Key ethical challenges for healthcare workers arising from the COVID-19 pandemic are identified: isolation and social distancing, duty of care and fair access to treatment. The paper argues for a relational approach to ethics which includes solidarity, relational autonomy, duty, equity, trust and reciprocity as core values. The needs of the poor and socially disadvantaged are highlighted. Relational autonomy and solidarity are explored in relation to isolation and social distancing. Reciprocity is discussed with reference to healthcare workers' duty of care and its limits. Priority setting and access to treatment raise ethical issues of utility and equity. Difficult ethical dilemmas around triage, do not resuscitate decisions, and withholding and withdrawing treatment are discussed in the light of recently published guidelines. The paper concludes with the hope for a wider discussion of relational ethics and a glimpse of a future after the pandemic has subsided.
Purpose: The aim of this study was to gain more insight into the psychosocial well-being of the recently bereaved spouses who took care of their partners with cancer.
Method: A qualitative study was developed, taking a phenomenological approach. Eleven former caregivers and spouses of patients who died of cancer at, or after, the age of 64, participated in individual in-depth interviews. Only caregivers who were bereaved for a minimum of three months and maximum of one year were interviewed. The analysis of the data was based on the Qualitative Analysis Guide of Leuven.
Results: The first moments of bereavement included feelings of disbelief, regret and relief. A feeling of being overwhelmed during this time was reported by some, others sought distraction from their grief. Loneliness, emotional fluctuations and a sense of appreciation for the support of loved ones were dominant themes. Also, gratitude and the importance of consolation played a role in the participants' well-being. When participants addressed the matter of moving forward in life, most explained how they wanted to keep the memories of their partner alive while rebuilding their lives.
Conclusions: The present study offers insight into the experiences of the bereaved spousal caregiver and highlights the need of social support during the bereavement period. All participants expressed loss-oriented and restoration-oriented coping strategies. Also, loneliness is considered a dominant feeling throughout the bereavement period. Social contact can ease these feelings of loneliness through providing either distraction or possibilities to share the burden. This paper emphasized the importance of improving access to healthcare professionals during bereavement.
Objectives: Advance care planning (ACP) typically comprises formal preparations (i.e., living will and/or durable power of attorney for health care) and informal discussions with family members and health care providers. However, some people complete formal documents without discussing them with others. If they become incapacitated, their appointed decision makers may lack guidance on how to interpret or enact their formal wishes. We document the prevalence and correlates of this partial approach to ACP.
Method: Using multinomial logistic regression models and data from a U.S. sample of 4,836 older adults in the 2018 wave of the National Health and Aging Trends Study (NHATS), this brief report evaluated associations between social integration indicators and the odds of completing (a) both discussions and formal plans (two-pronged ACP), (b) discussions only, (c) no ACP, and (d) formal ACP only (reference category). We adjust for demographic and health characteristics established as correlates of ACP.
Results: A minority (15%) of NHATS participants reported formal plans without having discussed them. Indicators of social isolation (e.g., smaller social networks and fewer social activities) increased the odds of engaging in formal planning only compared to two-pronged ACP. Socioeconomic disadvantage and probable dementia reduced the odds of having end-of-life conversations, whether as one’s only preparation or in tandem with formal preparations.
Discussion: Socially isolated persons are especially likely to do formal planning only, which is considered less effective than two-pronged ACP. Health care professionals should recognize that older adults with few kin may require additional support and guidance when doing ACP.
The loss of a significant other often creates emotional distress for family members that can hamper the ability to meet everyday challenges and pursue wellness. The aim of this qualitative study was to understand the challenge of losing a significant other for older adult family members and the approaches identified as most helpful to promote their own well-being after this person dies. Story inquiry method guided the interview process with 15 older adult bereaved family members residing in a continuing care retirement community. Theory-guided content analysis was used for data analysis. Two themes described the challenges: uneasiness that permeates everyday living and precious memories and patterns of disconnect that breed discontent. Appreciating the rhythmic flow of everyday connecting and separating and embracing reality as situated in one’s lifelong journey are the themes that encompass the helpful approaches used by participants. This study provided insights about the benefits of living in this community such as social networking and a possible drawback such as the frequency of death among residents. Future research should continue to investigate social service resources that older adults find most helpful after a significant other dies and the use of reminiscence groups as a form of bereavement support.
BACKGROUND: Since the introduction of the concept of advance care planning (ACP), many studies have been conducted exploring beneficial effects. These studies show a heterogeneity in clinical endpoints, which reflects diversity of goals connected to ACP. This study aims to get insight in the range of underlying goals that comprise the legitimacy of ACP.
METHODS: Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library. Articles on normative aspects of ACP were included, based on title and abstract. Due to the quantity of inclusions, of which many had similar content, purposive sampling was used to select articles for full text document analysis. Analysis stopped once saturation was reached.
