PURPOSE: Understanding the end-of-life psychosocial needs of cancer patients at home is a knowledge gap. This study describes the trajectory of psychosocial symptoms in the last 6 months of life among cancer decedents who were receiving home care.
METHODS: Observational population-based cohort study of cancer decedents who were receiving home care services between 2007 and 2014. Decedents had to have at least one home care assessment in the last 6 months of life for inclusion. Outcomes were the presence of psychosocial symptoms (i.e., anxiety, loneliness, depression, social decline, caregiver distress, and cognitive decline) at each week before death.
RESULTS: Our cohort included 27,295 unique cancer decedents (30,368 assessments), of which 58% died in hospital. Fifty-six percent were older than 74, and 47% were female. The prevalence of all symptoms increased approaching death, except loneliness. Social decline (48%-78%) was the most prevalent psychosocial symptom, though loneliness was reported in less than 10% of the cohort. Caregiver distress rose over time from 15%-27%. A third of the cohort reported issues with cognitive impairment. Multivariate regression showed that physical symptoms such as uncontrolled pain, impairment in independent activities of daily living, and a high level of health instability all significantly worsened the odds of having a psychosocial symptom in the last 3 months of life.
CONCLUSION: In this large home care cancer cohort, trajectories of psychosocial symptoms worsened close to death. Physical symptoms, such as uncontrolled pain, were associated with having worse psychosocial symptoms at end of life.
Les décès sont potentiellement fréquents à l’hôpital et notamment en gériatrie. Les internes en médecine se déclarent en difficulté pour assurer un accompagnement médical de qualité dans les situations de fin de vie. Afin de les soutenir dans leur formation clinique nous rapportons l’expérience d’ateliers d’expression mensuels, neutres, confidentiels pour leur permettre d’adapter leur pratique et prévenir les risques psychosociaux inhérents à la confrontation avec la mort.
Context: Cancer is a life-changing diagnosis accompanied by significant emotional distress, especially for children with advanced disease. However, the content and processes of discussing emotion in advanced pediatric cancer remain unknown.
Objectives: To describe the initiation, response, and content of emotional communication in advanced pediatric cancer.
Methods: We audiorecorded 35 outpatient consultations between oncologists and families of children whose cancer recently progressed. We coded conversations based on Verona Coding Definitions of Emotional Sequences.
Results: About 91% of conversations contained emotional cues, and 40% contained explicit emotional concerns. Parents and clinicians equally initiated cues (parents: 48%, 183 of 385; clinicians: 49%) and concerns (parents: 51%; clinicians: 49%). Children initiated 3% of cues and no explicit concerns. Emotional content was most commonly related to physical aspects of cancer and/or treatment (28% of cues and/or concerns, present in 80% of conversations) and prognosis (27% of cues and/or concerns, present in 60% of conversations). Clinicians mostly responded to emotional cues and concerns implicitly, without specifically naming the emotion (85%). Back channeling (using minimal prompts or words that encourage further disclosure, e.g., uh-huh) was the most common implicit response that provided space for emotional disclosure (32% of all responses). Information advice was the most common implicit response that reduced space for further emotional disclosure (28%).
Conclusion: Emotional communication in advanced pediatric cancer appears to be a subtle process where parents offer hints and clinicians respond with non-emotion-laden statements. Also, children were seldom engaged in emotional conversations. Clinicians should aim to create an environment that allows families to express emotional distress if and/or when ready.
Conceptualizations of luxury usually derive from individuals who are agentic and empowered. Building upon the consumer-centered experiential movement, this paper deviates from researching the typical, listening instead to consumer narratives associated with luxury in contexts where agency is transitioning. We revisit notions of sacred and profane within the liminal space of palliative and end-of-life care. Adopting purposeful sampling, and agency enhancing storytelling, pathographies in particular, consumption experiences are narrated by patients, families, and bereaved users (n = 140) of multiple hospices (n = 5) in the UK. Findings shift the evolving consumer centric conceptualization of luxury into conceptions of liminal space, place (hospices as cathedrals), and people (community). A psychosocial narrative emerges which conceptualizes experiences as lived, personalized, integrated, familiar, transformational, hedonic, eudaimonic, and (dis)connected. Our discussion extends notions of the sacred and profane into the mundane and illustrates the ways in which those navigating a liminal space encounter unexpected yet astonishing luxury experiences.
