Cited by 66Palliative Care and End-of-Life IssuesPalliative and Oncologic CareNursing care and research

Adapting an Early Palliative Care Intervention to Family Caregivers of Persons With Advanced Cancer in the Rural Deep South: A Qualitative Formative Evaluation

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Dionne-Odom, J. Nicholas, Taylor, Richard, Rocque, Gabrielle, Chambless, Carol, Ramsey, Thomas, Azuero, Andres, Ivankova, Nataliya, Martin, Michelle Y. +1 more·2018·Journal of Pain and Symptom Management

Abstract

Context There is a scarcity of early palliative care interventions to support family caregivers of persons with advanced cancer living in the rural Southern U.S. Objective The objective of this study was to adapt the content, format, and delivery of a six session, palliative care, telehealth intervention with monthly follow-up for rural family caregivers to enhance their own self-care and caregiving skills. Methods Qualitative formative evaluation consisting of one-on-one, semistructured interviews with rural-dwelling persons with metastatic cancer (n = 18), their primary family caregiver (n = 20), and lay patient navigators (n = 26) were conducted to elicit feedback on a family caregiver intervention outline based on published evidence-based interventions. Transcribed interviews were analyzed using a thematic analysis approach. Coinvestigators reviewed and refined preliminary themes. Results Participants recommended that intervention topical content be flexible and has an adaptable format based on continuous needs assessment. Sessions should be 20 minutes long at minimum, and additional sessions should be offered if requested. Faith and spirituality is essential to address but should not be an overarching intervention theme. Content needs to be communicated in simple language. Intervention delivery via telephone is acceptable, but face-to-face contact is desired to establish relationships. Other Internet-based technologies (e.g., video-conferencing) could be helpful, but many rural dwellers may not be technology savvy or have Internet access. Most lay navigators believed they could lead the intervention with additional training, protocols for professional referral, and supervision by specialty-trained palliative care clinicians. Conclusions A potentially scalable palliative care intervention is being adapted for family caregivers of rural-dwelling persons with advanced cancer and will undergo piloting in a small-scale randomized controlled trial.

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  • The inclusion of African American and rural-dwelling participants increases confidence that the study results are applicable beyond predominantly urban and non-Hispanic White samples.

    “The inclusion of these groups increases confidence that the study results are applicable beyond predominantly urban and non-Hispanic White samples that characterize much of the existing literature.11,44”

    From Palliative Care Coaching for Family Caregivers of Patients With Advanced Cancer (2026) · cites this paper as [11]

    The Discussion (page unavailable) says caregiver interventions have had problems including rural-dwellers and minorities, supporting the comparison with less-represented groups. It does not establish that existing samples are predominantly urban and non-Hispanic White or that including these groups increases confidence in the applicability of the citing study’s results. It also cautions that this study’s findings may not transfer to other rural populations. (LLM, conf=0.78)

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  • There has been a lack of culturally responsive interventions for historically underresourced groups of family caregivers of patients with advanced cancer, namely African American and rural-dwelling individuals.

    “There has been a lack of culturally responsive interventions for historically underresourced groups of family caregivers of patients with advanced cancer, namely African American and rural-dwelling individuals.2,11”

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  1. [2]Institute of Medicine Retooling for an Aging America: Building the Health Care Workforce Washington, DC 2008 25009893
  2. [30]McMillan S Small B Weitzner M Impact of coping skills intervention with family caregivers of hospice patients with cancer Cancer 2005 106 1 214 222 16329131
  3. [37]McMillan SC Small BJ Weitzner M Impact of coping skills intervention with family caregivers of hospice patients with cancer Cancer 2005 106 1 214 222 16329131
  4. [38]McMillan SC Small BJ Using the COPE intervention for family caregivers to improve symptoms of hospice homecare patients: a clinical trial Oncol Nurs Forum 2007 34 2 313 321 17573295
  5. [45]Muran J Barber J The Therapeutic Alliance: An Evidence-Based Guide to Practice New York, NY The Guilford Press 2010

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Authors
Dionne-Odom, J. N., Taylor, R., Rocque, G., Chambless, C., Ramsey, T., Azuero, A., Ivankova, N., Martin, M. Y., & Bakitas, M. A.
Affiliations
  • University of Alabama at Birmingham (US)
  • University of Tennessee Health Science Center (US)
Corresponding author
Dionne-Odom, J. Nicholas
Venue
Journal of Pain and Symptom Management
Publisher
Elsevier BV
Published
2018-06
Volume
55
Issue
6
Pages
1519-1530
ISSN
0885-3924 (ISSN-L)
OpenAlex
W2788138475
Cited by
66
References
46
Citations by year
2026: 9 · 2025: 9 · 2024: 7 · 2023: 6 · 2022: 15 · 2021: 10 · 2020: 5 · 2019: 5
FWCI
4.61
Type
journal article
Language
en
Open access
Locations
  • Journal of Pain and Symptom Management (publishedVersion)
  • PubMed (publishedVersion)
  • Europe PMC (PubMed Central) (acceptedVersion)
  • PubMed Central (acceptedVersion)
Funders
National Institute of Nursing Research (K99NR015903, R01NR013665)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
Keywords
early palliative care, family caregivers, advanced cancer, metastatic cancer, rural health, telehealth intervention, intervention adaptation, caregiver self-care, caregiver skills, faith and spirituality, rural Southern United States
MeSH terms
Adult, Aged, Aged, 80 and over, Family, Female, Follow-Up Studies, Health Personnel, Humans, Interviews as Topic, Male, Middle Aged, Neoplasms, Palliative Care, Rural Population, Caregivers, Telemedicine, Internet, Spirituality, Qualitative Research

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