Community perspectives on structural barriers to dying well at home in Canada.

OBJECTIVES: To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home. METHODS: To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities. RESULTS: Analysis of stakeholders' insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital. SIGNIFICANCE OF RESULTS: Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers' structural imaginations about what it means to die well at home in Canada.

How initial policy responses to COVID-19 contributed to shaping dying at home preferences and care provision: key informant perspectives from Canada.

OBJECTIVES: In response to COVID-19's first wave, provincial governments rapidly implemented several public health directives, including isolation measures and care facility visitor restrictions, which profoundly affected healthcare delivery at the end of life and dying experiences and perceptions. The objective of this study was to identify implications of early policy changes for dying at home. METHODS: Analysis of interviews with 29 key informants with expertise in the policy and practice context of dying at home and care for those dying at home was conducted as part of a larger mixed-methods study on dying at home in Canada. RESULTS: Initial pandemic policy responses, especially visitor restrictions and limitations to home care services, shaped dying at home in relation to three themes: (1) increasing preferences and demand for, yet constrained system ability to support dying at home; (2) reinforcing and illuminating systemic reliance on and need for family/friend caregivers and community organizations, while constraining their abilities to help people die at home; and (3) illuminating challenges in developing and implementing policy changes during a pandemic, including equity-related implications. CONCLUSION: This study contributes to broader understanding of the multifaceted impacts of COVID-19 policy responses in various areas within Canadian healthcare systems. Implications for healthcare delivery and policy development include (1) recognizing the role of family/friend caregivers and community organizations in end-of-life care, (2) recognizing health inequities at the end of life, and (3) considering possible changes in future end-of-life preferences and public attitudes about dying at home and responsibility for end-of-life care.

Shifts in Homecare Nursing Practices and Their Implications for Families and Clients Receiving Palliative Care at Home.

Homecare nurses provide essential healthcare services at home. Changes in the nature of homecare nursing practice, however, suggest that older and frail homecare clients are less likely to have timely access to needed homecare nursing services as acute management takes priority. This has an impact on people's ability to be cared for and to die at home, a reported priority for many Canadians. This study highlights how health system changes may be constraining homecare nurses' abilities to enact care that is consistent with palliative care principles and philosophies, and calls for consideration of how shifts in homecare nursing practice have implications for families and clients receiving palliative care at home.

Electronic patient-reported outcomes in clinical kidney practice (ePRO Kidney): a process evaluation of educational support for clinicians.

Background: Patient-reported outcomes (PROs) are increasingly mandated in kidney care to incorporate patients' perspectives. Objectives: We assessed whether educational support for clinicians using electronic (e)PROs could enhance person-centered care. Design: A process evaluation, using a mixed methods longitudinal comparative concurrent design was undertaken of educational support to clinicians on routine use of ePROs. In two urban home dialysis clinics in Alberta, Canada, patients completed ePROs. At the implementation site, clinicians were provided with ePROs and clinician-oriented education via voluntary workshops. At the non-implementation site, neither were provided. Person-centered care was measured using the Patient Assessment of Chronic Illness Care-20 (PACIC-20). Methods: Longitudinal structural equation models (SEMs) compared change in overall PACIC scores. The interpretive description approach, using thematic analysis of qualitative data, further evaluated processes of implementation. Results: Data were collected from questionnaires completed by 543 patients, 4 workshops, 15 focus groups, and 37 interviews. There was no overall difference in person-centered care throughout the study, including after delivery of workshops. The longitudinal SEMs revealed substantial individual-level variability in overall PACIC trajectories. However, there was no improvement at the implementation site and no difference between the sites during both the pre- and post-workshop periods. Similar results were obtained for each PACIC domain. Qualitative analysis provided insights into why there was no substantial difference between sites: (1) clinicians wanted to see kidney symptoms, not quality of life, (2) workshops were tailored to clinicians' educational needs, not patients' needs, and (3) variable use of ePRO data by clinicians. Conclusion: Training clinicians on use of ePROs is complex and likely only part of what is required to enhance person-centered care. Registration: NCT03149328. https://clinicaltrials.gov/ct2/show/NCT03149328.

'The beauty and the less beautiful': exploring the meanings of dying at 'home' among community and practitioner representatives and advocates across Canada.