Palliative care (PC) is perhaps the most inherently interdisciplinary specialty within health care. Comprehensive PC is delivered by a core team of physicians, nurses, social workers, spiritual care providers, pharmacists, and others who address the broad range of medical, psychosocial, and spiritual needs of those living with serious illness. While PC clinicians are typically skilled in screening for distress, the best path to follow when patients screen positive for psychosocial distress or exhibit mental health challenges may not always be clear. This article brings together the perspectives of experienced social workers practicing across PC and hospice settings. It seeks to identify opportunities and rationale for the integration of palliative social work (PSW) in the provision of quality, person-centered, family-focused, and culturally congruent care for the seriously ill. Increasing recognition of the impact of social determinants of health highlights the critical importance of including PSW if we are to better understand and ultimately address the broad range of factors that influence people's quality of life.
There are more adults than children living with congenital heart disease (CHD) due to improvements in surgical and medical CHD management today. In 2011, though, fewer than 30% of adult CHD patients were following up with specialized providers. An ineffective transition from pediatric to adult-focused medical care can result in lapses in CHD medical care, patient noncompliance, and increased risk of late complications. Early involvement of a palliative care team offers development of autonomy, identification of potential barriers to care, and support for patient and family that may improve transition success and quality of life in CHD patients.
BACKGROUND: Every year, 2.6 million babies are stillborn worldwide. Despite these figures, stillbirth remains a relatively ignored public health issue. The wider literature suggests that this is due to the stigma associated with stillbirth. The stigma of stillbirth is seen as possibly one of the greatest barriers in reducing stagnant stillbirth rates and supporting bereaved parents. However, empirical evidence on the extent, type, and experiences of stillbirth stigma remain scarce.
AIM: This study aimed to explore the stigma experiences of bereaved parents who have endured a stillbirth.
METHODS: An online survey of closed and open-questions with 817 participants (n=796 female; n=17 male) was conducted in high-income countries.
FINDINGS: Based on self-perception, 38% of bereaved parents believed they had been stigmatised due to their stillbirth. Thematic data analysis revealed several themes consistent with Link and Phelan's stigma theory- labelling, stereotyping, status loss and discrimination, separation, and power. One more theme outside of this theory- bereaved parents as agents of change was also discovered.
CONCLUSION: Bereaved parents after stillbirth may experience stigma. Common experiences included feelings of shame, blame, devaluation of motherhood and discrimination. Bereaved parents also reported the silence of stillbirth occurred during their antenatal care with many health care providers not informing them about the possibility of stillbirth. Further research needs to be undertaken to explore further the extent and type of stigma felt by bereaved parents after stillbirth, and how stigma is impacting the health care professional disseminating and distributing resources to pregnant women.
When a child loses a parent, their life is forever changed. A world that seemed safe and predictable suddenly becomes strange, frightening, and uncertain (Green & Connolly, 2009). In the time following the loss, it may be difficult for the child to imagine how to ever rediscover the joy of life and move past the loss. The loss of a parent is unfortunately not entirely uncommon, as Pearlman, Schwalbe and Cloitree (2010) report that about 4% of all children in the Western world lose one or both parents before the age of 18.
CONTEXT: Rates of psychological symptoms for patients with serious illness are high, but there has been limited research investigating psychological symptoms at the very end of life.
OBJECTIVES: To better understand the prevalence, severity and correlates of psychological distress at the very end of life.
METHODS: This retrospective cross-sectional study utilized caregiver proxy interviews. Caregivers were contacted after their care recipient recently died while receiving home hospice care and invited to participate in a brief interview with a trained research assistant. Patient, caregiver and hospice utilization data were also abstracted from electronic medical records, and caregiver burden scores were assessed via interview.
