A qualitative exploration of cAregiver experienCes Of conseRvatively maNaged kidney failure: the ACORN study
Notice bibliographique
Résumé
INTRODUCTION: Patients with kidney failure who are older, frail and have multiple conditions can choose not to receive dialysis and instead receive conservative management, which focuses on symptom management and maximising quality of life. Many of these patients rely on support from informal caregivers, such as family and friends. However, the experiences of informal caregivers of people who choose conservative management, particularly towards the end of life, are generally unknown. AIM: To explore the experiences of informal caregivers of people receiving CM for kidney failure alongside healthcare professionals who provide treatment and care to people receiving CM to identify and understand the unmet needs of informal caregivers. METHODS: Informal caregivers of patients receiving conservative management (n = 38) were recruited from five sites, two in England and three in Northern Ireland. Semi-structured interviews focused on the experiences of the caring role were conducted with informal caregivers and thematically analysed. Focus groups and one semi-structured interview were conducted at two sites (one in Northern Ireland, one in England) with healthcare professionals who had experience caring for people receiving conservative management (n = 15). The focus groups explored their experience of supporting informal caregivers and their perspectives on the needs of informal caregivers. These were thematically analysed, and the analysis from the two data sets (informal caregivers and healthcare professionals) was integrated. RESULTS: Three themes and nine subthemes were synthesised from the data. These included: Defining the role of 'carer', which captured perspectives on the caring role and motivations for caring; keeping the end in mind, which described attitudes and awareness of disease progression and death; and balancing the burden, which encapsulated the ways informal caregivers managed the burden of caring. CONCLUSION: Informal caregivers had multifaceted experiences and felt well-supported by renal healthcare teams. Cultural factors strongly influence caregivers' experiences of the role, while communication and the provision of information were identified as the key needs of caregivers. CLINICAL TRIAL NUMBER: Not applicable.
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Comment cette classification a été obtenuedéplier
Prédiction distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,000 | 0,000 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule tête enseignante, pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».