Support Needs of Informal Hospice Caregivers: A Qualitative Study

Kutner, Jean S.; Kilbourn, Kristin; Costenaro, Allison; Lee, Courtney A.; Nowels, Carolyn T.; Vancura, Jenny L.; Anderson, Derek R.; Keech, Tarah

doi:10.1089/jpm.2009.0178

Cited by 33 publications

(44 citation statements)

References 18 publications

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“…We chose to focus on four of the established eight domains of care: physical, psychological, social, and spiritual/existential aspects of care. In addition to being consistent with the hospice philosophy of holistic care and the intersection of our study with the other arms of the program project grant (focused on symptom management and bereavement outcomes), these domains were also consistent with the home hospice literature, which shows the demands of providing care for an ill and dying significant other often result in caregivers experiencing a reduction in their own physical, psychosocial, and spiritual wellbeing (Chentsova-Dutton et al, 2000; DuBose, 2002; Girgis, Lambert, Johnson, Waller, & Currow, 2013; Grunfeld et al, 2004; Hebert, Arnold, & Schulz, 2007; Kutner et al, 2009; Romito, Goldzweig, Cormio, Hagedoorn, & Andersen, 2013). Thus, we were interested in identifying discussions that incorporated these domains during home hospice visits, and how conversations changed over time as death became imminent.…”

Section: Challenge: Developing Coding Systems Using a Conceptual Framsupporting

confidence: 85%

Addressing Methodological Challenges in Large Communication Data Sets: Collecting and Coding Longitudinal Interactions in Home Hospice Cancer Care

Reblin

Clayton

John

et al. 2015

Health Communication

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In this paper, we present strategies for collecting and coding a large longitudinal communication dataset collected across multiple sites, consisting of over 2000 hours of digital audio recordings from approximately 300 families. We describe our methods within the context of implementing a large-scale study of communication during cancer home hospice nurse visits, but this procedure could be adapted to communication datasets across a wide variety of settings. This research is the first study designed to capture home hospice nurse-caregiver communication, a highly understudied location and type of communication event. We present a detailed example protocol encompassing data collection in the home environment, large-scale, multi-site secure data management, the development of theoretically-based communication coding, and strategies for preventing coder drift and ensuring reliability of analyses. Although each of these challenges have the potential to undermine the utility of the data, reliability between coders is often the only issue consistently reported and addressed in the literature. Overall, our approach demonstrates rigor and provides a “how-to” example for managing large, digitally-recorded data sets from collection through analysis. These strategies can inform other large-scale health communication research.

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Section: Challenge: Developing Coding Systems Using a Conceptual Framsupporting

confidence: 85%

Addressing Methodological Challenges in Large Communication Data Sets: Collecting and Coding Longitudinal Interactions in Home Hospice Cancer Care

Reblin

Clayton

John

et al. 2015

Health Communication

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“…To ensure that we adequately tailored the intervention to meet the needs of hospice caregivers, we initially conducted targeted interviews and focus groups with former hospice caregivers and hospice staff to identify key content areas. 21 The manualized intervention was delivered by a Master's level counselor who received training in both the content of the intervention and the process of delivering the telephone intervention. Study fidelity and quality assurance were maintained through standardized oversight of intervention delivery.…”

Section: The Caregiver Life Line Telephone Counseling Interventionmentioning

confidence: 99%

Feasibility of a Telephone-Based Counseling Program for Informal Caregivers of Hospice Patients

Kilbourn

Costenaro

Madore

et al. 2011

Journal of Palliative Medicine

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“…This suggests that previous research on caregiver needs (Bee et al, 2009; Kutner et al, 2009; Newton et al, 2002) has not been lost on hospice nurses; they make an effort to attend to supporting caregivers across appropriate domains.…”

Section: Discussionmentioning

confidence: 99%

“…In home hospice care, family caregivers provide the majority of care with support from hospice nurses who also coordinate hospice interdisciplinary team services (Berry & Griffie, 2010; Coyle, 2010; Egan City & Labyak, 2010). Though often a successful model, caregivers nonetheless report having unmet needs related to support for inhome care (Bee, Barnes, & Luker, 2009; Kutner et al, 2009; Newton, Bell, Lambert, & Fearing, 2002). If a caregiver has unmet needs and is in turn unable to effectively navigate the demands of care, both patient and caregiver health may suffer.…”

Section: Introductionmentioning

confidence: 99%

Social support needs: Discordance between home hospice nurses and former family caregivers

et al. 2014

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Objective:The two goals of our study were to (1) identify which of five types of social support (Informational, Esteem, Emotional, Tangible, Belonging) are most cited by hospice nurses and family caregivers and (2) determine the match in perception of support needs.Method:As part of a larger multiphase project, focus groups were conducted with former family caregivers and hospice nurses to discuss their experiences of home hospice care and to gather their opinions on the important issues involved in that care. Transcripts of focus group discussions were coded for support type (Informational, Esteem, Emotional, Tangible, Belonging) based on definitions from the literature. Nurse and caregiver data were compared to assess for potential match.Results:Analysis of coded data suggested that nurses see different types of support to be needed in equal measure across their caseloads, while caregivers expressed priorities for some types of support. Illustrative examples of each type of support are provided and discussed.Significance of Results:Because matching support provided with the type of support desired has been linked to improved physical and psychological outcomes, it is important to focus on this match in healthcare populations particularly vulnerable to psychological stress, including family caregivers of home hospice patients. This research has implications for interventions to match support provision to caregiver needs, or for education for home hospice providers to ensure that they are not only sensitive to the possibility of a broad range of needs but also to the necessity to tailor care to those needs.

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Support Needs of Informal Hospice Caregivers: A Qualitative Study

Cited by 33 publications

References 18 publications

Addressing Methodological Challenges in Large Communication Data Sets: Collecting and Coding Longitudinal Interactions in Home Hospice Cancer Care

Addressing Methodological Challenges in Large Communication Data Sets: Collecting and Coding Longitudinal Interactions in Home Hospice Cancer Care

Feasibility of a Telephone-Based Counseling Program for Informal Caregivers of Hospice Patients

Social support needs: Discordance between home hospice nurses and former family caregivers

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