS: To develop and validate ACP support tools for patients with HF.
METHODS: An ACP support tool was developed based on a systematic literature review. A multi-center, prospective before and after study was conducted to evaluate the usefulness of the support tool. This study included 21 patients with HF, 11 patients formed the control group and 10 patients were part of the intervention group who received ACP from medical staff using the ACP support tools developed for this study. Participants of the study were surveyed about their experience of ACP using a 6-point Likert scale.
FINDINGS: All of the healthcare professionals (n=9) involved in the study found the ACP tool useful and about 90% of patients considered the support tool useful. The score for 'the patient did not feel anxious about the future after receiving ACP discussion' was significantly higher (3.5 [3.0, 4.0] vs 2.0 [1.0, 3.0]; P=0.04) in the intervention group that used the ACP tool.
CONCLUSION: ACP support tools are useful to manage patients with HF and could enable effective ACP without increasing patient anxiety.
BACKGROUND: Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear.
AIM: This comparative mixed methods case study examined the person characteristics, quality of perinatal palliative care (PPC) received and parent health outcomes.
METHODS: Bereaved couples, 11 mothers and 3 fathers of minority or mixed races (11 African American and Latino, 1 White Latino and 2 White parents) completed the survey; 7 were interviewed.
RESULTS: Parents rated their general health close to good, physical health close to normal but mental health lower than the population norm. Clinical caseness (abnormal levels) of anxiety were reported in 50% of parents whereas depression scores were normal. The experience of fetal diagnosis and infant death had a negative impact on the health of 40% of participants however, parents could not identify what specifically caused their health problems. Most were satisfied with their PPC but some shared that original providers were not supportive of pregnancy continuation. After the baby's death, 71% reported closer/stronger couple relationships. Two contrasting cases are presented. Once parents found PPC, their baby was treated as a person, they spent time with their baby after birth, and found ways to make meaning through continuing bonds.
CONCLUSION: Despite high overall satisfaction with PPC, bereaved parents were deeply impacted by their infant's death. Mixed methods case study design illuminated the complicated journeys of parents continuing their pregnancy with a LLFC.
There is a distinct lack of literature related to the spiritual care of parents whose children with cancer are at the end of life. This has led to a dearth in evidence about how nurses may intervene with spiritual care interventions to best support these vulnerable parents. The purpose of this scoping review was to examine the evidence regarding the value of spirituality/spiritual care in minimizing the vulnerability of parents whose children were diagnosed with cancer and who faced the end of life. The Arksey and O'Malley methodological framework guided the analysis of the reviewed quantitative and qualitative literature. Spirituality and spiritual care provided bereaved parents and parents of children with cancer with necessary support and enhanced coping to allow them to better deal with this devastating experience. Spirituality and spiritual care instilled hope, assisted in the search for meaning and purpose, and guided parents to develop continuing bonds with their child. Through skillful communication, pediatric oncology nurses may guide parents of children who face the end of life to strengthen relationships that offer support, plan activities that provide opportunities for hope and connection, and identify sources of meaning in their experiences.
BACKGROUND: Many hospitalized older adults require family surrogates to make decisions, but surrogates may perceive that the quality of medical decisions is low and may have poor psychological outcomes after the patient's hospitalization.
OBJECTIVE: To determine the relationship between communication quality and high-quality medical decisions, psychological well-being, and satisfaction for surrogates of hospitalized older adults.
DESIGN: Observational study at three hospitals in a Midwest metropolitan area.
PARTICIPANTS: Hospitalized older adults (65+ years) admitted to medicine and medical intensive care units who were unable to make medical decisions, and their family surrogates. Among 799 eligible dyads, 364 (45.6%) completed the study.
MAIN MEASURES: Communication was assessed during hospitalization using the information and emotional support subscales of the Family Inpatient Communication Survey. Decision quality was assessed with the Decisional Conflict Scale. Outcomes assessed at baseline and 4-6 weeks post-discharge included anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), post-traumatic stress (Impact of Event Scale-Revised), and satisfaction (Hospital Consumer Assessment of Healthcare Providers and Systems).