Background: Significant structural and normative pressures privilege the ideal of dying at home in Canada. At the same time, the social complexities and meanings associated with dying in particular locations remain critically unexamined. Objective: The aim of this study is to explore how diverse community members, including health and social care stakeholders, talk about preferences for locations of dying, with a particular focus on meanings of dying at home. Design: Semi-structured virtual interviews were conducted with 24 community and practitioner representatives and advocates across Canada during the Covid-19 pandemic. This included compassionate community advocates, palliative care professionals and volunteers, bereaved carers, and members of queer, rural, and immigrant communities. Participants were asked about their own preferences for location of dying and elaborated on these aspects with regard to their client population or community group. Results: Our analysis illuminates how meanings of dying at home are connected to previous experiences and perceptions of institutional care. As such, participants' perspectives are often framed as a rejection of institutional care. Dying at home also often signals potential for preserving ontological security and relational connection in the face of life-threatening illness. However, participants' expertise simultaneously informs a sense that dying at home is often unattainable. At times, this awareness underpins interpretations of both preferences and choices as contingent on considerations of the nature and type of illness, concerns about impacts on families, and available resources. Conclusion: The ideal of dying at home is nuanced by identity, relational, and structural contexts. Knowledge from this study can inform realistic and practical person-centered planning across care settings. It can also help create more representative public policy and health system quality indicators regarding a 'good death' that do not rely on or perpetuate undeveloped and unrealistic assumptions about dying, home, and family care.

How compassionate communities are implemented and evaluated in practice: a scoping review.

BACKGROUND: Compassionate communities are rooted in a health promotion approach to palliative care, aiming to support solidarity among community members at the end of life. Hundreds of compassionate communities have been developed internationally in recent years. However, it remains unknown how their implementation on the ground aligns with core strategies of health promotion. The aim of this review is to describe the practical implementation and evaluation of compassionate communities. METHODS: We undertook a scoping review of the empirical peer-reviewed literature on compassionate communities. Bibliographic searches in five databases were developed with information specialists. We included studies in English describing health promotion activities applied to end-of-life and palliative care. Qualitative analysis used inductive and deductive strategies based on existing frameworks for categorization of health promotion activities, barriers and facilitators for implementation and evaluation measures. A participatory research approach with community partners was used to design the review and interpret its findings. RESULTS: Sixty-three articles were included for analysis. 74.6% were published after 2011. Health services organizations and providers are most often engaged as compassionate community leaders, with community members mainly engaged as target users. Adaptation to local culture and social context is the most frequently reported barrier for implementation, with support and external factors mostly reported as facilitators. Early stages of compassionate community development are rarely reported in the literature (stakeholder mobilization, needs assessment, priority-setting). Health promotion strategies tend to focus on the development of personal skills, mainly through the use of education and awareness programs. Few activities focused on strengthening community action and building healthy public policies. Evaluation was reported in 30% of articles, 88% of evaluation being analyzed at the individual level, as opposed to community processes and outcomes. CONCLUSIONS: The empirical literature on compassionate communities demonstrates a wide variety of health promotion practices. Much international experience has been developed in education and awareness programs on death and dying. Health promotion strategies based on community strengthening and policies need to be consolidated. Future research should pay attention to community-led initiatives and evaluations that may not be currently reported in the peer-review literature.

Where would Canadians prefer to die? Variation by situational severity, support for family obligations, and age in a national study.

