Valuing the Invaluable: 2023 Update Detailed Methodology

Reinhard, Susan C.; Caldera, Selena; Houser, Ari; Choula, Rita

doi:10.26419/ppi.00082.007

Cited by 1 publication

(1 citation statement)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…35 This financial investment in family caregivers would support their needs and honor their immense economic contributions to chronic illness and palliative care. 41…”

Section: Discussionmentioning

confidence: 99%

Hospice Family Caregivers' Uncertainty, Burden, and Unmet Needs in Prospective Audio Diaries

Thomas Hebdon,

Cloyes,

Vega

et al. 2023

J Hosp Palliat Nurs

View full text Add to dashboard Cite

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.

show abstract

“…35 This financial investment in family caregivers would support their needs and honor their immense economic contributions to chronic illness and palliative care. 41…”

Section: Discussionmentioning

confidence: 99%