KEY RESULTS: The mean patient age was 81.9 years (SD 8.32); 62% were women, and 28% African American. Among surrogates, 67% were adult children. Six to eight weeks post-discharge, 22.6% of surrogates reported anxiety (11.3% moderate–severe anxiety); 29% reported depression, (14.0% moderate–severe), and 14.6% had high levels of post-traumatic stress. Emotional support was associated with lower odds of anxiety (adjusted odds ratio [AOR] = 0.65, 95% CI 0.50, 0.85) and depression (AOR = 0.80, 95% CI 0.65, 0.99) at follow-up. In multivariable linear regression, emotional support was associated with lower post-traumatic stress (ß = -0.30, p = 0.003) and higher decision quality (ß = -0.44, p < 0.0001). Information was associated with higher post-traumatic stress (ß = 0.23, p = 0.022) but also higher satisfaction (ß = 0.61, p < 0.001).
CONCLUSIONS: Emotional support of hospital surrogates is consistently associated with better psychological outcomes and decision quality, suggesting an opportunity to improve decision making and well-being.
The purpose of this study is to determine family caregivers' recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals' roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.
This article deals with the issue of perceived social support among 40 bereaved parents who have lost a child in a terrorist attack in Israel. The aim is to gain a better understanding of the nature and quality of the formal and informal support that the parents received. The parents were interviewed using semistructured in-depth interviews. The content analysis revealed that alongside the positive aspects, the parents also emphasized the negative side of the encounter with the social environment. The positive aspects included feeling of appreciation for the assistance in the coping process. The negative aspects included a sense of abandonment and distress. The dialectic nature of the domain, together with a recognition of its importance, points to the need to reconcile between the desire on the part of the social environment to assist the bereaved parent on one hand and ways to implement it on the other hand.
The United States military began to experience a steady increase in suicide rates across all service branches at the inception of the wars in Afghanistan (2001) and Iraq (2003). As the number of suicide deaths increased, so did the number of affected survivors who seek postvention support. Unique issues that accompany suicide death may expose survivors to a more distressing and complicated grief process. Peer support has clinically been observed to be widely utilized by suicide loss survivors. This article explores unique issues accompanying military suicide loss, potential benefits of postvention peer-based support, clinical considerations, and future directions.
OBJECTIVE: To test our hypothesis that an innovative method of early palliative care called "Baby, Attachment, Comfort Interventions" reduces psychological distress in parents of neonates with congenital heart disease.
STUDY DESIGN: Prospective cohort study of parents of neonates with congenital heart disease. Distress was evaluated at admission and discharge using Neonatal Unit Parental Stressor Scale and Depression Anxiety Stress Index-21. Control parents received standard of care. Intervention parents received interdisciplinary interventions aimed at improving neonatal comfort and parenting experience.
RESULTS: Seventy-seven parents participated. Stress decreased in the intervention group (26 parents) but not in the control group (51 parents). There was no decrease in anxiety or depression in either group.
CONCLUSION: Early palliative care reduces stress in parents of neonates with congenital heart disease. Further work is needed to address depression/anxiety in this group of high-risk parents.
OBJECTIVE: To explore generalist palliative care providers' experiences of emotional labour when undertaking conversations around palliative and end-of-life care with patients and families, to inform supportive strategies.
METHODS: Semi-structured interviews conducted with generalist staff (those providing 'primary' or 'general' palliative care, not palliative care specialists) who had attended a communication workshop. Sampling was purposive (by gender, profession, experience). Data were analysed using a framework approach; a sample of transcripts were double-coded for rigour. Data collection and analysis were informed by theories of emotional labour, coping, and communication.
RESULTS: Four ambulance staff, three nurses, two speech and language therapists, and one therapy assistant were interviewed. Five themes emerged: emotions experienced; emotion 'display rules'; emotion management; support needs; and perceived impact of emotional labour. Participants reported balancing 'human' and 'professional' expressions of emotion. Support needs included time for emotion management, workplace cultures that normalise emotional experiences, formal emotional support, and palliative and end-of-life care skills training.
CONCLUSION: Diverse strategies to support the emotional needs of generalist staff are crucial to ensure high-quality end-of-life care and communication, and to support staff well-being.