RESULTS: N = 351 caregivers were included in the study. According to caregivers, 46.4% of patients had moderate-to-severe anxiety, as assessed with a score of >=4 on the Edmonton Symptom Assessment Scale (ESAS) and 43% had moderate-to-severe symptoms (ESAS score >=4) of depression in the last week of life. Symptoms of anxiety and depression were significantly associated with caregiver burden scores and inversely associated with patient age.
CONCLUSION: Psychological symptom management at the very end of life is essential to providing comprehensive hospice care. Our study revealed that nearly half of all home hospice patients experience moderate-to-severe symptoms of anxiety and/or depression in the last week of life. Future research is needed to improve psychological symptom management at the very end of life in order to improve the quality of life for both patients and their families.
The diagnosis of cancer for anyone is a time of fear and uncertainty. For young adults (YAs) diagnosed with acute leukemia (AL), there are the additional challenges related to lengthy aggressive in-hospital treatment, multiple concurrent symptoms, and decreased well-being. The purpose of this study was to explore the experiences of YAs with AL undergoing induction chemotherapy. This study used a nested qualitative longitudinal design with a convenience sample. Qualitative data were collected using semistructured interviews, and participants were invited to maintain journals. The semistructured interviews were audiotaped, transcribed, and loaded into Atlas.ti for analysis. Common themes and categories were verified and used to disseminate the findings. Seven YAs, mean age 32 (SD, 4) years, participated in this study. Three thematic classifications emerged: getting through, supported yet isolated, and information exchange preferences, which detail how these YAs processed and coped during treatment. The findings from this study provide important insights for nurses regarding coping mechanisms that YAs apply, which included relying on technology and social media platforms. Additionally, the YAs in this study discussed their need for information. The findings from this study may provide insights for clinicians currently caring for YAs with AL, while also directing future palliative care research endeavors.
The purpose of this study was to determine the effect of the Grief Support Program on the bereavement of parents whose babies had died. The sample consisted of 77 couples. The data was collected by the Texas Revised Inventory of Grief and the Coping Strategies Inventory. The intervention group was offered before, immediately after, and a month after death of their baby in accordance with the Grief Support Program guideline. The Grief Support Program did not affect grief intensity in the short term but had a positive effect 1 year later.
Background: Perinatal bereavement is traumatic for many parents. Not only is the experience itself emotionally painful, the impact on their lives is made more difficult if midwives are unable to provide appropriate care to the parents.
Aim of the study: To explore within an Irish context, the psychosocial factors that impact on midwives’ confidence to provide bereavement support to parents who have experienced a perinatal loss.
Design: A mixed methods sequential explanatory design was used to complete this two-phased study from August 2013 to July 2014. Ethical approval was granted from Ethics Committees of three maternity hospitals and a University in Ireland. The recruitment process for the survey occurred in August 2013 and July 2014 for the focus groups.
Methods: A series of univariate and multivariate analysis were used to analyze the quantitative data using IBM Statistical Package for the Social Sciences (SPSS; version 20). The qualitative data were analyzed using qualitative content analysis. Steps were taken to ensure data validity and reliability.
Results: The overall meta-inference of this study is that the majority of the midwives did not have adequate levels of confidence to provide bereavement support to grieving parents. The psychosocial factors that impact on midwives’ confidence were identified as the midwives’ awareness of the needs of bereaved parents, their own inner strength and the organizational support they received at their place of work.
Conclusion: Improving midwives’ bereavement support knowledge and skills is essential for promoting their confidence. Midwives also need adequate emotional and practical support from their organizations.
General well-being is known to deteriorate sharply at the end of life. However, it is an open question how rates of terminal change differ across affective and evaluative facets of well-being and if individual difference correlates operate in facet-specific ways. We examined how discrete affective states (happy, angry, fearful, sad) and satisfaction with key life domains (health, leisure, family) change as people approach death and how differences in end-of-life trajectories are related to sociodemographic (age, gender, education), physical health (disability, body mass index, physician visits), and psychosocial characteristics (perceived control, social orientation, living with a partner). We applied growth models to 9-year annual longitudinal data of 864 participants (age at death: M = 75 years, 41% women) from the nationwide German Socio-Economic Panel (SOEP). Findings revealed commonalities and specificities in terminal change: Six of seven facets became increasingly fragile late in life (6 to 35 times steeper terminal change than age change), but at vastly different rates of change (e.g., steep declines in happiness and satisfaction with health vs. stability in anger) and at different levels at which changes occurred. Commonalities and differences also emerged for the correlates: Those who perceived more control over their lives experienced generally more favorable late-life affect and satisfaction trajectories, whereas other correlates operated in more facet-specific ways. For example, participants living with a partner were happier and more satisfied with family life throughout their last years, but also reported more fear and steeper increases in sadness, a picture of bittersweet emotions at the end of life.