RESULTS: In total, 6497 unique articles were found of which 183 were included. Saturation was reached after document analysis of 55 articles (30%); this yielded 141 codes concerning goals of ACP and also 70 codes about objections against ACP, which shed light on the underlying goals of ACP as well. We identified five underlying goals: respecting individual patient autonomy, improving quality of care, strengthening relationships, preparing for end-of-life, reducing overtreatment.
CONCLUSIONS: Five distinctive underlying goals of ACP were identified, each with corresponding objections that need to be considered. Specifying underlying goals of ACP may direct the debate on definitions, methods and preferred outcomes of ACP. This study was funded by the Netherlands Organisation for Health Research and Development, grant 839120002.
OBJECTIVES: To evaluate the influence of art therapy in reducing palliative symptoms, on social availability and on perceptions of aesthetics in hospitalised palliative care patients. The secondary objective was to evaluate its influence on bereaved families.
METHODS: A mixed-method quasi-experimental before and after study comprising a follow-up postal survey of bereaved families. All patients who were keen to have art therapy sessions were eligible. We used patient-reported outcome scales 5 min before and after the session. The Edmonton Symptom Assessment Scale has been used for pain, anxiety, well-being, fatigue and depression. Ten-point visual analogue scales were used for social availability, lack of desire and wishes, and perceptions of aesthetics based on the Beautiful-Well-Good model. A postal survey was sent to bereaved families. Correlations and data mining analyses were performed.
RESULTS: In all, 24 patients were recruited for a total of 53 art therapy sessions analysed. Seven families completed the survey. Art therapy significantly reduced the assessed symptoms and overall symptom distress by 54.4% (p <0.001, d = 1.08). It also decreased the feeling of social unavailability (-59%, d = 0.67) and the lack of desire and wishes (-60%, d=0.86). The analysis of the family questionnaires indicates the positive effects regarding support, artwork and feelings during illness and grief.
CONCLUSION: Our results suggest an overall improvement in the symptoms experienced and social functioning of palliative patients. Based on our findings, we propose a model for the potential mechanism of action of art therapy.
Qu'en est-il des personnes atteintes de la maladie d'Alzheimer, qui s'éloignent lentement du lien social ? L'auteur, sociologue, soutient que ces malades se désinvestissent du monde en réduisant leurs facultés mentales. Comment la famille et les soignants peuvent-ils les accompagner dans ce détachement du monde ? Le proche ou le soignant, qui prend le temps de regarder la personne atteinte de la maladie d'Alzheimer, la reconnaît alors dans son humanité et recrée ainsi du lien social.
Informal caring at the end of life is often a fraught experience that extends well beyond the death of the person receiving care. However, analyses of informal carers' experiences are frequently demarcated relative to death, for example in relation to anticipatory grief (pre-death) or grief in bereavement (post-death). In contrast to this tendency to epistemologically split pre- and post-death experiences, we analyse informal caring across two separate qualitative interviews with 15 informal carers in one metropolitan city in Australia-one before and one after the death of the person for whom they cared. In doing so, we focus on accounts of care across dying and bereavement including: the evolving ambivalence of carers' social relations at the end of life and beyond; dying and death as a challenge to the ideal of authenticity; and, the potential for misrecognition and social estrangement in caring relations at the end of life. We draw on social theory addressing the themes of ambivalence, authenticity and recognition to enhance our understanding of caring as a social practice that occurs across dying and bereavement, rather than as structured primarily by the context of one or the other.
Vieillir fait partie de la vie. Pourtant, les expériences sociales associées à des âges plus avancés sont dévalorisées dans un grand nombre de sociétés contemporaines. Cet article s’appuie sur les travaux d’une équipe de recherche s’intéressant à l’exclusion sociale et aux solidarités en lien avec le vieillissement. Les concepts d’exclusion et d’inclusion sociale sont présentés dans une forme interreliée, dynamique et multidimensionnelle, tentant de dégager les voies d’action concrètes de ces processus afin d’éclaircir leur opérationnalisation et les moyens de les contrer (exclusion) ou de les favoriser (inclusion). L’inclusion dont il est ici question va au-delà de l’intégration sociale et repose sur deux composantes essentielles : la reconnaissance et la redistribution. En effet, une réelle inclusion sociale ne peut s’incarner que lorsqu’on reconnaît les aînés comme ayant une valeur sociale égale à la nôtre, et qu’on leur donne accès aux pouvoirs et aux ressources nécessaires pour que leurs voix soient entendues et prises en compte.
OBJECTIVES: Well-being typically exhibits pronounced deteriorations with approaching death, with sizeable interindividual variations in levels and changes. It is less well understood how psychosocial factors contribute to these individual differences. We examined whether and how social integration is associated with terminal trajectories of well-being, indexed as life satisfaction.