BACKGROUND: Death at home has been identified as a key quality indicator for Canadian health care systems and is often assumed to reflect the wishes of the entire Canadian public. Although research in other countries has begun to question this assumption, there is a dearth of rigorous evidence of a national scope in Canada. This study addresses this gap and extends it by exploring three factors that moderate preferences for setting of death: situational severity (entailing both symptoms and supports), perceptions of family obligation, and respondent age. METHODS: Two thousand five hundred adult respondents from the general population were recruited using online panels between August 2019 and January 2020. The online survey included three vignettes, representing distinct dying scenarios which increased in severity based on symptom management alongside availability of formal and informal support. Following each vignette respondents rated their preference for each setting of death (home, acute/intensive care, palliative care unit, nursing home) for that scenario. They also provided sociodemographic information and completed a measure of beliefs about family obligations for end-of-life care. RESULTS: Home was the clearly preferred setting only for respondents in the mild severity scenario. As the dying scenario worsened, preferences fell for home death and increased for the other options, such that in the severe scenario, most respondents preferred a palliative care or hospice setting. This pattern was particularly distinct among respondents who also were less supportive of family obligation norms, and for adults 65 years of age and older. CONCLUSIONS: Home is not universally the preferred setting for dying. The public, especially older persons and those expressing lower expectations of families in general, express greater preference for palliative care settings in situations where they might have less family or formal supports accompanied by more severe and uncontrolled symptoms. Findings suggest a) the need for public policy and health system quality indicators to reflect the nuances of public preferences, b) the need for adequate investment in hospices and palliative care settings, and c) continuing efforts to ensure that home-based formal services are available to help people manage symptoms and meet their preferences for setting of death.

Knowledge translation resources to support the use of quality of life assessment tools for the care of older adults living at home and their family caregivers.

PURPOSE: To support the use of quality of life (QOL) assessment tools for older adults, we developed knowledge translation (KT) resources tailored for four audiences: (1) older adults and their family caregivers (micro), (2) healthcare providers (micro), (3) healthcare managers and leaders (meso), and (4) government leaders and decision-makers (macro). Our objectives were to (1) describe knowledge gaps and resources and (2) develop corresponding tailored KT resources to support use of QOL assessment tools by each of the micro-, meso-, and macro-audiences. METHODS: Data were collected in two phases through semi-structured interviews/focus groups with the four audiences in Canada. Data were analyzed using qualitative description analysis. KT resources were iteratively refined through formative evaluation. RESULTS: Older adults and family caregivers (N = 12) wanted basic knowledge about what "QOL assessment" meant and how it could improve their care. Healthcare providers (N = 13) needed practical solutions on how to integrate QOL assessment tools in their practice. Healthcare managers and leaders (N = 14) desired information about using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in healthcare programs and quality improvement. Government leaders and decision-makers (N = 11) needed to know how to access, use, and interpret PROM and PREM information for decision-making purposes. Based on these insights and evidence-based sources, we developed KT resources to introduce QOL assessment through 8 infographic brochures, 1 whiteboard animation, 1 live-action video, and a webpage. CONCLUSION: Our study affirms the need to tailor KT resources on QOL assessment for different audiences. Our KT resources are available: www.healthyqol.com/older-adults .

Using Patient- and Family-Reported Outcome and Experience Measures Across Transitions of Care for Frail Older Adults Living at Home: A Meta-Narrative Synthesis.

BACKGROUND AND OBJECTIVES: Our aim was to create a "storyline" that provides empirical explanation of stakeholders' perspectives underlying the use of patient- and family-reported outcome and experience measures to inform continuity across transitions in care for frail older adults and their family caregivers living at home. RESEARCH DESIGN AND METHODS: We conducted a meta-narrative synthesis to explore stakeholder perspectives pertaining to use of patient-reported outcome and experience measures (PROMs and PREMs) across micro (patients, family caregivers, and healthcare providers), meso (organizational managers/executives/programs), and macro (decision-/policy-makers) levels in healthcare. Systematic searches identified 9,942 citations of which 40 were included based on full-text screening. RESULTS: PROMs and PREMS (54 PROMs; 4 PREMs; 1 with PROM and PREM elements; 6 unspecified PROMs) were rarely used to inform continuity across transitions of care and were typically used independently, rarely together (n = 3). Two overarching traditions motivated stakeholders' use. The first significant motivation by diverse stakeholders to use PROMs and PREMs was the desire to restore/support independence and care at home, predominantly at a micro-level. The second motivation to using PROMs and PREMs was to evaluate health services, including cost-effectiveness of programs and hospital discharge (planning); this focus was rarely at a macro-level and more often split between micro- and meso-levels of healthcare. DISCUSSION AND IMPLICATIONS: The motivations underlying stakeholders' use of these tools were distinct, yet synergistic between the goals of person/family-centered care and healthcare system-level goals aimed at efficient use of health services. There is a missed opportunity here for PROMs and PREMs to be used together to inform continuity across transitions of care.

