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Les proches aidants ou des solidarités en action

ACTUALITE ET DOSSIER EN SANTE PUBLIQUE, Haut Conseil de la Santé Publique , 12/2019 , n°109, 64 p.

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Administration of end-of-life drugs by family caregivers during Covid-19 pandemic

BOWERS, Ben ; POLLOCK, Kristian ; BARCLAY, Stephen
BMJ, 24/04/2020, vol.369, p. 1-2

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Caregiving and bereavement in palliative care - a cross-cultural study between Brazil and Portugal

DELALIBERA, Mayra ; COELHO, Alexandra ; FRADE, Pedro ; BARBOSA, Antonio ; LEAL, Isabel
Transcultural Psychiatry, 26/03/2020, Pagination inconnue

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A theoretical exploration of live discharge from hospice for caregivers of adults with dementia

WLADKOWSKI, Stephanie P. ; WALLACE, Cara L. ; GIBSON, Allison
Journal of social work in end-of-life and palliative care, 30/03/2020, p. 1-18

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End-of-life care for glioma patients - the caregivers’ perspective

HERTLER, Caroline ; EISELE, Günter ; GRAMATZKI, Dorothee ; SEYSTAHL, Katharina ; WOLPERT, Fabian ; ROTH, Patrick ; WELLER, Michael
Journal of neuro-oncology, 30/03/2020, Pagination inconnue

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Evaluation of a collaborative advance care planning intervention among older adult home health patients and their caregivers

TAY, Djin L. ; ELLINGTON, Lee ; TOWSLEY, Gail L. ; SUPIANO, Katherine ; BERG, Cynthia A.
JOURNAL OF PALLIATIVE MEDICINE, 27/03/2020, Pagination inconnue

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Thème : Soins.

PROJET SOIN ANTICIPE ; PATIENT ; AIDANT ; COOPERATION ; PERSONNE AGEE

Background: Caregivers are decision stakeholders; yet, few interventions have been developed to help patients and caregivers collaborate on advance care planning (ACP).
Objective: To evaluate a theory-based ACP pilot intervention, Deciding Together, to improve decisional quality, readiness, collaboration, and concordance in ACP decisions for older adult home health (HH) patients and caregivers.
Design: A one-group, pre- and posttest study using matched questionnaires was conducted. The intervention consisted of a clinical vignette, theoretically guided conversation prompts, and a shared decision-making activity.
Setting/Subjects:N = 36 participants (n = 18 HH patients; n = 18 family and nonfamily caregivers) were purposively recruited from a HH agency to participate in the intervention at patients' homes.
Measurements: Demographic and baseline measures were collected for relationship quality, health status, and previous ACP engagement. Outcome measures included perceptions of collaboration, readiness for ACP, concordance in life-sustaining treatment preferences (cardiopulmonary resuscitation, antibiotics, artificial nutrition and hydration, and mechanical ventilation), and decisional conflict. Descriptive statistics, Cohen's coefficients, paired t tests, McNemar's tests, and Wilcoxon signed-rank tests (and effect size estimates, r = z/vN) were calculated using R-3.5.1 (p < 0.05). Single value imputation was used for missing values.
Results: While no significant differences were found for perceptions of collaboration, and readiness for ACP, patients (r = 0.38, p = 0.02) and caregivers (r = 0.38, p = 0.02) had reduced decisional conflict at posttest. Patients' and caregivers' agreement increased by 27.7% for an item assessing patients' preference for artificial nutrition and hydration (p = 0.03).
Conclusions: This study suggests that collaborative ACP decision making may improve decisional conflict for older adult HH patients and their caregivers.

Origine : DOI.org (Crossref

Beliefs of Israeli family caregivers of people with dementia toward advance care planning

KERMEL-SCHIFFMAN, Ile ; WERNER, Perla
Journal of social work in end-of-life and palliative care, 06/04/2020, p. 1-16

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Challenges in palliative care research on family caregivers - who volunteers for interviews?

