A qualitative exploration of cAregiver experienCes Of conseRvatively maNaged kidney failure: the ACORN study
Bibliographic record
Abstract
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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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".