Measuring quality of life in life-threatening illness - content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers.

BACKGROUND: The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers. METHODS: The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care. RESULTS: Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings. CONCLUSIONS: The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.

More comprehensively measuring quality of life in life-threatening illness: the McGill Quality of Life Questionnaire - Expanded.

BACKGROUND: Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) - Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL - Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance. METHODS: Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics. RESULTS: Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033). CONCLUSIONS: MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).

Prolonged grief and the disruption of meaning: Establishing a mediation model.

This study aimed to test the hypothesis that meaning making is a mediating process in the relationship between risk factors for prolonged grief disorder (PGD) and subsequent emergence of PGD symptomatology. A survey design was employed with prospective measurement of PGD. The following variables were assessed 2-12 months postloss among adults across North America and Europe (N = 357): (a) risk factors for PGD (insecure attachment, social support, neuroticism, violent loss, and spousal loss) and (b) meaning made. Meaning made was measured using the Grief and Meaning Reconstruction Inventory (GMRI) as well as using the Integration of Stressful Life Experiences-Short Form (ISLES-SF). At a 7-10-months follow-up (n = 171) symptoms of PGD were assessed. The mean age at the second assessment point was 44.3 years (SD = 16.1) and the majority of the sample identified as female (71.9%). Process analysis was employed to test a series of simple mediation models. When the GMRI was used as a measure of meaning, the indirect effect of each risk factor on PGD symptoms, as mediated by meaning made, was significant (95% CI). When the ISLES-SF was used to measure meaning, the indirect effect of each risk factor with the exception of violent loss was significant (95% CI). The study demonstrates that meaning making serves to mediate the adverse impact of multiple PGD risk factors on the development of PGD symptomatology. Specifically, the study suggests that PGD risk factors exacerbate symptoms of PGD by impeding the meaning-making process. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Rumination moderates the role of meaning in the development of prolonged grief symptomatology.

OBJECTIVE: To address the etiology of prolonged grief disorder (PGD) by examining whether rumination moderates the role of meaning-making in mediating the impact of PGD risk factors. METHOD: A survey assessing PGD risk factors (low social support, insecure attachment, violent loss, neuroticism, and loss of a spouse), meaning, and rumination was administered 2-12 months postloss among adults across North America and Europe (mean age = 44.3, 71.9% female). At a 7-10 months follow-up, symptoms of PGD were assessed (n = 171). RESULTS: When measuring meaning with the Grief and Meaning Reconstruction Inventory, the moderated mediation pathway was significant for each PGD-risk factor. However, when measuring meaning with the Integration of Stressful Life Experiences-Short Form, the pathway was significant for every risk factors except violent loss. CONCLUSIONS: Rumination appears to moderate meaning-making in the development of PGD symptomatology. These findings highlight rumination as a target for intervention with at-risk grievers.

'I'm only dealing with the acute issues': How medical ward 'busyness' constrains care of the dying.

Acute hospital units are a common location of death. Curative characteristics of the acute medical setting make it difficult to provide adequate palliative care; these characteristics include an orientation to life-prolonging treatment, an emphasis on routine or task-oriented care and a lack of priority on emotional engagement with patients. Indeed, research shows that dying patients in acute medical units often experience unmet needs at the end of life, including uncontrolled symptoms (e.g. pain, breathlessness), inadequate emotional support and poor communication. A focused ethnography was conducted on an acute medical ward in Canada to better understand how this curative/life-prolonging care environment shapes the care of dying patients. Fieldwork was conducted over a period of 10 months and included participant-observation and interviews with patients, family members and staff. On the acute medical ward, a 'logic of care' driven by discourses of limited resources and the demanding medical unit created a context of busyness. Staff experienced an overwhelming workload and felt compelled to create priorities, which reflected taken-for-granted values regarding the importance of curative/life-prolonging care over palliative care. This could be seen through the way staff prioritized life-prolonging practices and rationalized inconsistent and less attentive care for dying patients. These values influenced care of the dying through delaying a palliative approach to care, limiting palliative care to those with cancer and providing highly interventive end-of-life care. Awareness of these taken-for-granted values compels a reflective and critical approach to current practice and how to stimulate change.