BREEN, Lauren J. ; JOHNSON, Andrew R. ; O'CONNOR, Moira ; HOWTING, Denise ; AOUN, Samar M.
JOURNAL OF PALLIATIVE MEDICINE, 07/04/2020, Pagination inconnue

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Effects of a telehealth early palliative care intervention for family caregivers of persons with advanced heart failure - the ENABLE CHF-PC randomized clinical trial

DIONNE-ODOM, J. Nicholas ; EJEM, Deborah B. ; WELLS, Rachel ; AZUERO, Andres ; STOCKDILL, Macy L. ; KEEBLER, Konda ; SOCKWELL, Elizabeth ; TIMS, Sheri ; ENGLER, Sally ; KVALE, Elizabeth ; DURANT, Raegan W. ; TUCKER, Rodney O. ; BURGIO, Kathryn L. ; TALLAJ, Jose ; PAMBOUKIAN, Salpy V. ; SWETZ, Keith M. ; BAKITAS, Marie A.
JAMA network open, 13/04/2020, vol.3, n°4, Pagination inconnue

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Is preparation for end of life associated with pre-death grief in caregivers of people with dementia?

MOORE, Kirsten J. ; CRAWLEY, Sophie ; VICKERSTAFF, Victoria ; COOPER, Claudia ; KING, Michael ; SAMPSON, Elizabeth L.
International psychogeriatrics, 03/04/2020, p. 1-11

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The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers - a qualitative systematic review

FLEMMING, Kate ; TURNER, Victoria ; BOLSHER, Samantha ; HULME, Bill ; MCHUGH, Elizabeth ; WATT, Ian
PALLIATIVE MEDICINE, 14/04/2020, Pagination inconnue

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The impact of varying levels of advance care planning engagement on perceptions of the end-of-life experience among caregivers of deceased patients with cancer

LEVOY, Kristin ; BUCK, Harleah ; BEHAR-ZUSMAN, Victoria
American journal of hospice and palliative medicine, 13/04/2020, Pagination inconnue

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Effectiveness of palliative care consultation service on caregiver burden over time between terminally ill cancer and non-cancer family caregivers

WU, Li-Fen ; LIN, Chin ; HUNG, Yu-Chun ; CHANG, Li-Fang ; HO, Ching-Liang ; PAN, Hsueh-Hsing
Supportive care in cancer, 15/04/2020, Pagination inconnue

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Soins palliatifs à domicile - attentes des proches envers le médecin généraliste

SAUSSAC, Camille ; MATHE, Amandine ; BURUCOA, Benoît ; DYL, Céline
REVUE INTERNATIONALE DE SOINS PALLIATIFS, 12/2019, vol.34, n°4, p. 109-116

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What do family care-givers want from domiciliary care for relatives living with dementia? - a qualitative study

POLLOCK, Kristian ; WILKINSON, Samantha ; PERRY-YOUNG, Lucy ; TURNER, Nicola ; SCHNEIDER, Justine
Ageing and society, 06/03/2020, p. 1-14

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Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia

RIEDL, Lina ; BERTOK, Manuela ; HARTMANN, Julia ; FISCHER, Julia ; ROSSMEIER, Carola ; DINKEL, Andreas ; ORTNER, Marion ; DIEHL-SCHMID, Janine
BMC palliative care, 12/03/2020, vol.19, n°1, p. 1-8

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Thème : Soins. Cote : eD02.03.03

GUIDE ; DEMARCHE PALLIATIVE ; AIDANT ; DEMENCE

BACKGROUND: Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers' knowledge regarding palliative care issues and caregivers' involvement in medical and care decisions before and after studying this booklet.
METHODS: A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet.
RESULTS: Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future.
CONCLUSIONS: The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia.

Origine : PubMed

Non-use of community health-care services - an exploratory cross-sectional study among family care-givers for older, home-dwelling persons with dementia

MOHOLT, Jill-Marit ; FRIBORG, Oddgeir ; HENRIKSEN, Nils ; HAMRAN, Torunn ; BLIX, Bodil H.
Ageing and society, 2020, p. 1-25

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"I want to go home" - how location at death influences caregiver well-being in bereavement

WALDROP, Deborah P. ; MCGINLEY, Jacqueline M.
Palliative and supportive care, 16/03/2020, p. 1-8

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Evaluation of measurement equivalence of the family satisfaction with the end-of-life care (FAMCARE) - tests of differential item functioning between hispanic and non-hispanic white caregivers

TERESI, Jeanne A. ; OCEPEK-WELIKSON, Katja ; RAMIREZ, Mildred ; KLEINMAN, Marjorie ; ORNSTEIN, Katherine ; SIU, Albert ; LUCHSINGER, Jose
Palliative and supportive care, 19/03/2020, p. 1-13

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Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home - study protocol for a web-based intervention

ALVARIZA, Anette ; HAGER-TIBELL, Louise ; HOLM, Maja ; STEINECK, Gunnar ; KREICBERGS, Ulrika
BMC palliative care, 17/03/2020, vol.19, n°1, p. 1-8

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