The experience of palliative care service provision for people with non-malignant respiratory disease and their family carers: An all-Ireland qualitative study.

Détails

ID Serval
serval:BIB_4E7F7D771283
Type
Article: article d'un périodique ou d'un magazine.
Collection
Publications
Titre
The experience of palliative care service provision for people with non-malignant respiratory disease and their family carers: An all-Ireland qualitative study.
Périodique
Journal of advanced nursing
Auteur(s)
Mc Veigh C., Reid J., Larkin P., Porter S., Hudson P.
ISSN
1365-2648 (Electronic)
ISSN-L
0309-2402
Statut éditorial
Publié
Date de publication
02/2018
Peer-reviewed
Oui
Volume
74
Numéro
2
Pages
383-394
Langue
anglais
Notes
Publication types: Journal Article
Publication Status: ppublish
Résumé
To explore specialist and generalist palliative care provision for people with non-malignant respiratory disease, in rural and urban areas in the North and Republic of Ireland.
Globally, palliative care is recommended as an appropriate healthcare option for people with advanced non-malignant lung disease. Yet, there is limited evidence regarding the integration of palliative care for this client group.
Qualitative study.
Convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from two rural and two urban sites on the Island of Ireland. Data were collected throughout 2012 and 2013 through semi-structured interviews with carers of patients with Chronic Obstructive Pulmonary Disease (N = 12), interstitial lung disease (N = 4) or bronchiectasis (N = 1) who had died 3-18 months previously; and four focus groups with healthcare professionals. Data were analysed using a thematic analysis framework.
Carers' interviews yielded three overarching themes: (1) lack of preparedness for death, due to ambiguity regarding disease trajectory; (2) lack of consistency in palliative care delivery, in relation with the receipt of generalist and specialist palliative care; and (3) role ambiguity, related to their caregiving role. Focus groups identified two overarching themes: (1) barriers to appropriate palliative care; and (2) the future direction of palliative care for patient with non-malignant respiratory disease.
The uncertain disease trajectory was not only experienced by carers but also healthcare professionals. Although referral to specialist palliative care services was perceived as increasing, the availability and coordination of generalist and specialist palliative care services were fragmented and varied dependent on geographical location.
Mots-clé
Adult, Aged, Aged, 80 and over, Attitude of Health Personnel, Caregivers/psychology, Female, Focus Groups, Humans, Ireland, Male, Middle Aged, Northern Ireland, Nursing Staff, Hospital/psychology, Palliative Care/psychology, Qualitative Research, Respiratory Tract Diseases/nursing, Rural Population/statistics & numerical data, Terminal Care/psychology, Urban Population/statistics & numerical data, COPD, bronchiectasis, chronic obstructive pulmonary disease, family carers, interstitial lung disease, non-malignant respiratory disease, nursing and healthcare professionals, palliative care, qualitative research
Pubmed
Web of science
Création de la notice
13/02/2019 14:09
Dernière modification de la notice
20/08/2019 14:04
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