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Family caregiving at the end of life and hospice use - a national study of medicare beneficiaries

KUMAR, Vedika ; ANKUDA, Claire K. ; ALDRIDGE, Melissa D. ; HUSAIN, Mohammed ; ORNSTEIN, Katherine A.
Journal of the American Geriatrics Society, 30/06/2020, Pagination inconnue

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Palliative care needs and care giver burden in neurodegenerative diseases - a cross sectional study

LITHIN, Zacharias ; THOMAS, Priya T. ; WARRIER, G. Manjusha ; BHASKAR, Adhin ; NASHI, Saraswathi ; VENGALIL, Seena ; POLAVARAPU, Kiran ; KUMAR, Preethish ; YADAV, Ravi ; ALLADI, Suvarna ; ATCHAYARAM, Nalini ; PAL, Pramod K.
Annals of Indian Academy of Neurology, 06/2020, vol.23, n°3, p. 313-317

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Barriers to advance care planning - a qualitative study of seriously ill Chinese patients and their families

CHEUNG, Johnny T. K. ; AU, Doreen ; IP, Anthony H. F. ; CHAN, Jenny ; NG, Kenway ; CHEUNG, Lok ; YUEN, Jacqueline ; HUI, Elsie ; LEE, Jenny ; LO, Raymond S.K. ; WOO, Jean
BMC palliative care, 12/2020, vol.19, n°1, p. 80-

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Constructing stability - a classic grounded theory of next-of-kin in palliative cancer care

WERKANDER HARSTADE, Carina ; SANDGREN, Anna
BMC palliative care, 05/06/2020, vol.19, n°1, p. 1-9

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Experiences of oldest-old caregivers whose partner is approaching end-of-life - a mixed-method systematic review and narrative synthesis

MORGAN, Tessa ; BHARMAL, Aamena ; DUSCHINSKY, Robbie ; BARCLAY, Stephen
Plos one, 09/06/2020, vol.15, n°6, p. 1-18

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Navigating the transition from advanced illness to bereavement - how provider communication informs family-related roles and needs

MCGINLEY, Jacqueline M. ; WALDROP, Deborah P.
Journal of social work in end-of-life and palliative care, 02/04/2020, vol.16, n°2, p. 175-198

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A drive for structure - a longitudinal qualitative study of the implementation of the carer support needs assessment tool (CSNAT) intervention during hospital discharge at end of life

HALL, Alex ; EWING, Gail ; ROWLAND, Christine ; GRANDE, Gunn
PALLIATIVE MEDICINE, 03/06/2020, p. 1-9

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“Dying with dignity” - a qualitative study with caregivers on the care of individuals with terminal cancer

HAYDEN, Lucy ; DUNNE, Simon
OMEGA JOURNAL OF DEATH AND DYING, 03/06/2020, Pagination inconnue

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End-of-life care in rural and regional Australia - patients’, carers’ and general practitioners’ expectations of the role of general practice, and the degree to which they were met

JOHNSON, Claire E. ; SENIOR, Hugh ; MAC VEY, Peta ; TEAM, Victoria ; IVES, Angela ; MITCHELL, Geoffrey
Health and social care in the community, 03/06/2020, Pagination inconnue

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Spirituality alleviates the burden on family members caring for patients receiving palliative care exclusively

VIGNA, Paula Menis ; DE CASTRO, Isac ; FUMIS, Renata Rego Lins
BMC palliative care, 03/06/2020, vol.19, n°1, p. 1-8

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The concerns and experience of decision-making regarding do-not-resuscitate orders among caregivers in hospice palliative care

CHIANG, Ching-Chun ; CHANG, Shu-Chuan ; FAN, Sheng-Yu
American journal of hospice and palliative medicine, 17/06/2020, Pagination inconnue

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Humanity behind the intention of primary caregiver to choose withdrawing life-sustaining treatment for terminating patients

CHEN, Ya-Chin ; LOH, El-Wui ; HUANG, Tsai-Wei
Patient education and counseling, 08/06/2020, Pagination inconnue

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Resilience in advanced cancer caregiving