PRACTICE IMPLICATIONS: Both formal and informal support is required, alongside skills training, to enable a supportive workplace culture and individual development.
OBJECTIVES: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.
METHODS: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.
RESULTS: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45 0.70 and 0.55 0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37 0.61).
SIGNIFICANCE OF RESULTS: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.
Purpose: Caregivers of patients with cancer cope with socioemotional challenges, which can adversely affect their well-being. We developed an intervention, expressive writing and reading (EWR), to promote emotional processing and social connectedness among caregivers. In a single-arm pilot study, we assessed its feasibility and perceived usefulness.
Methods: Caregivers participated in weekly 1.5-hour EWR workshops offered over 20 weeks. After 4 sessions, they completed semistructured interviews, which were analyzed using qualitative descriptive analysis.
Findings: Of 65 caregivers approached, 25 were eligible, 18 consented, and 9 (50%) caregivers completed at least 4 workshops and the interview. Their responses revealed 3 themes: "inner processing," "interpersonal learning," and "enhanced processing and preparedness." Perceived benefits of EWR included emotional and cognitive processing (individual and collaborative), learning from the emotions and experiences of other caregivers, and preparing for upcoming challenges.
Conclusions:Expressive writing and reading can be a safe and cost-effective supportive intervention for caregivers of patients with cancer.
Background: With the legalization of medical assistance in dying (MAiD) in Canada, physicians and nurse practitioners now have another option within their scope of practice to consider alongside hospice palliative care (HPC) to support the patient and family regardless of their choice toward natural or medically assisted death. To elucidate insights and experiences with MAiD since its inception and to help adjust to this new end-of-life care environment, the membership of the Canadian Hospice Palliative Care Association (CHPCA) was surveyed.
Methods: The CHPCA developed and distributed a 16-item survey to its membership in June 2017, one year following the legalization of MAiD. Data were arranged in Microsoft® Excel and open-ended responses were analyzed thematically using NVivo 12 software.
Results: From across Canada, 452 responses were received (response rate: 15%). The majority of individuals worked as nurses (n = 161, 33%), administrators (n = 79, 16%), volunteers (n = 76, 16%) and physicians (n = 56, 11%). Almost 75% (n = 320) of all respondents indicated that they had experienced a patient in their program who had requested MAiD. Participants expressed dissatisfaction with the current psychological and professional support being provided by their health care organization and Ministry of Health - during and after the MAiD procedure.
Conclusion: The new complexities of MAiD present unique challenges to those working in the health-care field. There needs to be an increased focus on educating/training providers as without proper support, health-care workers will be unable to perform to their full potential/scope of practice while also providing patients with holistic and accessible care.
Background: Spirituality is important for many family members of patients in the intensive care unit (ICU). Clinicians without training in spiritual care experience difficulty identifying when family members are experiencing distress of a spiritual nature.
Objective: The purpose of this study was to develop a guide to help clinicians working in the ICU identify family members who may benefit from specialized spiritual support.
Design: ross-sectional study.
Setting/Subjects: A national sample of spiritual health practitioners, family members, and ICU clinicians.
Subjects: A panel of 21 spiritual health practitioners participated in a modified Delphi process to achieve consensus on items that suggest spiritual distress among family members of patients in the ICU through three rounds of remote review followed by an in-person conference and a final round of panelist feedback. Feedback on the final set of items was obtained from an end-user group of four family members and six ICU clinicians.
Measurements: A total of 220 items were iteratively reviewed and rated by panelists. Forty-six items were identified as essential for inclusion and developed into a clinical guide, including an introduction (n = 1), definitions (n = 2), risk factors (n = 10), expressed concerns (n = 12), emotions (n = 7) and behaviors (n = 7) that may suggest spiritual distress, questions to identify spiritual needs (n = 6), and introducing spiritual support (n = 1).
Conclusions: We have developed an evidence-informed clinical guide that may help clinicians in the ICU identify family members experiencing spiritual distress.
BACKGROUND: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life.
METHODS: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: a research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: an outline of the prototype was developed based on stage 1 and 2; and Stage4-User testing: interviews with caregivers testing the prototype website.
