Margaret L Longacre1, Marcin Chwistek2, Molly Collins2, Michelle Odelberg1, Mark Siemon3, Cynthia Keleher3, Carolyn Y Fang4. 1. Department of Public Health, College of Health Sciences, Arcadia University, Glenside, PA. 2. Fox Chase Cancer Center, Supportive Oncology and Palliative Care Program, Philadelphia, PA. 3. Fox Chase Cancer Center, Web Technologies Department, Philadelphia, PA. 4. Fox Chase Cancer Center, Cancer Prevention and Control Program, Philadelphia, PA.
Abstract
Background: Despite recommendations and policies to integrate family caregivers into U.S. healthcare settings, caregivers are not systematically involved. Thus, we developed an Integrated Caregiver Patient-Portal system that (1) allows a patient to identify their primary caregiver and their communication preferences; (2) connects the caregiver to a unique portal page to indicate their needs; and 3) informs the care team of dyad responses to aid in integrating the caregiver. Objective: This formative research explored palliative care clinicians' perceptions of the system to inform refinements before usability testing. Methods: We conducted two focus groups with palliative care clinicians (N=11) at an NCI-designated cancer center. Transcripts were analyzed using an integrated approach to specify system benefits and concerns. Results: The most referenced benefits included: Learning information that they might not have known without the system; giving caregivers a voice or a way to express needs; and supporting an ideal model of care. Top concerns included lacking capacity to respond; needing to clarify clinician roles and expertise in responding to caregivers' needs; and ensuring ongoing system adaptability. Conclusions: The clinicians' feedback resulted in revisions including: (1) modifying the caregiver questions; (2) integrating social workers in the response; and (3) adding a text-based report to the care team. Implications for Practice: This formative research provided valuable feedback for portal development, and also contributes more broadly to recommendations related to integrating caregivers in healthcare. Foundational: This research provides practical and logistical relevance to the discussion on how to integrate caregivers into clinical care.
Background: Despite recommendations and policies to integrate family caregivers into U.S. healthcare settings, caregivers are not systematically involved. Thus, we developed an Integrated Caregiver Patient-Portal system that (1) allows a patient to identify their primary caregiver and their communication preferences; (2) connects the caregiver to a unique portal page to indicate their needs; and 3) informs the care team of dyad responses to aid in integrating the caregiver. Objective: This formative research explored palliative care clinicians' perceptions of the system to inform refinements before usability testing. Methods: We conducted two focus groups with palliative care clinicians (N=11) at an NCI-designated cancer center. Transcripts were analyzed using an integrated approach to specify system benefits and concerns. Results: The most referenced benefits included: Learning information that they might not have known without the system; giving caregivers a voice or a way to express needs; and supporting an ideal model of care. Top concerns included lacking capacity to respond; needing to clarify clinician roles and expertise in responding to caregivers' needs; and ensuring ongoing system adaptability. Conclusions: The clinicians' feedback resulted in revisions including: (1) modifying the caregiver questions; (2) integrating social workers in the response; and (3) adding a text-based report to the care team. Implications for Practice: This formative research provided valuable feedback for portal development, and also contributes more broadly to recommendations related to integrating caregivers in healthcare. Foundational: This research provides practical and logistical relevance to the discussion on how to integrate caregivers into clinical care.
Authors: Jennifer L Wolff; Yue Guan; Cynthia M Boyd; Judith Vick; Halima Amjad; David L Roth; Laura N Gitlin; Debra L Roter Journal: Patient Educ Couns Date: 2016-10-25
Authors: Margaret L Longacre; Allison J Applebaum; Joanne S Buzaglo; Melissa F Miller; Mitch Golant; Julia H Rowland; Barbara Given; Bonnie Dockham; Laurel Northouse Journal: Transl Behav Med Date: 2018-03-01 Impact factor: 3.046
Authors: Chandylen L Nightingale; Katherine R Sterba; Laurie E McLouth; Erin E Kent; Emily V Dressler; Alexandra Dest; Anna C Snavely; Christian S Adonizio; Mark Wojtowicz; Heather B Neuman; Anne E Kazak; Ruth C Carlos; Matthew F Hudson; Joseph M Unger; Charles S Kamen; Kathryn E Weaver Journal: Cancer Date: 2020-11-02 Impact factor: 6.860