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.
BACKGROUND: Preparing children for the death of a parent is challenging. Parents are often uncertain if and how to communicate and support their children. Many parents feel it is protecting their children by not telling them about the prognosis. Children less prepared for parental death from a terminal illness are more susceptive to later adversities. To facilitate coping and moderate for such adversities, there is a need to gain insight and understand the experience and challenges confronted by families.
AIM: This review synthesised evidence on the experiences of parents and children when a parent is at end of life to discern their challenges, support needs and factors that facilitated good practice.
DESIGN: Mixed-methods systematic review.
DATA SOURCES: Four electronic databases (CINAHL, PubMed, PsycINFO and Ovid MEDLINE) using MeSH terms and word searches in October 2018. Studies were not limited by year of publication, language or country. Grey literature searches were also completed on Google Scholar and OpenGrey.
RESULTS: In all, 7829 records were identified; 27 qualitative and 0 quantitative studies met the inclusion criteria. Eight descriptive themes were identified, further categorised into two broad themes: (1) barriers and facilitators in sharing the news that a parent is dying and (2) strategies to manage the changing situation.
CONCLUSION: Lack of understanding in relation to the parent's prognosis, denial and feeling ill-equipped were suggested as barriers for parents to share the news with their children. Engagement with social networks, including extended family relatives and peers, and maintaining routines such as attending school were suggested supportive by parents and children. Findings are limited primarily to White, middle-class two-parent families. A number of areas for future research are identified.
People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed.
Objectives: Optimistic expectations about prognosis by surrogate decision-makers in ICUs are common, but there are few data about the causes and clinical consequences. Our objective was to determine the causes of optimistic expectations about prognosis among surrogates and whether it is associated with more use of life support at the end of life.
Design: Prospective, multicenter cohort study from 2009 to 2012.
Setting: Twelve ICUs from multiple regions of the United States.
Subjects: The surrogates and physicians of 275 incapacitated ICU patients at high risk of death.
Measurements and Main Results: Surrogates and physicians completed a validated instrument assessing their prognostic expectations for hospital survival. We determined the proportion of surrogates with optimistic expectations, defined as a prognostic estimate that was at least 20% more optimistic than the physician’s, then determined how frequently this arose from surrogates miscomprehending the physicians’ prognosis versus holding more hopeful beliefs compared with the physician. We used multivariable regression to examine whether optimistic expectations were associated with length of stay, stratified by survival status, and time to withdrawal of life support among nonsurvivors. Overall, 45% of surrogates (95% CI, 38–51%) held optimistic expectations about prognosis, which arose from a combination of misunderstanding the physician’s prognostic expectations and from holding more hopeful beliefs compared with the physician. Optimistic expectations by surrogates were associated with significantly longer duration of ICU treatment among nonsurvivors before death (ß coefficient = 0.44; 95% CI, 0.05–0.83; p = 0.027), corresponding to a 56% longer ICU stay. This difference was associated with a significantly longer time to withdrawal of life support among dying patients whose surrogates had optimistic prognostic expectations compared with those who did not (ß coefficient = 0.61; 95% CI, 0.16–1.07; p = 0.009).
Conclusions: The prevalent optimism about prognosis among surrogates in ICUs arises both from surrogates’ miscomprehension of physicians’ prognostications and from surrogates holding more hopeful beliefs. This optimism is associated with longer duration of life support at the end of life.
For patients at the end of life, the oncologist's care continues beyond the cessation of disease-directed therapy. When cure or even prolongation of life is no longer possible, oncologists have one last task remaining: to provide expert care to patients at the end of life and support for their families. Physical comfort, clear communication, emotional support, helping patients maintain a sense of purpose, clarifying wishes about attempts at resuscitation, working on legacies, addressing patient distress, and helping families as they struggle with their loss are all the work of a team of clinicians, led by the oncologist, who the patient and family continue to look to as their guide, even when no further antineoplastic therapies or immunotherapies can be offered. The team often includes the rest of the oncology team of clinicians, as well as social workers, chaplains, a palliative care clinician, and, when appropriate, a hospice team. Families with young children need specialized counseling and support. Ongoing losses (in identity or function or of roles in the family, community, or workplace) contribute to spiritual and existential distress. The palliative care and hospice teams can help with life reviews and reconnection with sources of spiritual support, including religious rituals, to help reaffirm identity and roles. The oncologist's final responsibility is ongoing communication with the survivors after the patient's death. Survivors appreciate ongoing communication, cards, and phone calls to answer any remaining questions and quell any lingering doubts. These communications also bring closure to the oncologist and oncology team, allowing them to reflect on and grieve their loss and to remember the work they did with the patient and his or her family.