RESULTS: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication.
CONCLUSIONS: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia.
Cet article est le deuxième d'une série de deux qui se voit consacré au concept de présence chez les infirmières en soins palliatifs (SP), dans le cadre de la programmation de recherche SATIN II (SATisfaction, le sens au travail et le bien-être des INfirmières, Fillion et al. 2017). Le premier article visait à mieux comprendre l'expérience vécue de la présence selon le point de vue d'infirmières en SP. La présente étude qualitative a pour sa part comme objectif d'explorer les effets possibles d'une intervention de groupe basée sur le sens et la pleine conscience sur l'expérience de la présence des infirmières. Des entretiens semi-structurés ont été menés auprès de huit infirmières qui oeuvraient exclusivement dans un service de SP après leur participation à l'intervention de groupe. Nos analyses des récits des participantes nous ont permis de catégoriser en deux groupes les effets de l'intervention sur la présence des infirmières, soit les bienfaits de l'intervention : 1) être plus présente à soi ; 2) mieux faire face au stress du quotidien ; 3) revenir au "ici et maintenant" ; 4) accroître sa conscience de la présence et 5) donner sens au prendre soin. Nous avons également soulevé certains défis associés à l'intervention. En conclusion, notre recherche souligne la nécessité d'accompagner les soignants dans leur pratique de la présence et de la pleine conscience dans le cadre de leur travail.
BACKGROUND: Health care professionals should prevent and relieve suffering in carers of patients with advanced cancer. Despite known positive effects of systematic carer support, carers still do not receive sufficient support. Carers have reported to be less satisfied with coordination of care and involvement of the family in treatment and care decisions than patients. In a rural district of Mid-Norway, cancer palliative care services across specialist and community care were developed. Participants' experiences and opinions were investigated as part of this development process.
METHODS: The aim of this qualitative study was to explore and describe health care professionals' experiences with carer support from their own perspective. Data were collected in focus groups. Purposeful sampling guided the inclusion. Six groups were formed with 21 professionals. The discussions were audio-recorded, transcribed, and analyzed using systematic text condensation.
RESULTS: In the analyzis of the focus group discussions, ten categories emerged from the exploration of health care professionals' carer support, assessment of needs, and factors hampering carer support: 1) dependent on profession, role, and context, 2) personal relationship, 3) personal skills and competence, 4) adjusted to the stage of the disease, 5) informal assessment of carers' needs, 6) lack of education 7) lack of systems for carer consultations, 8) lack of systems for documentation, 9) lack of systems for involving GPs, and 10) lack of systematic spiritual care.
CONCLUSIONS: Health care professionals built a personal relationship with the carers as early as possible, to facilitate carer support throughout the disease trajectory. Systematic carer support was hampered by lack of education and system insufficiencies. Organizational changes were needed, including 1) education in carer support, communication, and spiritual care, 2) use of standardized care pathways, including systematic carer needs assessment, 3) systematic involvement of general practitioners, and 4) a system for documentation of clinical work with carers.
BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described.
AIM: (1) To investigate parental experiences with clinicians and (2) to provide practical recommendations and behaviors clinicians could emulate to avoid conflict.
DESIGN: Participants were asked to describe their best and worse experiences, as well as supportive clinicians they met. The results were analyzed using mixed methods.
SETTING/PARTICIPANTS: Parents of children with trisomy 13 and 18 who were part of online social support networks. A total of 503 invitations were sent, and 332 parents completed the questionnaire about 272 children.
RESULTS: The majority of parents (72%) had met a supportive clinician. When describing clinicians who changed their lives, the overarching theme, present in 88% of answers, was trust. Parents trusted clinicians when they felt he or she cared and valued their child, their family, and made them feel like good parents (69%), had appropriate knowledge (66%), and supported them and gave them realistic hope (42%). Many (42%) parents did not want to make-or be part of-life-and-death decisions. Parents gave specific examples of supportive behaviors that can be adopted by clinicians. Parents also described adverse experiences, generally leading to conflicts and lack of trust.
CONCLUSION: Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated.