BACKGROUND/OBJECTIVES: To explore the opinion of the Dutch general public and of physicians regarding euthanasia in patients with advanced dementia.
DESIGN: A cross-sectional survey.
SETTING: The Netherlands.
PARTICIPANTS: Random samples of 1,965 citizens (response = 1,965/2,641 [75%]) and 1,147 physicians (response = 1,147/2,232 [51%]).
MEASUREMENTS: The general public was asked to what extent they agreed with the statement "I think that people with dementia should be eligible for euthanasia, even if they no longer understand what is happening (if they have previously asked for it)." Physicians were asked whether they were of the opinion that performing euthanasia is conceivable in patients with advanced dementia, on the basis of a written advance directive, in the absence of severe comorbidities. Multivariable logistic regression was performed to identify factors associated with the acceptance of euthanasia.
RESULTS: A total of 60% of the general public agreed that people with advanced dementia should be eligible for euthanasia. Factors associated with a positive attitude toward euthanasia were being female, age between 40 and 69 years, and higher educational level. Considering religion important was associated with lower acceptance. The percentage of physicians who considered it acceptable to perform euthanasia in people with advanced dementia was 24% for general practitioners, 23% for clinical specialists, and 8% for nursing home physicians. Having ever performed euthanasia before was positively associated with physicians considering euthanasia conceivable. Being female, having religious beliefs, and being a nursing home physician were negatively associated with regarding performing euthanasia as conceivable.
CONCLUSION: There is a discrepancy between public acceptance of euthanasia in patients with advanced dementia and physicians' conceivability of performing euthanasia in these patients. This discrepancy may cause tensions in daily practice because patients' and families' expectations may not be met. It urges patients, families, and physicians to discuss mutual expectations in these complex situations in a comprehensive and timely manner.
BACKGROUND: As the global population ages, palliative care is ever more essential to provide care for patients with incurable chronic conditions. However, in many countries, doctors are not prepared to care for dying patients. Palliative care education should be an urgent concern for all medical schools all around the world, including Latin America and Brazil. Advances in palliative care education require robust assessment tools for constant evaluation and improvement of educational programmes. Bandura's social cognitive theory proposes that active learning processes are mediated by self-efficacy and associated outcome expectancies, both crucial elements of developing new behaviour. The Self-Efficacy in Palliative Care (SEPC) and Thanatophobia Scales were developed using Bandura's theory to assess the outcomes of palliative care training.
OBJECTIVES: We aimed to translate and validate these scales for Brazilian Portuguese to generate data on how well doctors are being prepared to meet the needs of their patients.
DESIGN: Cross-sectional study.
SETTING: One Brazilian medical school.
PARTICIPANTS: Third-year medical students.
METHODS: The authors translated the scales following the European Organisation for Research and Treatment of Cancer's recommendations and examined their psychometric properties using data collected from a sample of 111 students in a Brazilian medical school in 2017.
RESULTS: The Brazilian versions of SEPC and Thanatophobia Scales showed good psychometric properties, including confirmatory factor analysis, replicating the original factors (factor range: 0.51-0.90), and acceptable values of reliability (Cronbach's alpha: 0.82-0.97 and composite reliability: 0.82-0.96). Additionally, the Brazilian versions of the scales showed concurrent validity, demonstrated through a significant negative correlation.
CONCLUSIONS: The Brazilian version of the scales may be used to assess the impact of current undergraduate training and identify areas for improvement within palliative care educational programmes. The data generated allow Brazilian researchers to join international conversations on this topic and educators to develop tailored pedagogical approaches.
Background and Aims: Palliative care is an important area of intervention in neurodegenerative diseases. The aim of this study is to understand the relationship between Palliative Care Needs and Caregiver Burden among persons diagnosed with neurodegenerative diseases.
Methods: A cross-sectional study design was adopted to explore the research problem. A prospective sample of 120 participants (60 Patient Caregiver dyads) of Motor Neurone Disease (MND) and Parkinson's disease (PD) were recruited for the study based on inclusion and exclusion criteria from a quaternary referral care centre for neurology in south India. Patients seeking care were recruited for the study consecutively. Palliative care outcome scale and Zarit Burden Interview scale were administered to understand the relationship.
Results: It was found that Palliative care outcomes score was positively correlated with caregiver burden (r = 0.597), showing that there is a bi-directional relationship between palliative care needs and caregiver burden.
Conclusion: Irrespective of the differences in illness characteristics, the study found that palliative care needs are high among chronic neurological conditions which requires a noncategorical psychosocial approach in ensuring care.
