Hospice family caregivers' uncertainty, burden, and unmet needs in prospective audio diaries Journal Article
| Authors: | Hebdon, M. C. T.; Cloyes, K. G.; Vega, M.; Rosenkranz, S. J.; Reblin, M.; Tay, D.; Mooney, K.; Ellington, L. |
| Article Title: | Hospice family caregivers' uncertainty, burden, and unmet needs in prospective audio diaries |
| Abstract: | Hospice cancer caregivers' (HCCs') burden and unmet needs are well documented in the literature through retrospective, standardized self-report surveys. Hospice cancer caregiver daily experiences of burden and unmet needs are rarely captured within a real-time context. The purpose of this secondary data analysis was to characterize HCCs' day-to-day burden and unmet needs with prospective HCC (N = 50) audio diary data between hospice enrollment and patient death. Uncertainty theory provided a framework for analysis. Diaries were transcribed, analyzed deductively and inductively, and organized thematically. Uncertainty in day-to-day experiences was an important driver of HCC burden and unmet needs. Unmet needs included unclear/unmet expectations regarding hospice care team support; not understanding the extent of HCC role and involvement; and communication challenges with hospice team members. Sources of HCCs' burden were dissonance between how they "should" feel and how they actually felt; feeling alone/having no outlet to express feelings; concerns about their own health and subsequent patient impact; and feeling helpless/occupying a liminal space. Uncertainty surrounding HCCs' experiences encompassed interactions with hospice care teams and the nature of end-of-life caregiving with symptom management, the dying process, and the HCC role. Hospice care teams can respond to uncertainty through assessment, understanding, and recognition of the daily context of HCCs. |
| Keywords: | adult; aged; aged, 80 and over; prospective studies; neoplasms; self report; attitude to illness; conceptual framework; emotions; professional-family relations; socioeconomic factors; attitude to death; health services needs and demand; caregiver burden; surveys; secondary analysis; descriptive statistics; middle age; retrospective design; audiorecording; family attitudes; thematic analysis; patient admission; uncertainty; terminally ill patients; support, psychosocial; record review; caregivers -- psychosocial factors; human; male; female; life experiences; diaries; multimethod studies; caregiver attitudes; hospice nursing; hospice patients |
| Journal Title: | Journal of Hospice & Palliative Nursing |
| Volume: | 25 |
| Issue: | 6 |
| ISSN: | 1522-2179 |
| Publisher: | Lippincott Williams & Wilkins |
| Date Published: | 2023-12-01 |
| Start Page: | 321 |
| End Page: | 329 |
| Language: | English |
| DOI: | 10.1097/njh.0000000000000975 |
| PROVIDER: | EBSCOhost |
| PROVIDER: | cinahl |
| PUBMED: | 37851960 |
| PMCID: | PMC10843703 |
| DOI/URL: | |
| Notes: | Accession Number: 173615603 -- Entry Date: 20231117 -- Revision Date: 20231117 -- Publication Type: Journal Article; research; tables/charts -- Journal Subset: Core Nursing; Double Blind Peer Reviewed; Editorial Board Reviewed; Expert Peer Reviewed; Nursing; Peer Reviewed; USA -- NLM UID: 100887419. -- Source: Cinahl |
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