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Recommendations for research on suicide loss - a commentary

NEIMEYER, Robert A. ; CEREL, Julie ; MAPLE, Myfanwy
DEATH STUDIES, 12/2017, vol.41, n°9, p. 673-679

Thème : Deuil et travail du deuil. Cote : 00.07DEA

PSYCHOLOGIE ; ADULTE ; DEUIL ; DEVELOPPEMENT HUMAIN ; PROGRAMME RECHERCHE ; RECOMMANDATION ; SUICIDE ; ETATS-UNIS

As detailed in the lead article in this Special Issue, the Survivors of Suicide Loss Task Force of the National Action Alliance for Suicide Prevention in the United States has recently worked to formulate national guidelines to mitigate the harmful aftereffects of suicide in social and family systems. In the present article, we elaborate on one of four strategic directions addressed by the Task Force, namely, the development of goals and objectives for surveillance, research and evaluation of the impact of suicide loss. By emphasizing methodological guidelines for the conduct of future studies and illustrating progressive programs of investigation as leading exemplars, we hope to contribute to the sophistication of research on public health initiatives, peer support and professional intervention with communities, families and individuals affected by suicide loss.

The effect of a grief support program on Turkish parents whose babies have died

YILDIZ, Hatice ; CIMETE, Güler
DEATH STUDIES, 10/2017, vol.41, n°9, p. 602-610

Thème : Deuil et travail du deuil. Cote : 00.07DEA

PSYCHOLOGIE ; PSYCHOSOCIOLOGIE ; TURQUIE ; ADULTE ; DEUIL ; PARENT ; JEUNE ADULTE ; MORT PERINATALE

The purpose of this study was to determine the effect of the Grief Support Program on the bereavement of parents whose babies had died. The sample consisted of 77 couples. The data was collected by the Texas Revised Inventory of Grief and the Coping Strategies Inventory. The intervention group was offered before, immediately after, and a month after death of their baby in accordance with the Grief Support Program guideline. The Grief Support Program did not affect grief intensity in the short term but had a positive effect 1 year later.

Gratitude, psychological well-being, and perceptions of posttraumatic growth in adults who lost a parent in childhood

GREENE, Nathan ; MCGOVERN, Katie
DEATH STUDIES, 08/2017, vol.41, n°7, p. 436-446

Thème : Deuil et travail du deuil. Cote : 00.07DEA

ETATS-UNIS ; ENFANT ; ADULTE ; PSYCHOLOGIE ; DEUIL ; MORT ; EMOTION ; RELATION INTERPERSONNELLE ; FAMILLE ; JEUNE ADULTE ; ENQUETE ; QUESTIONNAIRE

Findings from an online survey of 350 adults who experienced early parental death showed that current dispositional gratitude was positively correlated with psychological well-being and posttraumatic growth and negatively correlated with depression. Further, 281 participants produced textual responses indicating they could remember the time following their parent's death. Increases in gratitude attributable to the experience of losing a parent were reported by 79% of these participants. They associated their increased gratitude with a newfound belief that life is precious and with greater appreciation for loved ones. Direction of change in gratitude was associated with psychological well-being, posttraumatic growth, and depression.

"There but not there" - imagined bonds with siblings never known

CAMERON MEYER, Marcella ; CARLTON-FORD, Steve
DEATH STUDIES, 08/2017, vol.41, n°7, p. 416-426

Thème : Age de la vie, situations spécifiques liées à la fin de vie. Cote : 00.07DEA

ETATS-UNIS ; ADULTE ; MORT ; CHAGRIN ; IMAGINAIRE ; ATTACHEMENT ; RELATION INTERPERSONNELLE ; FRATRIE ; JEUNE ADULTE ; PSYCHOLOGIE

Continuing a bond after a loved one's death is considered typical and healthy. However, such a bond can continue symbolically only if it existed in the first place. What of indirect grievers, those who never knew the decedent? The authors describe bonds between individuals who did not have a living relationship to begin with, a concept referred to as imagined bonds. Forty-nine adults, who had a sibling die that they never knew, were interviewed. This article describes the bonds constructed between participants and the sibling they never knew. The authors compare and contrast the concepts of continuing bonds versus imagined bonds.

Continuing bonds and place

JONSSON, Annika ; WALTER, Tony
DEATH STUDIES, 08/2017, vol.41, n°7, p. 406-415

Thème : Mort. Cote : 00.07DEA

ADULTE ; MORT ; LIEU DECES ; RELATION INTERPERSONNELLE ; ENTRETIEN ; ATTACHEMENT ; SUEDE ; ROYAUME UNI

Where do people feel closest to those they have lost? This article explores how continuing bonds with a deceased person can be rooted in a particular place or places. Some conceptual resources are sketched, namely continuing bonds, place attachment, ancestral places, home, reminder theory, and loss of place. The authors use these concepts to analyze interview material with seven Swedes and five Britons who often thought warmly of the deceased as residing in a particular place and often performing characteristic actions. The destruction of such a place, by contrast, could create a troubling, haunting absence, complicating the deceased's absent-presence.