En 2015 et 2016, le législateur a accordé de nouveaux droits aux personnes en fin de vie afin qu'elles soient accompagnées dans les meilleures conditions. Les directeurs d'Ehpad doivent se saisir de ces opportunités pour mettre en place une culture palliative en s'appuyant sur une démarche psychosociale. (R.A.).
Origine : BDSP. Notice produite par EHESP knR0xpDs. Diffusion soumise à autorisation
This paper explores the biopsychosocial and spiritual needs of adolescents and young adults (AYA) with life-threatening or terminal illnesses. AYA are situated between childhood and adulthood (ages 15-25) and have distinct biopsychosocial and spiritual needs unique to their developmental stage. Having a life-threatening or terminal illness directly challenges normal AYA developmental tasks and identity formation. AYA experience more troubling physical symptoms during the dying process compared to other age groups, which leads to significant psychological distress and an increased need for pharmacological treatments. In general, AYA desire to be fully informed and involved in the health care decision-making process, leading to ethical dilemmas when the AYA is a minor and their wishes differ from the wishes of their legal guardian(s). Social workers are especially well-equipped to serve this population due to aligning professional standards and ability to advocate for holistic care within interdisciplinary teams. Additional research is needed to tailor holistic interventions to meet the needs of this population.
Although the introduction of antiretroviral therapy has rendered HIV a chronic illness, inconsistent engagement in HIV care by key populations limits its public health impact. Poor engagement in care is especially prevalent among vulnerable populations with mental health and substance use disorders. Beyond structural and health system considerations, psychosocial factors may present challenges to sustained engagement. We conducted a qualitative study using in-depth interviews with 31 primarily African American, urban-based individuals, many with past or current drug use and mental disorders, living with HIV. Participants identified several psychosocial barriers that detract from their motivation to attend appointments and take medication. These included mental distress or detachment over a lack of purpose in life; denial about the need to be engaged in care; insufficient trust in the efficacy of care or the health system; deaths of loved ones leading to bereavement or loss of social support; and engagement in specific avoidance behaviors like drugs and alcohol. The study findings suggest that more comprehensive HIV care, which integrates mental health and substance abuse services in order to enhance meaning and address coping and grief, may be important. Considering these services in addition to improving the logistical components of care such as cues/reminders, accessibility, and patient-provider communication may improve intervention packages.
Dans le contexte du développement des directives anticipées (DA) en France depuis 2016, notre étude avait pour objectif d’étudier les connaissances, représentations et modalités d’intégration de ce dispositif auprès de médecins. Nous avons conduit une recherche qualitative monocentrique par entretiens de recherche auprès de médecins (n = 12). Une analyse de contenu thématique a été réalisée sur l’ensemble des entretiens. L’analyse de contenu des entretiens a mis en évidence une connaissance relative des DA, des réserves quant au rôle des médecins par rapport à ce dispositif et un ensemble de limites perçues concernant leur mise en œuvre (complexité des situations de fin de vie ; impact sur la relation de soin ; répercussion psychologique ; incertitude ; caractère « changeant » des DA ; culture des services de soins). Des limites d’ordre psychosocial expliquent en partie les réticences concernant ce dispositif et contribuent à une mise en question de sa « légitimité » ou « utilité ». L’enjeu du développement des connaissances sur les DA doit s’accompagner d’une réflexion sur les conditions psychosociales de son acceptabilité et de son intégration dans les pratiques et la relation soignantes.