METHOD: Data were drawn from 1,119 deceased Japanese participants of a 15-year longitudinal study (age at death: M = 79.2 years; SD = 7.7 years; 43.1% women). Life satisfaction, structural and functional features of social integration (e.g., frequency of contact with family and nonfamily, and perceived overall support, respectively), socio-demographic characteristics, and physical function were assessed.
RESULTS: Social integration predicted individual differences in terminal decline in life satisfaction, after controlling for age at death, gender, education, and physical function: More diverse social relationships were associated with higher levels of life satisfaction at 1 year before death. Additionally, individuals who exhibited more decline in social participation and perceived less support showed more pronounced decline with increasing proximity of death.
DISCUSSION: This study suggests that social integration plays a protective role in late-life well-being, and that sustaining an active social life and supportive social interactions may help mitigate terminal decline in well-being.
OBJECTIVE: The purpose of this study of post-treatment oral cavity cancer (OCC) patients was to identify factors associated with self-reported overall body image, perceived attractiveness, and dissatisfaction with body appearance.
METHODS: This cross-sectional study recruited patients with OCC from the outpatient radiation department of a single cancer center in northern Taiwan. Demographic and clinical characteristics were recorded, and patients were assessed using the Hospital Anxiety and Depression Scale (HADS), the Liebowitz Social Anxiety Scale (LSAS), the University of Washington Quality of Life scale (UW-QOL), and the Body Image Scale (BIS).
RESULTS: A total of 168 patients were included in this current study, 76 females and 92 males. Negative overall body image was associated with greater degree of depression, greater fear of social interactions, poorer social-emotional function, receipt of surgery, female gender, and greater avoidance of social interaction; these factors explained 49.0% of the variance in this outcome measure. Poor perceived attractiveness was associated with greater depression, greater fear of social interaction, and receipt of surgery; these factors explained 25.4% of the variance in this outcome measure. Dissatisfaction with body appearance was associated with poor social-emotional function, greater fear of social interaction, receipt of reconstruction, advanced cancer stage, and female gender; these factors explained 52.2% of the variance in this outcome measure.
CONCLUSIONS: This study of post-treatment OCC patients indicated that depression and fear of social interaction strongly influenced overall body image, perceived attractiveness, and dissatisfaction with body appearance.
Les entrevues proposées dans les Cahiers visent à donner accès à l'engagement personnel et professionnel de différentes personnes qui, à leur façon, contribuent à l'évolution et à la qualité des soins palliatifs. M. Serge Dumont porte depuis longtemps la préoccupation de l'interaction entre l'individu et son milieu. Sa passion l'a conduit, entre autres, dans les domaines du travail social, de la recherche et de la formation. Par choix, il a fait des soins palliatifs un lieu privilégié de son engagement.
Le bien-être du bénévole dans l'accompagnement comme la persistance de son engagement dépendent d'échanges entre lui et son association. Il est intéressant de mettre en lumière la nature de ces liens et les raisons de son utilité. La réflexion suit une sorte de chronologie qui démarre à la formation initiale, puis aborde les premiers accompagnements, pour explorer enfin les années d'accompagnement.
OBJECTIVES: Volunteers have an important place in palliative care (PC), positively influencing quality of care for seriously ill people and those close to them and providing a link to the community. However, it is not well understood where volunteers fit into PC provision or how to support them adequately. We therefore chose to describe volunteer roles across care settings through the perspective of those closely involved in the care of terminally ill people.
METHODS: A qualitative study was conducted using both focus groups with volunteers, nurses, psychologists and family physicians and individual semistructured interviews with patients and family caregivers. Participants were recruited from hospital, home, day care and live-in services.
RESULTS: 79 people participated in the study. Two volunteer roles were identified. The first was 'being there' for the dying person. Volunteers represent a more approachable face of care, focused on psychological, social and existential care and building relationships. The second was the 'liaison' role. Volunteers occupy a liminal space between the professional and the family domain, through which they notice and communicate patient needs missed by other caregivers. Patient-volunteer matching was a facilitator for role performance; barriers were lack of communication opportunities with professional caregivers and lack of volunteer coordination.
CONCLUSION: Volunteers complement professional caregivers by (1) occupying a unique space between professionals, family and patients and fulfilling a liaison function and (2) being a unique face of care for patients. Healthcare services and policy can support volunteer role performance by ensuring frequent communication opportunities and volunteer coordination.