Memory making in end-of-life care in the adult intensive care unit - a scoping review of the research literature

RIEGEL, Melissa ; RANDALL, Sue ; BUCKLEY, Thomas
Australian critical care, 17/01/2019, Pagination inconnue

Thème : Age de la vie, situations spécifiques liées à la fin de vie.

SOUVENIR ; FIN VIE ; SOIN INTENSIF ; ADULTE ; REVUE LITTERATURE ; OUTIL ; PHOTOGRAPHIE ; FAMILLE ; ACCOMPAGNEMENT

OBJECTIVE: The objective of this review is to describe the practice of memory making as part of end-of-life care within an adult intensive care setting and determine reported outcomes.
METHODS: A scoping review of the literature was performed. Data were collected from sources such as ProQuest, CINAHL, Medline, Embase, PsycINFO, and PubMed using combinations of the keywords: including adult, critical care, intensive care, ICU, death, dying, grief, bereavement, end?of?life, memento*, memor*, keepsak*, and transitional object. Peer-reviewed studies reporting on the use of memory making within an adult intensive care setting and its outcomes for family members were included.
RESULTS: Four activities facilitating memory making as part of end-of-life care for adults are reported in the literature, all in the intensive care setting. Use of a computer-generated word cloud image received by families in the intensive care was reported as a meaningful keepsake and sometimes displayed in places such as the patient's funeral memorial. Offering a printed copy of the patient's electrocardiogram as a memento was considered by some to be extremely or very helpful during their bereavement experience and was reported by nursing staff to be well received by family members. The use of patient diaries during bereavement has been reported with the potential to promote better understanding of the events leading to the death, and photography was also included in some patient diaries as a visual memento.
CONCLUSION: Although limited evidence is available concerning memory making in the adult intensive care environment, from studies to date, surviving family members of deceased patients in the intensive care unit mostly report valuing memory-making opportunities when offered. However, further research is required to evaluate both healthcare staff's competence and confidence in offering memory making and determine if such offerings promote the family's adjustment to the loss of their loved one after a death in the intensive care area.

Origine : PubMed

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What do surviving children wish for from a dying parent? - a qualitative exploration

MURIEL, Anna C. ; MOORE, Cynthia W. ; BEISER, Marguerite ; PARK, Elyse R. ; LIM, Christopher T. ; RAUCH, Paula
DEATH STUDIES, 09/01/2019, p. 1-9

Thème : Deuil et travail du deuil.

RECHERCHE QUALITATIVE ; MORT ; PARENT ; ADULTE ; ENFANT ; PERSONNE ENDEUILLEE ; SOUVENIR ; TRAVAIL DEUIL

Legacy may play an important role in how children integrate the loss of a parent. Sixteen adults (19â€“40 years old, 69% women) who experienced the death of a parent from an illness before age 12 were interviewed, exploring legacies from their deceased parent. Transcribed interviews were iteratively analyzed by three independent coders. Extracted themes described their experiences and wish for remembrances and specific communication left for them, information about the parentâ€™s values and feelings about them, and personal possessions. This study provides novel data about legacies that bereaved children wish for in adulthood.

Origine : Taylor and Francis+NEJM

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Does long-term care coverage shape the impact of informal care-giving on quality of life? - a difference-in-difference approach

VAN DEN BROEK, Thijs ; GRUNDY, Emily
Ageing and society, 2018, p. 1-18

Thème : Soins. Cote : eD02.03.03

SEJOUR LONGUE DUREE ; AIDANT NATUREL ; QUALITE VIE ; ENFANT ; SUEDE ; DANEMARK ; ADULTE

The impact that providing care to ageing parents has on adult children's lives may depend on the long-term care (LTC) context. A common approach to test this is to compare whether the impact of care-giving varies between countries with different LTC coverage. However, this approach leaves considerable room for omitted variable bias. We use individual fixed-effects analyses to reduce bias in the estimates of the effects of informal care-giving on quality of life, and combine this with a difference-in-difference approach to reduce bias in the estimated moderating impact of LTC coverage on these effects. We draw on longitudinal data for Sweden and Denmark from the Survey of Health, Ageing and Retirement in Europe (SHARE) collected between 2004 and 2015. Both countries traditionally had generous LTC coverage, but cutbacks were implemented at the end of the 20th century in Sweden and more recently in Denmark. We use this country difference in the timing of the cutbacks to shed light on effects of LTC coverage on the impact care-giving has on quality of life. Our analyses show that care-giving was more detrimental for quality of life in Sweden than in Denmark, and this difference weakened significantly when LTC coverage was reduced in Denmark, but not in Sweden. This suggests that LTC coverage shapes the impact of care-giving on quality of life.

Origine : Cambridge Core

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Intergenerational caregivers of parents with end-stage heart failure

ALONSO, Windy Williams ; KITKO, Lisa A. ; HUPCEY, Judith E.
Research and theory for nursing practice, 11/2018, vol.32, n°4, p. 413-435

Thème : Soins.

ETUDE LONGITUDINALE ; JEUNE ADULTE ; ADULTE ; AIDANT NATUREL ; INSUFFISANCE CARDIAQUE ; FIN VIE ; RELATION INTER GENERATIONNELLE ; PERSONNE AGEE

Purpose: The purpose of this study was to longitudinally explore the experiences of young adult, adult, and older adult intergenerational caregivers caring for a parent with end-stage heart failure (HF).
Design: This study was a secondary analysis of qualitative data collected during a longitudinal study that sought to determine the palliative care needs of individuals with end-stage HF and their family caregivers. Methods: Longitudinal interviews from 23 young adult, adult, and older adult children who were caring for a parent with end-stage HF were selected for thematic analysis. Researchers individually analyzed the interviews and then, as a group, came to a consensus about themes. Findings: Five major themes were identified: caregiver resources, role management, caregiver-parent relationships, filial responsibility, and personal benefits and challenges.
Conclusions: These intergenerational caregivers struggled to balance their busy lives and caregiving roles. However, most felt supported by other family members or external resources. Longitudinal findings support a need for improved employer-based support for intergenerational caregivers and special attention to young carers in research and practice. Recognition of and advocacy for intergenerational caregivers providing care for a chronically ill parent is needed.

Origine : PubMed

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Parental health limitations, caregiving and loneliness among women with widowed parents - longitudinal evidence from France

VAN DEN BROEK, Thijs ; GRUNDY, Emily
European journal of ageing, 12/2018, vol.15, n°4, p. 369-377

Thème : Soins. Cote : eD02.03.03

PARENT ; VEUF ; ETUDE LONGITUDINALE ; FRANCE ; SOLITUDE ; FILLE ; AIDANT NATUREL ; ADULTE

We investigate how daughters' feelings of loneliness are impacted when widowed parents develop health limitations, and when daughters take on personal care tasks in response. Using longitudinal data from daughters of widowed parents drawn from the French Family and Intergenerational Relationships Study (ERFI, 1485 observations nested in 557 daughters), we assess (a) whether health limitations of widowed parents are associated with daughters' feelings of loneliness regardless of whether or not daughters provide personal care and (b) whether there is an effect of care provision on loneliness that cannot be explained by parental health limitations. Fixed effect regression analyses show that widowed parents' health limitations were associated with raised feelings of loneliness among their daughters. No significant additional effect of providing personal care to a widowed parent was found. Prior research on the impact of health limitations of older parents on the lives of their adult-children has focused mostly on issues related to informal caregiving. Our findings suggest that more attention to the psychosocial impact of parental health limitations-net of actual caregiving-on adult children's lives is warranted.

Origine : PubMed

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Advanced care planning in adult congenital heart disease - transitioning from repair to palliation and end-of-life care

TROOST, Els ; ROGGEN, Leen ; GOOSSENS, Eva ; MOONS, Philip ; DE MEESTER, Pieter ; VAN DE BRUAENE, Alexander ; BUDTS, Werner
International journal of cardiology, 26/10/2018, Pagination inconnue

Thème : Soins.

PLANIFICATION ; ANTICIPATION ; SOIN ; MALADIE CARDIOVASCULAIRE ; MALADIE CONGENITALE ; ADULTE

As a result of advances in pediatric care, the majority of patients born with congenital heart disease (CHD) survive into adulthood [1]. Effective transfer and transition programs assure that patients with CHD remain in follow-up and receive continuous holistic care. Unfortunately, adult patients with CHD carry residual lesions and sequelae putting them at risk for premature death related to re-interventions or complications; most commonly heart failure and arrhythmia [2]. The scientific adult CHD (ACHD) community has been working hard to identify variables related to worse outcomes, modifying those where possible in order to improve survival. Indeed, survival in adults with CHD has increased, but consequently, on top of CHD-related complications, patients are increasingly exposed to the standard cardiovascular risk factors. Therefore, a program for lifelong coaching on health behavior and life style management becomes indispensable. More emerging is that a substantial number of patients, in particular those with complex heart defects, will eventually end up in a stage with hardly any medical or interventional options left. Our healthcare provision has to be prepared to organize care for this specific group of patients who will die prematurely and require the timely development and establishment of advanced care planning. Advanced care planning should preferentially be set-up in expert CHD centers. The long-lasting relationship in ACHD care with healthcare providers offers an excellent basis with regards to prognosis, advanced care planning and end-of-life issues.

Origine : PubMed

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Anticipatory grief of spousal and adult children caregivers of people with dementia

CHEUNG, Daphne Sze Ki ; HO, Ken Hok Man ; CHEUNG, Tsz Fung ; LAM, Simon Ching ; TSE, Mimi Mun Yee
BMC palliative care, 20/11/2018, vol.17, n°1, p. 1-10

Thème : Soins. Cote : eD02.03.03

DEUIL ANTICIPE ; AIDANT NATUREL ; DEMENCE ; CHINE ; CONJOINT ; ENFANT ; ADULTE

BACKGROUND: Anticipatory grief (AG) among caregivers of people with dementia is common and has been found to be related to negative health outcomes. Previous studies showed different patterns of AG between spousal and adult children caregivers of people with dementia (PWD) at different stages; however, the levels of such grief are not yet compared. The findings in Western studies are very limited, and inconsistencies have also been found in Asian studies.
METHODS: One hundred and eight primary caregivers (54 spousal and 54 adult children) of community-dwelling PWD were recruited from elderly community services sectors in Hong Kong, China through quota sampling. The demographics, AG (measured by the Marwit-Meuser Caregiver Grief Inventory-short form), subjective caregiver burden, and well-being of the participants were assessed. A Functional Assessment Staging Test was used to grade the stages of dementia of the PWD. In this study, those in stages 4 and 5 were regarded as being at an earlier stage, and those in stages 6 and 7 at a later stage of dementia. The Mann-Whitney U-test and the Chi-square test were used to compare the variables between spousal and adult children caregivers, and the Kruskal-Wallis test was used to compare the outcomes among the sub-groups (spousal caregivers caring for relatives with earlier/later stage dementia; and adult children caregivers caring for relatives with earlier/later stage dementia). A post-hoc analysis was also conducted to identify differences between the sub-groups. Pearson's correlation was performed to investigate the bivariate relationships among AG, subjective caregiver burden, and well-being.
RESULTS: The results showed that spousal caregivers caring for relatives in a later stage of dementia experienced the highest level of AG and subjective caregiving burden, as compared with spousal caregivers caring for relatives in an earlier stage of dementia and adult children caregivers. Well-being was significantly negatively correlated with AG and subjective caregiver burden, while AG was also significantly correlated with subjective caregiver burden.
CONCLUSION: This study found that spousal caregivers of relatives in a later stage of dementia have significantly higher levels of AG, warranting special attention and extra support from palliative professionals.

Origine : PubMed

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Dilemmas adult children face in discussing end-of-life care preferences with their parents

ROSCOE, Lori A. ; BARRISON, Philip
Health communication, 30/10/2018, p. 1-7

Thème : Soins.

PLANIFICATION ; ANTICIPATION ; SOIN ; FAMILLE ; FIN VIE ; RELATION INTER GENERATIONNELLE ; PARENT ; CONFLIT VALEUR ; ENFANT ; PREFERENCE ; ADULTE

This study explored the perceived goals, barriers, and strategies that characterize family interactions about advance care planning (ACP), which is instrumental in guiding end-of-life care. Discussions within the family context can significantly improve end-of-life decision making but are complicated, partly because participants are attempting to achieve multiple, and often competing, goals. Participants (n = 75) responded to a hypothetical scenario about a conversation with a parent about ACP by completing an anonymous online survey. Respondents described their conversational goals, anticipated barriers, and strategies they thought would be helpful. Thematic data analysis identified four dilemmas participants faced while attempting to achieve multiple, conflicting goals: (1) the desire to make the parent feel wanted while discussing them not being around; (2) the need to be gentle but still direct; (3) the practical necessity of designating one decision-maker without provoking family conflict; and (4) the desire to lessen the burden on the designated decision-maker by providing necessary information while still placing them in a decision-making role. Participants reported using several strategies to manage these complex dilemmas. These findings provide support for the utility of Goldsmith's normative theory of social support in the context of discussions about ACP. The results also provide a foundation for developing conversational guides to facilitate high-quality family conversations about ACP between adult children and their parents.

Origine : PubMed

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Developing a research agenda for adult palliative care - a modified Delphi study

SULLIVAN, Rebecca ; UGALDE, Anna ; SINCLAIR, Craig ; BREEN, Lauren J.
JOURNAL OF PALLIATIVE MEDICINE, 21/11/2018, Pagination inconnue

Thème : Recherche - Evaluation - Méthodologie.

DEMARCHE PALLIATIVE ; RECHERCHE ; ADULTE ; AUSTRALIE

BACKGROUND: Little is known about research priorities in adult palliative care. Identifying research priorities for adult palliative care will help in increasing research quality and translation.
OBJECTIVE: The aim was to identify the views of health professionals' research priorities in adult palliative care that lead to development of a palliative care research agenda in Australia.
DESIGN: A modified three-round Delphi survey.
SETTING/SUBJECTS: Palliative care researchers and clinicians in Australia were invited to participate.
RESULTS: A total of 25 panelists completed round 1, 14 completed round 2, and 13 completed round 3. Round 1 resulted in 90 research priorities in 13 categories. Round 2 showed consensus agreement on 19/90 research priorities. Round 3 resulted in the top 10 research priorities of the 19 achieving consensus in round 2. Panelists agreed that research is needed on the transition to palliative care; improving communication about prognosis; increasing access to palliative care for indigenous communities, people who wish to remain at home, and people in aged care; addressing family caregivers' needs; promoting patients' and families' decision making; improving cross-cultural aspects of palliative care; determining the effects of assisted dying legislation; and improving bereavement care in rural, remote, and Aboriginal populations.
CONCLUSIONS: The expert panelists identified the top 10 research priorities for adult palliative care. These identified research priorities are the most urgent topics requiring attention to increase the quality of life of patients requiring palliative care and their family members.

Origine : PubMed

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Early parental loss and intimate relationships in adulthood - a nationwide study

HOEG, Beverley Lim ; JOHANSEN, Christoffer ; CHRISTENSEN, Jane ; FREDERIKSEN, Kirsten ; OKSBJERG DALTON, Susanne ; DYREGROV, Atle ; BOGE, Per ; DENCKER, Annemarie ; ENVOLD BIDSTRUP, Pernille
Developmental psychology, 05/2018, vol.54, n°5, p. 963-974

Thème : Deuil et travail du deuil.

MORT ; PARENT ; PERSONNE ENDEUILLEE ; ENFANT ; DANEMARK ; ADULTE ; RELATION INTERPERSONNELLE ; COUPLE

Being able to form and maintain intimate relationships is an essential part of development and the early loss of a parent may negatively affect this ability. This study investigates the association between parental loss before the age of 18 years and the formation and dissolution of marriage and cohabitation relationships in adulthood, in relation to factors that may help identify potentially vulnerable subgroups of bereaved children, that is, sex of the deceased parent, cause of death and child's age at the time of death. Using data from national registries, we followed all children born in Denmark between 1970 and 1995 (n = 1,525,173) and used Poisson regression models to assess rate ratios by gender for relationship formation and separation according to early parental loss. We stratified the analyses by sex of the deceased parent, cause of death and child's age at the time of death, and adjusted for the confounding effects of parental income, education level, and psychiatric illness. We found that parental loss was associated with a higher rate of relationship formation for young women, but not young men, and higher rates of separation for both men and women. The associations with separation were stronger for persons who lost a parent to suicide than to other causes. The effects were relatively small, a possible testimony to the resilience of developmental processes in most children. However, as long-term relationships are associated with physical and psychological health, interventions for bereaved children and families are important, especially in the subgroup bereaved by suicide.

Origine : PubMed

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Exploring end-of-life interaction in dyads of parents and adult children - a protocol for a mixed-methods study

STIEL, Stephanie ; STELZER, Eva-Maria ; SCHNEIDER, Nils ; HERBST, Franziska A.
BMC palliative care, 27/04/2018, vol.17, n°1, p. 1-8

Thème : Soins. Cote : eD02.04.01

FIN VIE ; ENFANT ; ADULTE ; MALADIE LETALE ; PHASE TERMINALE ; ETUDE LONGITUDINALE ; PARENT ; COMMUNICATION ; FAMILLE ; ALLEMAGNE ; RELATION INTERPERSONNELLE ; RELATION INTER GENERATIONNELLE ; DEMARCHE PALLIATIVE

BACKGROUND: A considerable number of terminally-ill adult children are outlived by at least one parent and receive palliative care prior to their death. At the same time, adult children continue to be confronted with their parents' terminal illnesses and end-of-life situations. The current study explores the specifics of dyadic interaction at the end of life between a) adult children suffering from a life-threatening disease and their parents, and b) terminally ill parents and their adult children.
METHODS: This prospective observational study aims at filling the existing gap on adult child-parent interaction specifics at the end of life using an exploratory mixed-methods framework. The mixed-methods framework combines a qualitative face-to face interview and quantitative self-report questionnaires to study the topic at hand. The qualitative interview will focus on experiences, expectations, and wishes with regard to dyadic communication, information about illness and prognosis, expressed and perceived burden and support as well as caregiving role at the end of life. The questionnaires will cover socio-demographics, loneliness, attachment style, social support, and emotional closeness.
DISCUSSION: The research group is currently adjusting a semi-structured interview guide and questionnaire instructions based on the results of a multiprofessional scientific advisory board meeting (Jan. 2018). In a next step, and prior to qualitative and quantitative data collection, the questionnaires will be piloted on patients and their family members in a palliative care setting. The main expected results are i) a description of the specifics of the interaction within and between both dyads, ii) the development of hypotheses and a theoretical framework on the specifics, similarities, and differences for both study groups, and iii) clinical conclusions on specific psychosocial care needs of both groups.
TRIAL REGISTRATION: The study was registered prospectively in the Health Services Research Germany register (Versorgungsforschung Deutschland - Datenbank) (Registration N° VfD_Dy@EoL_17_003897; date of registration: November 22, 2017) and in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00013206 ; date of registration: October 27, 2017). The study is visible in the International Clinical Trials Registry Platform Search Portal of the World Health Organization under the German Clinical Trials Register number.

Origine : PubMed

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Exploring opportunities for primary outpatient palliative care for adults with cystic fibrosis - a mixed-methods study of patients' needs

HOBLER, Mara R. ; ENGELBERG, Ruth A. ; CURTIS, J. Randall ; RAMOS, Kathleen J. ; ZANDER, Miriam I. ; HOWARD, Shacole S. ; GOSS, Christopher H. ; AITKEN, Moira L.
JOURNAL OF PALLIATIVE MEDICINE, 04/2018, vol.21, n°4, p. 513-521

Thème : Soins. Cote : 00.07JOU

ETATS-UNIS ; MALADIE ; PLANIFICATION ; DEMARCHE PALLIATIVE ; BESOIN ; HOSPITALISATION JOUR ; ADULTE

BACKGROUND: Persons with cystic fibrosis (CF) experience high morbidity and mortality, yet little is known about their palliative care needs and how clinicians may address these needs.
OBJECTIVES: (1) To identify palliative care and advance care planning needs of patients with CF and their families; and (2) to identify clinicians' potential roles in meeting these needs.
METHODS: A mixed-methods study of adult patients (age =18 years) with moderate-to-severe CF [forced expiratory volume in the first second (FEV1) <65% predicted] were recruited from a CF Center. Semi-structured interviews (30-60 minutes) and questionnaires were administered in person or by phone. Grounded theory was used to analyze the interviews. Questionnaires were analyzed descriptively.
RESULTS: Forty-nine patients (FEV1 % range = 19%-63%) participated; the participation rate was 80% for eligible patients. Three main domains of palliative care needs were identified: (1) to be listened to, feel heard, and be "seen"; (2) understanding the context around CF and its trajectory, with the goal of preparing for the future; and (3) information about, and potential solutions to, practical and current circumstances that cause stress. In questionnaires, few patients (4.3%) reported talking with their clinician about their wishes for care if they were to become sicker, but mixed-methods data demonstrated that more than half of participants were willing to receive palliative care services provided those services were adapted to CF.
CONCLUSION: Patients expressed a need for and openness to palliative care services, as well as some reluctance. They appreciated clinician communication that was open, forthcoming, and attuned to individualized concerns.

Fidelity and feasibility of a brief emergency department intervention to empower adults with serious illness to initiate advance care planning conversations

LEITER, Richard E. ; YUSUFOV, Miryam ; HASDIANDA, Mohammad Adrian ; FELLION, Lauren A. ; REUST, Audrey C. ; BLOCK, Susan D. ; TULSKY, James A. ; OUCHI, Kei
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 14/09/2018, Pagination inconnue

Thème : Soins.

SERVICE URGENCES ; ADULTE ; MALADIE GRAVE ; PLANIFICATION ; ANTICIPATION ; SOIN ; RELATION MEDECIN PATIENT ; COMMUNICATION ; PERSONNE AGEE ; MILIEU URBAIN

CONTEXT: Emergency Department (ED) visits provide opportunities to empower patients to discuss advance care planning (ACP) with their outpatient clinicians, but systematically developed, feasible interventions do not currently exist. Brief negotiated interview (BNI) interventions, which allow ED clinicians to efficiently motivate patients, have potential to meet this need.
OBJECTIVES: We developed a BNI ED intervention to empower older adults with life-limiting illness to formulate and communicate medical care goals to their primary outpatient clinicians. This study assessed the fidelity and feasibility of this intervention in a high-volume ED.
METHODS: We enrolled adult patients with serious illnesses (advanced cancer, congestive heart failure, chronic obstructive pulmonary disease, chronic kidney disease on dialysis, predicted survival <12 months) in an urban, tertiary care academic medical center ED. All participants received the BNI intervention. We video recorded the encounters. Two reviewers assessed the recordings for intervention fidelity based on adherence to the BNI steps (Part I) and communication skills (Part II).
RESULTS: We reviewed 46 video recordings. The mean total adherence score was 21.07/27 (SD 3.68) or 78.04%. The Part I mean adherence score was 12.07/15 (SD 2.07) or 80.47%. The Part II mean adherence score was 9.0/12 (SD 2.51) or 75%. The majority (75.6%) of recordings met the pre-specified threshold for high intervention fidelity.
CONCLUSION: ED clinicians can deliver a BNI intervention to increase ACP conversations with high fidelity. Future research is needed to study the intervention's efficacy in a wider patient population.