Purpose: Patients' views on quality are important to improve person-centered palliative care. There is a lack of short, validated instruments incorporating patients' perspectives of the multidisciplinary palliative care services. The aim of this study was to develop a short form of the instrument Quality from the Patient's Perspective for Palliative Care (QPP-PC) and to describe and compare patients' perceptions of the subjective importance (SI) of care aspects and their perceptions of care received (PR).
Methods: A cross-sectional study was conducted in Norway including 128 patients (67% response rate) in four palliative care contexts. The QPP-PC, based on a person-centered theoretical framework, incorporating the multidisciplinary palliative care, comprises 4 dimensions; medical-technical competence, physical-technical conditions, identity-oriented approach and sociocultural atmosphere, 12 factors (49 items) and 3 single items. The instrument measures SI and PR. Development of the short form of the QPP-PC was inspired by previously published methodological guidelines. Descriptive statistics, paired t-tests, confirmatory factor analysis and Cronbach's a were used.
Results: The short form of QPP-PC consists of 4 dimensions, 20 items and 4 single items. Psychometric evaluation showed a root-mean-square error of approximation (RMSEA) value of 0.109 (SI). Cronbach's a values ranged between 0.64 and 0.85 for most dimensions on SI scales. Scores on SI and PR scales were mostly high. Significantly higher scores for SI than PR were present for the identity-oriented approach dimension, especially on items about information.
Conclusion: RMSEA value was slightly above the recommended level. Cronbach's a was acceptable for most dimensions. The short form of QPP-PC shows promising results and may be used with caution as an indicator of person-centered patient-reported experience measures evaluating the multidisciplinary palliative care for patients in a late palliative phase. However, the short version of QPP-PC needs to be further validated using new samples of patients.
BACKGROUND: Critical care nurses routinely care for dying patients. Research on obstacles in providing end-of-life care has been conducted for more than 20 years, but change in such obstacles over time has not been examined.
OBJECTIVE: To determine whether the magnitude scores of obstacles and helpful behaviors regarding end-of-life care have changed over time.
METHODS: In this cross-sectional survey study, questionnaires were sent to 2000 randomly selected members of the American Association of Critical-Care Nurses. Obstacle and helpful behavior items were analyzed using mean magnitude scores. Current data were compared with data gathered in 1999.
RESULTS: Of the 2000 questionnaires mailed, 509 usable responses were received. Six obstacle magnitude scores increased significantly over time, of which 4 were related to family issues (not accepting the poor prognosis, intrafamily fighting, overriding the patient's end-of-life wishes, and not understanding the meaning of the term lifesaving measures). Two were related to nurse issues. Seven obstacles decreased in magnitude, including poor design of units, overly restrictive visiting hours, and physicians avoiding conversations with families. Four helpful behavior magnitude scores increased significantly over time, including physician agreement on patient care and family access to the patient. Three helpful behavior items decreased in magnitude, including intensive care unit design.
CONCLUSIONS: The same end-of-life care obstacles that were reported in 1999 are still present. Obstacles related to family behaviors increased significantly, whereas obstacles related to intensive care unit environment or physician behaviors decreased significantly. These results indicate a need for better end-of-life education for families and health care providers.
CONTEXT: Palliative radiotherapy is effective in the management of symptoms resulting from advanced cancer. However, it remains underutilised. In developed countries, many factors have been linked to this phenomenon but data in developing and low income countries, particularly in Latin America, are lacking.
OBJECTIVES: To conduct a cross-sectional survey to explore palliative care physicians' knowledge of palliative radiotherapy and to investigate possible factors that limit patient referral.
METHODS: Cross-sectional survey. An online questionnaire was sent to palliative care physicians (n=170) registered in the Chilean Medical Society's directory of Palliative Care.
RESULTS: The overall response rate was 58.8%. Nearly all respondents (98%) considered radiotherapy to be a useful treatment. Less than half the respondents (43%) had good knowledge of palliative radiotherapy. Knowledge was correlated with self-reported knowledge (p=0.015), discussing cases with radiation oncology (p=0.001) and having attended educational events on palliative radiotherapy (p=0.001). Patient reluctance, poor performance status and family reluctance were identified as major barriers to the use of palliative radiotherapy. Physicians from cities other than the capital were more likely to be concerned about barriers such as distance to radiotherapy facilities (p=0.01), the duration of the referral process (p=0.01) and the lack of a radiation oncologist available for discussing cases (p=0.01).