This study examined how financial strain, worry about having no care-giver and social engagement modify the association between widowhood and depressive symptoms among older adults in China. Using national representative data from older adults in China in 2006, we ran structural equation models and ordinary least square regressions to investigate the mediating and moderating effects of financial strain, worry about having no care-giver and social engagement on the association between widowhood and depressive symptoms. All three variables significantly mediated the association between widowhood and depressive symptoms. Compared to their married counterparts, widowed older adults showed more worry about having no care-giver, increased financial strain and lower social engagement, which were significantly associated with depressive symptoms. Higher level of worry about having no care-giver and lower social engagement significantly exacerbated the adverse effects of widowhood on depressive symptoms in the moderation analyses. Our finding of mediating effects suggests that widowhood is negatively related to psychological wellbeing via financial strain, social engagement and care resources. The results regarding moderating effects suggest that alleviating worry about having no care-giver and increasing social engagement may buffer the deleterious effect of widowhood on psychological wellbeing in later life.
This study explores how Danish students experience returning to school following parental bereavement. Eighteen focus group interviews with 39 participants aged 9 to 17 years were conducted. All participants had experienced the loss of a primary caregiver. Data collection was divided into two phases. In Phase I, 22 participants from four grief groups were interviewed 4 times over the course of a year. During Phase II, confirmatory focus groups were undertaken with the 17 participants. This article explores findings related to the four themes of initial school response, long-term support, challenges within the class, and academic challenges. The study found that (a) students struggle to reconnect with classmates following the return to school and often feel alone, (b) schools fail to have guidelines in place for what they are allowed to do if becoming sad the class, and (c) schools seem to forget their loss as time passes.
The focus in grief theories has been increasingly shifting toward questions of meaning. In this study, we draw on the meaning-reconstruction model of grief for studying the unique case of hard drug users who have experienced a drug-related death. The social context of hard drug use, as well as the death and grief circumstances, is problematic and stigmatized. Grief narratives of 10 respondents were analyzed according to the principles of grounded theory. We identified four main themes: (1) the inhibition of emotion by drugs leading to fragmented grief reactions, (2) social exclusion and notions of disenfranchized grief, (3) the acceptance of death, and (4) meaningfulness in a “biography of losses.” Connecting these results with the literature on meaning, we find that meaning-making is a multidimensional and layered process, where some layers result in meanings made while others do not. Finally, this study emphasizes the importance of social and emotional aspects of grieving, as well as the ambiguity of the notion of successful meaning-making in relation to grief.
Objective: To examine differences in blood pressure response and recovery in a sample of bereaved and non-bereaved youths during an acute stress task conducted 5 years after time of parental death.
Methods: One-hundred and ninety-two (n = 192) bereaved and non-bereaved offspring (ages 11–29) participated in an adaptation of the Trier Social Stress Task (TSST) 5-years after the time of parental death. Blood pressure measurements were collected before, during, and after the laboratory stress protocol. Mixed models for repeated measures were used to analyze the effects of bereavement status and course of psychiatric disorder in the 5-year period after parental death in both offspring and caregivers on blood pressure response; linear regression was used to examine these associations with blood pressure recovery.
Results: Although there were no differences across groups in diastolic (DBP) or systolic blood pressure (SBP) response to stress, bereaved offspring demonstrated less SBP recovery to the TSST as compared to non-bereaved offspring. A significant interaction between bereavement status and race, and a marginally significant interaction between bereavement status and sex indicated poor SBP recovery for parentally bereaved racial/ethnic minority offspring as compared to parentally bereaved Caucasian offspring, and for parentally bereaved males compared to parentally bereaved females.
Conclusions: Parentally bereaved youths demonstrate blood pressure response to social stress tasks similar to that of non-bereaved youths, but parentally bereaved ethnic/racial minority youths and parentally bereaved males evidence a less complete recovery from the effects of stress. The health consequences of poor blood pressure recovery in bereaved youths are discussed.
PURPOSE: Cancer threatens the social well-being of patients and their informal caregivers. Social life is even more profoundly affected in advanced diseases, but research on social consequences of advanced cancer is scarce. This study aims to explore social consequences of advanced cancer as experienced by patients and their informal caregivers.
METHODS: Seven focus groups and seven in-depth semi-structured interviews with patients (n = 18) suffering from advanced cancer and their informal caregivers (n = 15) were conducted. Audiotapes were transcribed verbatim and open coded using a thematic analysis approach.
RESULTS: Social consequences were categorized in three themes: "social engagement," "social identity," and "social network." Regarding social engagement, patients and informal caregivers said that they strive for normality by continuing their life as prior to the diagnosis, but experienced barriers in doing so. Regarding social identity, patients and informal caregivers reported feelings of social isolation. The social network became more transparent, and the value of social relations had increased since the diagnosis. Many experienced positive and negative shifts in the quantity and quality of their social relations.
CONCLUSIONS: Social consequences of advanced cancer are substantial. There appears to be a great risk of social isolation in which responses from social relations play an important role. Empowering patients and informal caregivers to discuss their experienced social consequences is beneficial. Creating awareness among healthcare professionals is essential as they provide social support and anticipate on social problems. Finally, educating social relations regarding the impact of advanced cancer and effective support methods may empower social support systems and reduce feelings of isolation.