Origine : PubMed

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Mortality after the death of a parent in adulthood - a register-based comparison of two ethno-linguistic groups

SAARELA, Jan ; ROSTILA, Mikael
European journal of public health, 10/09/2018, p. 1-6

Thème : Santé. Cote : eD01.05

MORTALITE ; MORT ; PARENT ; FINLANDE ; CULTURE ; PERSONNE ENDEUILLEE ; SUEDE ; ADULTE

Background: Most research on parental bereavement and health have analysed health consequences of parental loss in childhood, while collateral health in adulthood has been less studied.
Methods: Using register-based population data from Finland, we analyse adult offspring aged 18-50 years with discrete-time hazard models that adjust for offspring and parental socioeconomic and demographic characteristics. In focus are adult children whose parents were alive and lived together at the beginning of the observation period. We compare two culturally distinct but otherwise similar ethno-linguistic groups, Finnish speakers and Swedish speakers.
Results: The results suggest that bereaved men have an approximately 30% higher death risk than non-bereaved men, while there is practically no difference in women. Associations between parental and child deaths are, as expected, stronger for concordant causes of death than for discordant causes of death. However, some associations for discordant causes of death remain, which may indicate causality. Among Swedish speakers, who have notably higher family stability than Finnish speakers, the death of one or both parents shows a stronger association with own mortality.
Conclusions: The estimated associations found are generally larger than in the neighbouring country Sweden, which may be due to a stronger obedience to traditional family values and patriarchal family roles in Finland. These findings suggest that the association between parental death and mortality in adult offspring may depend on the societal context as well as on cultural practices. These factors should be increasingly acknowledged in future studies on collateral health.

Origine : PubMed

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Olanzapine for the prevention and treatment of cancer-related nausea and vomiting in adults

SUTHERLAND, Anna ; NAESSENS, Katrien ; PLUGGE, Emma ; WARE, Lynda ; HEAD, Karen ; BURTON, Martin J. ; WEE, Bee
The Cochrane database of systematic reviews, 21/09/2018, vol.9, Pagination inconnue

Thème : Médecine.

PREVENTION ; CONTROLE SYMPTOME ; NAUSEE ; VOMISSEMENT ; ANTI EMETIQUE ; ADULTE ; CANCER ; EFFICACITE ; BESOIN SECURITE ; CHIMIOTHERAPIE