Within radiation oncology, there is often minimal attention on radiotherapy with palliative benefits due to the overlying focus on curative treatments. Historically at the University of Pennsylvania, advanced-stage patients are cared for by cancer site-specific teams rather than a more rapid treatment service model that focuses on patients' symptom needs and larger clinical issues within a palliative framework. Thus, the University of Pennsylvania created a designated palliative radiation oncology team to focus on the complex medical and relational issues of metastatic cancer patients. Social workers play a critical role in patient and family conversations about advance directives, care needs, and end-of-life goals and fears as treatment regimens and outcomes continue to unfold. The palliative radiation oncology social worker developed and instituted a new, formalized assessment tool called the "palliative radiation oncology psychosocial care plan" in the electronic medical record. A retrospective analysis of 26 palliative radiation oncology patients under treatment between February and August 2016 was conducted. Of these patients treated with palliative radiation, 19% completed an advance directive after the social work intervention. This model highlights advance care planning as a best practice and encourages end-of-life discussions as a routine part of the oncology workflow.
CONTEXT: Quality of life is a central focus of care in advanced cancer. Specialized instruments, such as the QUAL-EC, may be useful to assess psychosocial issues associated with quality of life unique to this population.
OBJECTIVES: To evaluate the measurement of the psychosocial dimensions of quality of life using the German translation of the QUAL-EC-Cancer-Psychosocial Questionnaire (QUAL-EC-P), including factor structure and psychometrics.
METHODS: 183 patients with advanced cancer from the University Medical Center Hamburg-Eppendorf and University Medical Center Leipzig completed the QUAL-EC-P. We conducted exploratory factor analysis, and item and reliability analysis. We examined convergent validity with correlations between the scale and relevant psychological constructs.
RESULTS: The sample was 60% female with mean age of 57.7 (SD=11.7). We extracted three factors accounting for 44% of the variance aligning with the structure of the instrument. The QUAL-EC-P showed good to acceptable internal consistency for the QoL-psychosocial total score (a=0.77), the Life Completion subscale (a=0.77) and the Relationship with Healthcare Provider subscale (a=0.81). The Preparation for End of Life subscale had adequate albeit low internal consistency (a=0.64) because concerns about family were less associated with financial worry and fear of death than expected. The psychosocial dimensions of QoL correlated negatively with depression (r=-0.27, p=0.001), anxiety (r=-0.32, p=0.001), demoralization (r=-0.63, p=0.001), attachment insecurity (r=-0.51, p=0.001) and positively with spiritual well-being (r=0.63, p=0.001).
CONCLUSION: The QUAL-EC-P may be used to assess the psychosocial aspects of quality of life and promote their clinical discussion in patients with advanced cancer.
PURPOSE: To examine (a) approaches used by oncologists to administer the Palliative Care Needs Assessment Tool (PC-NAT) in consultations with patients with advanced cancer and their caregivers, (b) potential of this tool to facilitate discussion of psychosocial issues, and (c) whether use of the tool alters the length of consultations.
DESIGN: A qualitative analysis was undertaken of audiotaped, outpatient consultations.
SAMPLE AND METHODS: 20 individuals with advanced cancer and their caregivers who participated in an interrupted time series study of the impact of the systematic utilisation of the Palliative Care Needs Assessment Tool (PC-NAT) had a total of 48 consultations audiotaped. These included 13 baseline recordings where PC-NAT was not completed and 35 that included completion of the PC-NAT. Audio-tapes were coded and SPSS was used to calculate impact of using the PC-NAT on consultation length.
FINDINGS: This study revealed that the administration of the PC-NAT was not optimal to identify and discuss psychosocial concerns. The PC-NAT was delivered without an explanation of the function of the assessment and in jargonistic terms, and tended not to be integrated into the consultation. The majority of the content of interactions related to physical health issues. The range of empathic responses given by the oncologist in regards to patient and caregiver concerns ranged from low (denial/disconfirmation) to very high (confirmation), though codes "dismissing" or "denying" were mainly assigned to psychosocial concerns compared to medical ones. There was no significant increase in consultation time when the routine needs assessment was included. Conclusion & Interpretation: Staff training to enhance understanding and facilitate the timely use of the PC-NAT is warranted as well as to enhance response to unmet needs as part of routine care needs assessment tool.