CONCLUSIONS: Several barriers affect referral to palliative radiotherapy. Some barriers seem to be more significant for physicians practicing in cities far from cancer centres. Physicians` knowledge is less than optimal and has been identified as a barrier to referral. Educational interventions and broadening the availability of cancer treatment resources are needed in order to improve the referral process.
Background: Although advance care planning discussions are increasingly accepted worldwide, their ideal timing is uncertain and cultural factors may pertain.
Aim: To evaluate timing and factors affecting initiation of advance care planning discussions for adult patients in Japan and Taiwan.
Design: Mixed-methods questionnaire survey to quantitatively determine percentages of patients willing to initiate advance care planning discussions at four stages of illness trajectory ranging from healthy to undeniably ill, and to identify qualitative perceptions underlying preferred timing.
Setting/participants: Patients aged 40–75 years visiting outpatient departments at four Japanese and two Taiwanese hospitals were randomly recruited.
Results: Overall (of 700 respondents), 72% (of 365) in Japan and 84% (of 335) in Taiwan (p < 0.001) accepted discussion before illness. In Japan, factors associated with willingness before illness were younger age and rejection of life-sustaining treatments; in Taiwan, older age, stronger social support, and rejection of life-sustaining treatments. Four main categories of attitudes were extracted: the most common welcomed discussion as a wise precaution, responses in this first category outnumbered preference for postponement of discussion until imminent end of life, acceptance of the universal inevitability of death, and preference for discussion at healthcare providers’ initiative.
Conclusion: The majority of patients are willing to begin discussion before their health is severely compromised; about one out of five patients are unwilling to begin until clearly facing death. To promote advance care planning, healthcare providers must be mindful of patients’ preferences and factors associated with acceptance and reluctance to initiate advance care planning.
Deaths in long-term care (LTC) facilities in Canada have increased over the years,1,2 yet the link between exposure to deaths and dying and staff well-being has rarely been investigated. In this study, we examined predictors of staff burnout, focusing specifically on exposure to deaths and dying in LTC.
Background: An important concern of healthcare professionals when exploring the wish to hasten death with patients is the risk of causing them some type of distress.
Aim: To assess the opinion of hospitalized patients with advanced cancer about the proactive assessment of the wish to hasten death.
Design: Descriptive, cross-sectional study.
Setting/participants: We assessed 193 advanced cancer patients admitted to an oncology ward for the wish to hasten death using a semi-structured clinical interview. After the assessment the participants were surveyed to determine whether they found the interview upsetting and, if so to what extent, and also their opinion regarding the assessment’s importance.
Results: The wish to hasten death was reported by 46 (23.8%) patients. The majority of patients (94.8%) did not find talking about the wish to hasten death to be upsetting, regardless of whether they presented it or not. The majority of patients (79.3%) considered that it was either quite or extremely important for the clinician to proactively assess the wish to hasten death and discuss this topic, regardless of whether they experienced it.
Conclusions: In this study, most of the advanced cancer patients did not find the assessment of wish to hasten death to be upsetting, and a substantial proportion of patients in this study believe that it is important to routinely evaluate it in this setting. These findings suggest that healthcare professionals can explore the wish to hasten death proactively in routine clinical practice without fear of upsetting patients.
In Sweden, patients in early palliative stages of illness are cared for in primary care and often offered home care. Many are older and at risk for malnutrition, but little is known about their symptom burden and nutritional problems. This cross-sectional study divided older patients in home care into those with and without risk for malnutrition and compared symptom burden in the 2 groups. Participants were patients in Stockholm County (n = 121) in early palliative stages of disease cared for at home by primary care professionals from 10 health-care centers. The Mini Nutritional Assessment (MNA) was used to identify risk for malnutrition. Symptoms and/or nutritional status in patients with and without risk were assessed with the Functional Assessment of Anorexia/Cachexia Therapy (FAACT), Patient-Generated Subjective Global Assessment Short Form (PG-SGA), and Edmonton Symptom Assessment System (ESAS). Forty-two percent of the patients were at risk for malnutrition (MNA). Appetite (P = .012), tiredness (P = .003), and anxiety (P = .008) were worse in these patients than in those without risk (ESAS; significance level, P = .015). Patients at risk were also more concerned about how thin they looked (P = .006), agreed more strongly that their family or friends were pressuring them to eat (P = .000; FAACT; significance level, P = .029), had a higher symptom burden (P = .005), had lower physical activity (P = .000), and more lost weight over time (P = .032; PG-SGA; significance level, P = .040). This study adds a more detailed picture of the symptom burden in older patients at risk for malnutrition. Such information is needed to identify risk for malnutrition earlier and improve patients’ health.