BACKGROUND: Olanzapine as an antiemetic represents a new use of an antipsychotic drug. People with cancer may experience nausea and vomiting whilst receiving chemotherapy or radiotherapy, or whilst in the palliative phase of illness.
OBJECTIVES: To assess the efficacy and safety of olanzapine when used as an antiemetic in the prevention and treatment of nausea and vomiting related to cancer in adults.
SEARCH METHODS: We searched CENTRAL, MEDLINE and Embase for published data on 20th September 2017, as well as ClinicalTrials.gov and World Health Organization International Clinical Trials Registry Platform for unpublished trials. We checked reference lists, and contacted experts in the field and study authors.
SELECTION CRITERIA: We included randomised controlled trials (RCTs) of olanzapine versus any comparator with or without adjunct therapies for the prevention or treatment, or both, of nausea or vomiting in people with cancer aged 18 years or older, in any setting, of any duration, with at least 10 participants per treatment arm.
DATA COLLECTION AND ANALYSIS: We used standard Cochrane methodology. We used GRADE to assess quality of evidence for each main outcome. We extracted data for absence of nausea or vomiting and frequency of serious adverse events as primary outcomes. We extracted data for patient perception of treatment, other adverse events, somnolence and fatigue, attrition, nausea or vomiting severity, breakthrough nausea and vomiting, rescue antiemetic use, and nausea and vomiting as secondary outcomes at specified time points.
MAIN RESULTS: We included 14 RCTs (1917 participants) from high-, middle- and low-income countries, representing over 24 different cancers. Thirteen studies were in chemotherapy-induced nausea and vomiting. Oral olanzapine was administered during highly emetogenic (HEC) or moderately emetogenic (MEC) chemotherapy (12 studies); chemoradiotherapy (one study); or palliation (one study). Eight studies await classification and 13 are ongoing.The main comparison was olanzapine versus placebo/no treatment. Other comparisons were olanzapine versus NK1 antagonist, prokinetic, 5-HT3 antagonist or dexamethasone.We assessed all but one study as having one or more domains that were at high risk of bias. Eight RCTs with fewer than 50 participants per treatment arm, and 10 RCTs with issues related to blinding, were at high risk of bias. We downgraded GRADE assessments due to imprecision, inconsistency and study limitations. Olanzapine versus placebo/no treatment Primary outcomes Olanzapine probably doubles the likelihood of no nausea or vomiting during chemotherapy from 25% to 50% (risk ratio (RR) 1.98, 95% confidence interval (CI) 1.59 to 2.47; 561 participants; 3 studies; solid tumours; HEC or MEC therapy; moderate-quality evidence) when added to standard therapy. Number needed to treat for additional beneficial outcome (NNTB) was 5 (95% CI 3.3 - 6.6).It is uncertain if olanzapine increases the risk of serious adverse events (absolute risk difference 0.7% more, 95% CI 0.2 to 5.2) (RR 2.46, 95% CI 0.48 to 12.55; 7 studies, 889 participants, low-quality evidence).Secondary outcomes. Four studies reported patient perception of treatment. One study (48 participants) reported no difference in patient preference. Four reported quality of life but data were insufficient for meta-analysis. Olanzapine may increase other adverse events (RR 1.71, 95% CI 0.99 to 2.96; 332 participants; 4 studies; low-quality evidence) and probably increases somnolence and fatigue compared to no treatment or placebo (RR 2.33, 95% CI 1.30 to 4.18; anticipated absolute risk 8.2% more, 95% CI 1.9 to 18.8; 464 participants; 5 studies; moderate-quality evidence). Olanzapine probably does not affect all-cause attrition (RR 0.99, 95% CI 0.57 to 1.73; 943 participants; 8 studies; I² = 0%). We are uncertain if olanzapine increases attrition due to adverse events (RR 3.00, 95% CI 0.13 to 70.16; 422 participants; 6 studies). No participants withdrew due to lack of efficacy. We are uncertain if olanzapine reduces breakthrough nausea and vomiting (RR 0.38, 95% CI 0.10 to 1.47; 501 participants; 2 studies; I² = 54%) compared to placebo or no treatment. No studies reported 50% reduction in severity of nausea or vomiting, use of rescue antiemetics, or attrition.We are uncertain of olanzapine's efficacy in reducing acute nausea or vomiting. Olanzapine probably reduces delayed nausea (RR 1.71, 95% CI 1.40 to 2.09; 585 participants; 3 studies) and vomiting (RR 1.28, 95% CI 1.14 to 1.42; 702 participants; 5 studies).Subgroup analysis: 5 mg versus 10 mg. Planned subgroup analyses found that it is unclear if 5 mg is as effective an antiemetic as 10 mg. There is insufficient evidence to exclude the possibility that 5 mg may confer a lower risk of somnolence and fatigue than 10 mg.Other comparisons One study (20 participants) compared olanzapine versus NK1 antagonists. We observed no difference in any reported outcomes.One study (112 participants) compared olanzapine versus a prokinetic (metoclopramide), reporting that olanzapine may increase freedom from overall nausea (RR 2.95, 95% CI 1.73 to 5.02) and overall vomiting (RR 3.03, 95% CI 1.78 to 5.14). One study (62 participants) examined olanzapine versus 5-HT3 antagonists, reporting olanzapine may increase the likelihood of 50% or greater reduction in nausea or vomiting at 48 hours (RR 1.82, 95% CI 1.11 to 2.97) and 24 hours (RR 1.36, 95% CI 0.80 to 2.34). One study (229 participants) compared olanzapine versus dexamethasone, reporting that olanzapine may reduce overall nausea (RR 1.73, 95% CI 1.37 to 2.18), overall vomiting (RR 1.27, 95% CI 1.10 to 1.48), delayed nausea (RR 1.66, 95% CI 1.33 to 2.08) and delayed vomiting (RR 1.25, 95% CI 1.07 to 1.45).
AUTHORS' CONCLUSIONS: There is moderate-quality evidence that oral olanzapine probably increases the likelihood of not being nauseous or vomiting during chemotherapy from 25% to 50% in adults with solid tumours, in addition to standard therapy, compared to placebo or no treatment. There is uncertainty whether it increases serious adverse events. It may increase the likelihood of other adverse events, probably increasing somnolence and fatigue. There is uncertainty about relative benefits and harms of 5 mg versus 10 mg. We identified only RCTs describing oral administration. The findings of this review cannot be extrapolated to provide evidence about the efficacy and safety of any injectable form (intravenous, intramuscular or subcutaneous) of olanzapine.

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ADOLESCENT ADULTE CANCER DEMARCHE PALLIATIVE DEUIL DOULEUR ENFANT ETATS-UNIS FAMILLE FIN VIE MORT PARENT PATIENT PERSONNE AGEE SOIN

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