OPSOMER, Sophie ; DE LEPELEIRE, Jan ; LAUWERIER, Emelien ; PYPE, Peter
BRITISH JOURNAL OF GENERAL PRACTICE, 06/2020, vol.70, n°suppl. 1, Pagination inconnue

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"This is your golden time. You enjoy it and you’ve plenty time for crying after" - how dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis - a qualitative study

LISIECKA, Dominika ; KELLY, Helen ; JACKSON, Jeanne
PALLIATIVE MEDICINE, 17/06/2020, Pagination inconnue

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Definition of a good death, attitudes toward death, and feelings of interconnectedness among people taking care of terminally ill patients with cancer - an exploratory study

BOVERO, Andrea ; GOTTARDO, Francesco ; BOTTO, Rossana ; TOSI, Chiara ; SELVATICO, Marta ; TORTA, Riccardo
The American journal of hospice and palliative care, 05/2020, vol.37, n°5, p. 343-349

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Understanding family caregivers’ needs to support relatives with advanced progressive disease at home - an ethnographic study in rural Portugal

TEIXEIRA, Maria João Cardoso ; ABREU, Wilson ; COSTA, Nilza ; MADDOCKS, Matthew
BMC palliative care, 25/05/2020, vol.19, n°1, p. 1-11

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Becoming a family caregiver of a patient living with cancer

SERCEKUS, Pinar
International Journal of Palliative Nursing, 02/06/2020, vol.26, n°5, p. 206-212

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Exploring family caregiver communication difficulties and caregiver quality of life and anxiety

WITTENBERG, Elaine ; KERR, Anna M. ; GOLDSMITH, Joy
American journal of hospice and palliative medicine, 26/06/2020, Pagination inconnue

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Participating in the personal care of a person living with a life-limiting illness in a hospice inpatient setting - the informal caregiver's perspective

MCPHERSON, Lorraine ; MILLIGAN, Stuart ; STEVENS, Elaine
International Journal of Palliative Nursing, 02/06/2020, vol.26, n°5, p. 246-257

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Thème : Soins.

RECHERCHE QUALITATIVE ; AIDANT ; UNITE SOINS PALLIATIFS ; SOIN

Methods: Using semi-structured interviews, this descriptive qualitative research study examined informal caregivers' perspectives of participating in the personal care of a person living with a life-limiting illness within one hospice inpatient setting. Some 10 principal, informal caregivers of hospice inpatients were recruited by means of purposive sampling, using posters displayed in the hospice inpatient unit. Thus, participation was entirely ‘opt-in’. A flash card was displayed at the beginning of each interview to determine a definition of personal care. Field notes and digital audio recording were used to capture data collected.
Results: Data were thematically analysed and demonstrated that informal caregivers' perceptions of personal care included everything that allowed the patient to remain the person they were. Informal caregivers reported an acceptable balance between being able to carry out personal care and hospice nursing staff involvement, despite no discussions being carried out to establish their wishes. Prior experiences of informal caregiving, and individual caregiver preparedness, contributed to negative and positive feelings about participating in personal care. Informal caregivers reported additional support and education needs associated with being able to participate in the personal care of patients on discharge and in the future.
Conclusions: The emergent themes provide palliative care practitioners with direction for professional practice and research around supporting informal caregivers participating in personal care. Healthcare professionals need to clarify terminology of personal care by having dialogues with informal caregivers and acting on these accordingly. However, not all informal caregivers want such conversations. Consequently, healthcare professionals should approach this topic sensitively. Healthcare professionals ought to be asking informal caregivers if they wish to participate in personal care. Hospice nurses need to engage, support and educate informal caregivers about personal care. Furthermore, they should help to maintain and develop the skills of those informal caregivers who want to continue to play this role and not allow them to become deskilled.

Origine : DOI.org (Crossref

Experiences of relatives with outpatient palliative care - a cross-sectional study

FRINGER, André ; STANGLE, Sabrina ; BISCHOFBERGER, Iren ; BUCHE, Daniel ; PRAXMARER, Renate ; CH. OTT, Stefan ; SCHNEPP, Wilfried
International Journal of Palliative Nursing, 02/06/2020, vol.26, n°5, p. 230-237

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