The aim of this cross-sectional study was to examine the association of supernatural beliefs and sense of coherence with death anxiety and death depression in a Romanian sample of cancer patients. We found support for the terror management theory worldview defence hypothesis postulating the presence of a curvilinear relation between death anxiety and supernatural beliefs among cancer patients. Results conformed to an inverted U-shape quadratic regression, indicating that cancer patients who scored moderately on supernatural beliefs were afraid of death the most, while death anxiety was lowest for the extreme atheists and extreme believers in supernatural entities.
Background: The term "palliative care" (PC) has often been found to have a negative connotation leading some to suggest rebranding and some services to change their name. Perceptions of the PC community about the term remain largely unexplored.
Objective: To explore how PC researchers/academics perceive the term is the objective of this study.
Design: This is a cross-sectional survey of attendees to the 10th World Research Congress of the EAPC. The questionnaire covered areas of academic activity, including the use of the term. We analyzed data through descriptive and nonparametric statistics and open responses through content analysis.
Participants: Academics and researchers in PC were the participants in this study.
Results: Of 318 respondents, the majority were women (65%), physicians (48%), and had a postgraduate degree (90%). For 40%, the term hindered the positioning of PC, 28% worried about using the term, and 55% did not discuss these difficulties. We found significant differences between responses and several demographics (e.g., younger age and higher likelihood of worrying about the term). Through open responses, we identified that the term is widely in use, and that its limitations are seen as a cultural by-product, and not as something that a name change would solve.
Conclusions: Senior PC academics, researchers, and clinicians have an onus to ensure that colleagues with limited PC experience have the opportunity to discuss and explore the impact of the term on the practice of research. Regarding the term itself, the community's views are conclusive: although using the term will remain a difficult task, the field's identity is in the name.
Objective/Background: About 15% of grievers experience complicated grief. We determined cross-sectional and longitudinal relations of grief and complicated grief with sleep duration and quality in the general population of elderly adults.
Participants: We included 5,421 men and women from the prospective population-based Rotterdam Study.
Methods: The Inventory of Complicated Grief was used to define grief and complicated grief. We assessed sleep with the Pittsburgh Sleep Quality Index.
Results: After 6 years, 3,511 (80% of survivors) underwent the follow-up interview. Complicated grief was cross-sectionally associated with shorter sleep duration and lower sleep quality. These associations were explained by the presence of depressive symptoms. The prospective analyses showed that sleep duration and sleep quality did not decline further during follow-up of persons who experienced grief or complicated grief.
Conclusion: In community-dwelling, middle-aged and older adults, persons with normal and complicated grief had both a shorter sleep duration and a lower sleep quality, mainly explained by depressive symptoms. However, prospective analyses showed that sleep quality and sleep duration do not decline further in persons with normal grief and complicated grief.
Termination of pregnancy after diagnosis of fetal anomaly (TOPFA) is a contested issue and stigma may negatively impact affected women's psychological reactions. This study examined the influence of perceived and internalized stigma on women's long-term adjustment to a TOPFA. One hundred forty-eight women whose TOPFA dated back 1 to 7 years responded to self-report questionnaires. The associations between perceived stigma at the time of the TOPFA, current internalized stigma and symptoms of grief, trauma and depression were modeled using multiple linear regression. The proportion of participants reporting scores above the cutoffs on the respective scale was 17.6% for grief, 18.9% for posttraumatic stress, and 10.8% for depression. After controlling for time since the TOPFA, pre-TOPFA mental health and obstetric variables, higher levels of current internalized stigma were related to higher levels of grief, trauma, and depression. Mediation analyses suggested that the effect of perceived stigma at the time of the TOPFA on symptoms of grief and trauma was mediated by current internalized stigma, but the cross-sectional design limited causal interpretation of results. Internalized stigma is associated with long-term psychological distress following a TOPFA. Perceived stigma at the time of the TOPFA may contribute to increased trauma and grief symptomatology, but results need to be validated in longitudinal studies. Health care providers and public initiatives should aim at reducing stigma among affected women.
OBJECTIVE: To examine perceptions and experiences regarding providing spiritual care at the end of life of elderly care physicians practising in nursing homes in the Netherlands, and factors associated with spiritual care provision.