The needs of siblings of children with a life-threatening illness, part 1: Conceptualization and development of a measure.

OBJECTIVE: The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved in the conceptualization, development, and content validation of an initial version of the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically ill Children]. METHOD: The first phase of the development of this instrument was conducted using qualitative methodology (focus groups: 6 siblings, 8 parents). The second phase consisted of validating the content of a pool of items developed according to the needs identified in the first phase. Some 21 participants (3 psychometricians, 3 researchers, 9 clinicians, and 6 siblings) evaluated each item for relevance and clarity. Finally, during the third phase, the acceptability and administration procedures of the preliminary version of the instrument were assessed qualitatively by five siblings. RESULTS: The first phase led to production of a typology made up of 43 needs in 10 different environments. The second phase allowed for selection of the items that were clearest and most relevant, based on expert opinion. This procedure gave rise to a first version of the IBesFEMS, which consisted of 48 items. SIGNIFICANCE OF RESULTS: The IBesFEMS appears to be a promising tool for specifically assessing the needs of the adolescent siblings of seriously ill children.

Understanding How Bereaved Parents Cope With Their Grief to Inform the Services Provided to Them.

Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing follow-up and support services offered to bereaved parents. Our findings situated parents' individual experiences of coping within the social and institutional contexts in which they grieved. In the first year after the death of their child, parents regulated their intense feelings of grief through loss-oriented, restoration-oriented, and/or meaning reconstruction strategies. Often, parents' relationships with others and many of the bereavement follow-up and support services helped them in this regard. This article also explores how the results may aid service providers in accompanying parents in a way that optimizes outcomes for these parents.

Prolonged grief symptomatology following violent loss: the mediating role of meaning.

Background: Prolonged Grief Disorder (PGD) is over-represented among those who have lost loved ones to violent causes. To tailor PGD interventions for this vulnerable population it is critical to examine the aetiology of PGD specifically in the context of violent death bereavement. Previous studies have suggested that violent loss increases symptoms of PGD by hindering the mourner's ability to make meaning of the death or its aftermath. However, these studies have relied on cross sectional data that preclude genuine prediction and have not differentiated among specific themes of meaning. Objective: This study aimed to identify specific themes of meaning that mediate the detrimental impact of violent loss on subsequent emergence of PGD symptomatology among the violently bereft. Method: A longitudinal, prospective design (N = 171) was used to assess violent loss and themes of meaning an average of six months post-loss allowing for prediction of PGD symptoms an average of eight months later. Results: Violent loss had a significant indirect effect on PGD symptomatology when meaning themes focusing on sense of peace and continuing bonds served as mediators. Conclusions: This study demonstrates the mediating role that specific meaning themes play in the development of PGD symptomatology following violent loss. These findings highlight the potential benefits of applying a meaning-based intervention approach with the violently bereft.

Antecedentes: El Trastorno de Duelo Prolongado (PGD en su sigla en inglés) está sobrerrepresentado entre aquellos que han perdido a sus seres queridos por causas violentas. Para adaptar las intervenciones de PGD para esta población vulnerable, es fundamental examinar la etiología del PGD, específicamente en el contexto de la experiencia de pérdida (bereavement) violenta. Estudios previos han sugerido que la pérdida violenta aumenta los síntomas del PGD al obstaculizar la capacidad del doliente (mourner) de dar sentido a la muerte o sus consecuencias. Sin embargo, estos estudios se han basado en datos transversales que impiden una predicción genuina y no han diferenciado entre temas específicos de significado. Objetivo: Este estudio tuvo como objetivo identificar los temas específicos de significado que median el impacto perjudicial de la pérdida violenta en la aparición posterior de la sintomatología PGD entre los dolientes. Método: Se utilizó un diseño prospectivo longitudinal (N = 171) para evaluar la pérdida violenta y los temas de significado, aproximadamente 6 meses después de la pérdida, lo que permitió la predicción de los síntomas de PGD en un promedio de 8 meses después. Resultados: La pérdida violenta tuvo un efecto indirecto significativo en la sintomatología del PGD cuando los temas de significado que se centran en la sensación de paz y continuidad de los vínculos/lazos sirvieron como mediadores. Conclusiones: El estudio demuestra el rol mediador que desempeñan los temas de específicos de significado en el desarrollo de la sintomatología del PGD después de la pérdida violenta. Estos hallazgos resaltan los beneficios potenciales de aplicar un enfoque de intervención basado en el significado con los dolientes.