OBJECTIVES: Family caregivers of hospice patients have multiple needs as they try to cope during a stressful time. Translatable interventions effective in improving caregiver outcomes are greatly needed. Our objective was to assess the impact of a problem-solving intervention (called Problem-Solving Intervention to Support Caregivers in End-of-Life Care Settings [PISCES]) to support hospice caregivers on caregiver quality of life and anxiety, and compare its effectiveness delivered face to face and via videoconferencing.
DESIGN: In this 4-year randomized clinical trial, caregivers were randomly assigned to a group receiving standard care with added "friendly calls" (attention control [AC] group), a group receiving standard care and PISCES delivered face to face (F2F), or a group receiving standard care and PISCES delivered via videoconferencing (VC).
SETTING: Home hospice.
PARTICIPANTS: A total of 514 caregivers participated (172 in AC, 171 in F2F, and 171 in VC). Caregivers were predominantly female (75%); mean age was 60.3 years.
INTERVENTION: PISCES includes a structured curriculum delivered in three sessions and motivates caregivers to adopt a positive attitude, define problems by obtaining facts, set goals, and generate and evaluate solutions.
MEASUREMENTS: Quality of life was measured by the Caregiver Quality of Life Index-Revised; anxiety was measured by the Generalized Anxiety Disorder 7-Item. Other measures included the Caregiver Reaction Assessment scale, demographic data, and an exit interview.
RESULTS: Compared with AC, caregivers in the F2F condition had postintervention reduced anxiety (-1.31 [95% confidence interval [CI] = -2.11 to .50]; p = .004) and improved social (.57 [95% CI = .19-.95]; p = .01), financial (.57 [95% CI = .21-.93]; p = .004), and physical quality of life (.53 [95% CI = .19-.87]; p = .01). There were no differences in caregivers in the VC condition compared with the AC condition.
CONCLUSION: The PISCES intervention improves caregiver outcomes and is effective when delivered in person. How to integrate technology to reduce the intervention delivery cost warrants further investigation.
The care of people with life-limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi-structured interviews with four women and six men (N = 10, aged 55-87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.
Education and recognition of death anxiety are important for respiratory therapists. A vital component of respiratory therapy is managing mechanical ventilation and dealing with death and dying. For most institutions, respiratory therapy is a vital component of the rapid response team, code team, and trauma team. Removal of mechanical ventilation is a duty primarily bestowed upon the respiratory therapist. Exposure to death, on a frequent basis, can take an emotional toll and lead to burnout, stress, and increased turnover. Managers and leaders in the hospital must make efforts to provide counseling and education to support respiratory therapists and their ongoing exposure to death and dying. This paper examines coping mechanisms for physicians and paramedics, resulting in tools that can be used to provide support to the respiratory therapist.
OBJECTIVE: The purpose of the current study was to use a mixed-methods approach to assess the perspective of cancer survivors on the bidirectional impact between cancer and their social contexts.
METHOD: A fixed concurrent triangulation mixed-methods survey design was used with open- and closed-ended questions that were predetermined and administered to participants. Quantitative items included demographic questions and the Life Impact Checklist. Qualitative questions were designed to explore the bidirectional impact between the patient and specific contexts including spirituality/faith, the spousal/partner relationship, and the family. A cross-sectional descriptive approach was used to evaluate the quantitative items and the constant comparative method guided the analysis of open-ended questions.Result Among 116 participants (mean age 58.4 years), the majority were female (66.7%) with breast cancer (27.9%). Nearly one-half the respondents endorsed a positive impact of cancer on their spirituality/faith, but qualitative results suggested less of a bidirectional impact. The importance of the spouse/partner during the cancer experience was emphasized, including the subthemes of instrumental and emotional support; however, there was often a negative impact of cancer on the spouse/partner relationship, including sexual functioning. Survivors indicated family members provided instrumental and emotional support, but not as regularly or directly as a spouse/partner.Significance of results Social contexts are important among cancer survivors, with many cancer survivors relying more on their spouse/partner than other family members for support. The cancer experience is stressful not only for survivors, but also for individuals in their social contexts and relationships.