METHODS: A cross-sectional survey was sent to a representative sample of 642 elderly care physicians requesting information about their last patient who died and the spiritual care they provided. We compared their general perception of spiritual care with spiritual and other items abstracted from the literature and variables associated with the physicians' provision of spiritual care. Self-reported reasons for providing spiritual care were analysed with qualitative content analysis.
RESULTS: The response rate was 47.2%. Almost half (48.4%) provided spiritual end-of-life care to the last resident they cared for. Half (51.8%) identified all 15 spiritual items, but 95.4% also included psychosocial items in their perception of spirituality and 49.1% included other items. Physicians who included more non-spiritual items reported more often that they provided spiritual care, as did more religious physicians and those with additional training in palliative care. Reasons for providing spiritual care included a request by the resident or the relatives, resident's religiousness, fear of dying and involvement of a healthcare chaplain.
CONCLUSION: Most physicians perceived spirituality as a broad concept and this increased self-reported spiritual caregiving. Religious physicians and those trained in palliative care may experience fewer barriers to providing spiritual care. Additional training in reflecting upon the physician's own perception of spirituality and training in multidisciplinary spiritual caregiving may contribute to the quality of end-of-life care for nursing home residents.
OBJECTIVE: To explore health care providers' perceptions of the provision of palliative care in the Qikiqtaaluk (formerly known as Baffin) region of Nunavut.
DESIGN: An exploratory, qualitative, cross-sectional design using in-depth, semistructured interviews.
SETTING: Qikiqtaaluk region of Nunavut.
PARTICIPANTS: Seven physicians and 6 registered nurses who worked in Iqaluit or other northern Inuit communities in the Qikiqtaaluk region of Nunavut.
METHODS: Thirteen health care providers participated in in-person or telephone semistructured interviews, which were audiorecorded and transcribed verbatim.
MAIN FINDINGS: Interviews with the participating health care providers in the Qikiqtaaluk region of Nunavut revealed 5 complex and interwoven themes that influence the provision of comprehensive, culturally competent palliative care services to Indigenous patients: respecting Inuit culture, end-of-life care planning, and the role of family; recognizing the importance of the northern community (sense of home); being aware of the limited health care resources; recognizing the critical role of medical interpreters; and improving the quality of palliative care programs and resources, as well as health care provider training in palliative care and Inuit end-of-life care.
CONCLUSION: Health care providers in the Qikiqtaaluk region of Nunavut have identified several important themes that influence the provision of culturally sensitive and comprehensive palliative care, most notably the need to develop palliative care resources and programs. It is hoped that the results of this study can be used to help guide palliative care strategies including program development and educational initiatives for health care providers. These initiatives can help build community capacity within a currently underserviced population and improve end-of-life care services available to Nunavut patients and their families. Further studies are required to determine the perspectives of medical interpreters, as well as palliative care patients and their families.
Cancer pain is an unrelenting symptom with the potential to alter the quality of life of patients. To adequately manage pain, nurses caring for cancer patients need to fully understand each patient's pain experience. The purpose of this study was to identify the intensity, distress, frequency, or constancy of pain in patients treated for cancer or cancer symptoms and to better understand patient barriers to pain management. This cross-sectional study included patients (N = 105) treated for cancer or cancer symptoms at 2 outpatient medical centers. Assessments included the Pain Barriers Scale, the Cancer Symptom Scale, and the Multidimensional QOL Scale–Cancer. Descriptive statistics and Spearman correlations were used to analyze the data. Sixty-nine percent of patients reported present pain of moderate to severe intensity that caused distress, was frequent/constant, or interfered with their lives. Patients with the greatest pain distress reported the greatest intensity of pain (r = 0.77) and the greatest interference (r = 0.78) with daily lives. Cancer pain was associated with significant distress and interference with life activities and occurred frequently or constantly for many study patients.
Importance: Despite its spread in much of the United States and increased international interest, the Physician Orders for Life-Sustaining Treatment (POLST) paradigm still lacks supporting evidence. The interrater reliability of the POLST form to translate patients' values and preferences into medical orders for care at the end of life remains to be studied.
Objective: To assess the interrater reliability of the medical orders documented in POLST forms.
Design, Setting, and Participants: This cross-sectional study was conducted in a public university hospital in southeastern Brazil. Two independent researchers interviewed the same patients or decision-making surrogates (n = 64) during a single episode of hospitalization within a time frame of 1 to 7 days. Eligible participants were hospitalized adults aged 21 years or older who were expected to remain hospitalized for at least 4 days and whose attending physician responded no to the question, Would I be surprised if this patient died in the next year? Data collection occurred between November 1, 2015, and September 20, 2016, and first data analyses were performed on October 3, 2016.