The needs of siblings of children with a life-threatening illness, part 2: Psychometric validation of the IBesFEMS.

OBJECTIVE: Life-threatening illnesses in children have a significant impact on the lives of their brothers and sisters. Consequently, special attention must be paid to the specific needs of these siblings to help them cope with their situations. To address this issue, we developed an inventory of the needs of the adolescent siblings of severely ill children, the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically Ill Children]. The present article describes a preliminary validation study of this new instrument. METHOD: In a prospective cohort study, the 48-item instrument was administered via a website or paper to 58 siblings. RESULTS: Our study revealed that the measure has an estimated internal consistency of 0.96 and a temporal stability intraclass correlation coefficient (ICC) of 0.86 (p < 0.01). Its convergence validity is also satisfactory. SIGNIFICANCE OF RESULTS: Our findings suggest that the IBesFEMS is highly relevant for pediatric palliative care clinicians and researchers. Future studies should investigate its factorial structure and predictive validities.

Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire-Revised.

BACKGROUND: The McGill Quality of Life Questionnaire has been widely used with people with life-threatening illnesses without modification since its publication in 1996. With use, areas for improvement have emerged; therefore, various minor modifications were tested over time. AIM: To revise the McGill Quality of Life Questionnaire (McGill Quality of Life Questionnaire-Revised) while maintaining or improving its psychometric properties and length, keeping it as close as possible to the McGill Quality of Life Questionnaire to enable reasonable comparison with existing McGill Quality of Life Questionnaire literature. DESIGN: Data sets from eight studies were used (four studies originally used to develop the McGill Quality of Life Questionnaire, two to develop new McGill Quality of Life Questionnaire versions, and two with unrelated purposes). The McGill Quality of Life Questionnaire-Revised was developed using analyses of measurement invariance, confirmatory factor analysis, and calculation of correlations with the McGill Quality of Life Questionnaire's global quality of life item. SETTING/PARTICIPANTS: Data were from 1702 people with life-threatening illnesses recruited from acute and palliative care units, palliative home care services, and oncology and HIV/AIDS outpatient clinics. RESULTS: The McGill Quality of Life Questionnaire-Revised consists of 14 items (plus the global quality of life item). A new Physical subscale was created combining physical symptoms and physical well-being and a new item on physical functioning. The Existential subscale was reduced to four items. The revised Support subscale, renamed Social, focuses more on relationships. The Psychological subscale remains unchanged. Confirmatory factor analysis results provide support for the measurement structure of the McGill Quality of Life Questionnaire-Revised. The overall scale has good internal consistency reliability ( α = 0.94). CONCLUSION: The McGill Quality of Life Questionnaire-Revised improves on and can replace the McGill Quality of Life Questionnaire since it contains improved wording, a somewhat expanded repertoire of concepts with fewer items, and a single subscale for the physical domain, while retaining good psychometric properties.

Family Caregiving in Japan: The Influence of Cultural Constructs in the Care of Adults With Cancer.

Caring culture is a concept embodying the perceptions and caring practices of caregivers, acknowledging the unique role of cultural beliefs in shaping behavior. A qualitative descriptive study with 13 caregivers of adult family members with a cancer diagnosis in Japan was conducted to gain insight into perceptions and experiences surrounding caregiving. Several major categories were identified, representing rarely reported cultural constructs of high cultural value for the Japanese: On-repayment for what the patient has given, Caregiving as performing a socially expected role, Enryo/meiwaku-restraint in asking for help, Family decision making reflecting strong bonds, Omoiyari-empathizing with the patient's feelings, and Inori-praying to myriad gods and ancestors. The Japanese cultural construct of ie (the strong relationship to family lineage and spiritual connection to past and future generations) is helpful in understanding these categories. Invisible yet powerful cultural constructs permeated caregiving practices. Insights from Japanese cultural concepts and beliefs may foster sensitivity and individualized care in diverse settings, cultures, and societies.