Abstract
Context
Family caregivers are essential to home hospice care for patients with advanced cancer,
including reporting patient symptoms to hospice providers for follow-up. Hospice caregiving
can also impact personal well-being.
Objectives
1) Assess home hospice caregivers’ use of prospective, longitudinal audio diaries
tracking patient and caregiver wellbeing; 2) Explore how patient-focused vs. caregiver-focused
diary prompts perform; 3) Examine the prevalence of interactive voice response (IVR)-tracked
symptoms and whether diaries revealed additional symptoms.
Methods
Caregivers (N=102) were asked to report patient and caregiver symptoms via daily IVR calls and could
record optional diaries responding to patient-focused or caregiver-focused prompts.
Diaries were transcribed, classified by presence/absence of new information, and compared
by prompt type. Content coding for IVR-tracked symptoms and inductive coding for additional
symptoms were summarized by frequency counts and exemplary quotes.
Results
Sixty-nine percent of participants (n=70) recorded diaries, and of these 72.86% (n=51) recorded ≥ one new-information diary. The median recording length was 53.00 seconds
(SD=53.36). Participants responding to the caregiver-focused prompt (n=33) recorded more diaries than those in the patient-focused group (n=37; U=437.500, P=0.04. Most prevalent IVR-tracked symptoms were patient fatigue/weakness (26.54% of symptoms
mentioned) and pain (23.08%), and caregiver anxiety/nervousness (47.51%) and fatigue
(22.10%). The most prevalent additional symptoms were patient increasing sleepiness/sleeping
(26.32%) and breathing difficulties (24.32%), and negative caregiver emotions (e.g.,
guilt, resentment, anger; 29.17%).
Conclusion
Prospective audio diaries offer a viable avenue for communicating symptoms and support
needs. Future research will focus on leveraging longitudinal data for developing focused
and tailored caregiver support interventions.
Key Words
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References
- Family caregiver reports of their own and patient symptoms in cancer home hospice approaching end-of-life.Am J Hosp Palliat Care. 2022; https://doi.org/10.1177/10499091221108119
- Current advances in palliative & hospice care: problems and needs of relatives and family caregivers during palliative and hospice care—An overview of current literature.Med Sci. 2019; 7: 43https://doi.org/10.3390/medsci7030043
- A review of the complex role of family caregivers as health team members and second-order patients.Healthcare. 2019; 7: 63https://doi.org/10.3390/healthcare7020063
- Family caregiving at the end of life and hospice use: a national study of medicare beneficiaries.J Am Geriatr Soc. 2020; 68: 2288-2296https://doi.org/10.1111/jgs.16648
Glajchen, M. Family caregivers in palliative care and hospice: Minimising burden amd maximizing support. Palliative Care Res Series, 2016. Available at:https://www.nhpco.org/wp-content/uploads/2019/04/PalliativeCare_Family_Caregivers.pdf. Accessed December 14, 2022.
- Population-based profile of mental health and support service need among family caregivers of adults with cancer.J Oncol Pract. 2019; 15: e122-ee31https://doi.org/10.1200/JOP.18.00522
- Informal caregiving of hospice patients.J Palliat Med. 2014; 17: 845-856https://doi.org/10.1089/jpm.2013.0196
- Prevalence and determinants of depression in caregivers of cancer patients: a systematic review and meta-analysis.Medicine (Baltimore). 2018; 97: e11863https://doi.org/10.1097/MD.0000000000011863
- A systematic review of interventions for family caregivers who care for patients with advanced cancer at home.Patient Educ Couns. 2020; 103: 1518-1530https://doi.org/10.1016/j.pec.2020.03.012
- Trajectories of end of life: a systematic review.J Gerontol B Psychol Sci Soc Sci. 2018; 73: 564-572https://doi.org/10.1093/geronb/gbx093
National Hospice and Palliative Care Organization. Hospice facts and figures, 2021 Edition. Alexandria, VA: National Hospice and Palliative Care Organization. 2021. Available at: http://www.nhpco.org/factsfigures. Accessed December 14, 2022.
- Methodological considerations in the use of audio diaries in work psychology: adding to the qualitative toolkit.J Occup Organ Psychol. 2016; 89: 396-419https://doi.org/10.1111/joop.12132
- “A true human interaction”: comparison of family caregiver and hospice nurse perspectives on needs of family hospice caregivers.J Hos Palliat Nurs. 2014; 16: 282-290https://doi.org/10.1097/NJH.0000000000000066
- Psychological morbidity in family caregivers of people living with terminal cancer: prevalence and predictors.Palliat Support Care. 2019; 17: 286-293https://doi.org/10.1017/S1478951518000044
- Addressing the needs of female spousal caregivers through journaling and a time-use log.Am J Occup Ther. 2019; 73https://doi.org/10.5014/ajot.2019.73S1-PO2033
- Improving cancer caregivers’ emotion regulation and supportive message characteristics: results of a randomized controlled expressive writing intervention.Commun Monogr. 2018; 86: 1-22https://doi.org/10.1080/03637751.2018.1521983
- Capturing emotion with audio diaries.Qual Res. 2019; 20: 549-564https://doi.org/10.1177/1468794119885037
- Evaluating the audio-diary method in qualitative research.Qual Res J. 2015; 15: 20-34https://doi.org/10.1108/QRJ-04-2014-0014
- Solicited audio diaries in longitudinal narrative research: a view from inside.Qual Res. 2009; 9: 81-103https://doi.org/10.1177/1468794108098032
- Audio diaries: A creative research method for higher education studies in the digital age.in: Cao X Henderson EF Exploring diary methods in higher education research: Opportunities, choices and challenges. Routledge, London2021 (Chapter 3)
- Automated home monitoring and management of patient-reported symptoms during chemotherapy: results of the symptom care at home RCT.Cancer Med. 2017; 6: 537-546https://doi.org/10.1002/cam4.1002
- Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial.J Clin Oncol. 2016; 34: 557-565https://doi.org/10.1200/JCO.2015.63.0830
- Patient and caregiver symptom trajectory: the last 2 months of cancer home hospice.Innov Aging. 2021; 5: 797https://doi.org/10.1093/geroni/igab046.2939
- What contextual factors account for anxiety and depressed mood in hospice family caregivers?.Psychooncology. 2022; 31: 316-325https://doi.org/10.1002/pon.5816
- Automated monitoring of symptoms during ambulatory chemotherapy and oncology providers' use of the information: a randomized controlled clinical trial.Support Care Cancer. 2014; 22: 2343-2350https://doi.org/10.1007/s00520-014-2216-1
QSR International Pty Ltd. NVivo (released in March 2020). 2020. Available at: https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home. Accessed December 14, 2022.
- Coding in-depth semistructured interviews:Problems of unitization and intercoder reliability and agreement.Sociol Methods Res. 2013; 42: 294-320https://doi.org/10.1177/0049124113500475
- What do patients and family-caregivers value from hospice care? A systematic mixed studies review.BMC Palliat Care. 2019; 18: 18https://doi.org/10.1186/s12904-019-0401-1
- What is narrative-based medicine? Narrative-based medicine 1.Can Fam Physician. 2018; 64: 176-180
Article info
Publication history
Published online: December 06, 2022
Accepted:
November 26,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