Main Outcomes and Measures: Interrater reliability as measured by k statistics.
Results: Of the 64 participants interviewed in the study, 53 (83%) were patients and 11 (17%) were surrogates. Patients' mean (SD) age was 64 (14) years, and 35 patients (55%) and 8 surrogates (73%) were women. Overall, in 5 cases (8%), disagreement in at least 1 medical order for life-sustaining treatment was found in the POLST form, changing from the first interview to the second interview. The k statistic for cardiopulmonary resuscitation was 0.92 (95% CI, 0.80-1.00); for level of medical intervention, 0.89 (95% CI, 0.76-1.00); and for artificially administered nutrition, 0.92 (95% CI, 0.83-1.00).
Conclusions and Relevance: The high interrater reliability of the medical orders in POLST forms appears to offer further support for this advance care planning paradigm; in addition, the finding that this interrater reliability was not 100% underscores the need to ensure that patients or their surrogates have decision-making capacity and to confirm that the content of POLST forms accurately reflects patients' current treatment preferences.
OBJECTIVE: To investigate whether less invasive methods of autopsy would be acceptable to bereaved parents and likely to increase uptake.
DESIGN: Mixed methods study.
SETTING: Bereaved parents recruited prospectively across seven hospitals in England and retrospectively through four parent support organisations.
SAMPLE: Eight hundred and fifty-nine surveys and 20 interviews with bereaved parents.
METHODS: Cross-sectional survey and qualitative semi-structured telephone interviews.
MAIN OUTCOME MEASURES: Likely uptake, preferences, factors impacting decision-making, views on different autopsy methods.
RESULTS: Overall, 90.5% of participants indicated that they would consent to some form of less invasive autopsy [either minimally invasive autopsy (MIA), non-invasive autopsy (NIA) or both]; 53.8% would consent to standard autopsy, 74.3% to MIA and 77.3% to NIA. Regarding parental preferences, 45.5% preferred MIA, 30.8% preferred NIA and 14.3% preferred standard autopsy. Participants who indicated they would decline standard autopsy but would consent to a less invasive option were significantly more likely to have a lower educational level (odds ratio 0.49; 95% CI 0.35-0.70; P = 0.000062). Qualitative findings suggest that parents value NIA because of the lack of any incision and MIA is considered a good compromise as it enables tissue sampling while easing the parental burden associated with consenting to standard autopsy.
CONCLUSION: Less invasive methods of autopsy are acceptable alternatives for bereaved parents, and if offered, are likely to increase uptake and improve parental experience. Further health economic, validation and implementation studies are now required to assess the viability of offering these in routine widespread clinical care.
Objectif : Evaluer l'expérience et l'adaptation de la fratrie endeuillée 7 à 15 ans après la mort d'un frère ou d'une soeur et l'impact du fonctionnement familial sur le deuil des survivants.
Méthodologie : Cette étude transversale descriptive incluait des participants âgés de 14 à 22 ans ayant vécu entre 2 et 18 ans la mort d'un membre de leur fratrie, entre 2001 et 2009. L'intensité du deuil, la présence et la sévérité des symptômes dépressifs, le bien-être, l'estime de soi, les habitudes de consommation ainsi que la scolarité des participants ont été évalués par des questionnaires autoadministrés, standardisés et validés. L'aspect comportemental de l'enfant endeuillé ainsi que le fonctionnement familial étaient évalués à la fois par un parent et le participant.
Résultats : Quatorze familles ont participé à l'étude. Neuf jeunes présentaient un deuil prolongé. Six participants ont obtenu, respectivement, des résultats correspondant à des problèmes de stress importants et à une faible estime personnelle. Aucun problème de dépression, de trouble de comportement ou de consommation n'a été rapporté. Les participants ayant un deuil prolongé étaient membres de familles où les caractéristiques fonctionnelles étaient différentes de celles ayant un deuil absent au niveau de la rigidité (22.0, écart interquartile (EIQ) [19.0-24.0] vs 16.0, EIQ [12.0-16.0] ; p=0.01) et de l'enchevêtrement (15.0, EIQ [12.0-17.0] vs 11.0, EIQ [7.0-13.0] ; p=0.045).
Conclusion : Le deuil prolongé, les problèmes d'anxiété et la faible estime de soi caractérisent la majorité de nos participants. Certaines caractéristiques fonctionnelles familiales, telles la rigidité et l'enchevêtrement, sont associées au deuil prolongé de la fratrie.