scholarly journals How Family Caregivers Assist with Upstream Healthcare Decision-Making by Community-Dwelling Persons with Advanced Cancer: A Qualitative Study (S821)

2019 ◽  
Vol 57 (2) ◽  
pp. 492-493
Author(s):  
James Dionne-Odom ◽  
Deborah Ejem ◽  
Rachel Wells ◽  
Amber Barnato ◽  
Richard Taylor ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Community Dwelling ◽  
Healthcare Decision ◽  
Healthcare Decision Making

How family caregivers assist with upstream health care decision making by community-dwelling persons with advanced cancer: A qualitative study.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 13-13
Author(s):  
J Nicholas Dionne-Odom ◽  
Deborah Ejem ◽  
Rachel Wells ◽  
Amber Barnato ◽  
Richard Taylor ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Metastatic Cancer ◽  
Family Members ◽  
Community Dwelling ◽  
Healthcare Decision ◽  
Healthcare Decision Making ◽  
Care Decision

13 Background: In the palliative care context, the family caregiver role in patients’ healthcare decision-making has focused on being a surrogate decision-maker at end of life. Less is known about family caregiver’s role in supporting upstream patient decision-making in advanced cancer. Methods: Qualitative descriptive study consisting of one-on-one, semi-structured interviews with persons with metastatic cancer and their family caregivers. We elicited family members’ perspectives on how they assist their relatives with any current and prospective healthcare decisions. Transcribed interviews were analyzed using a thematic analysis approach. Co-investigators reviewed and refined themes. Results: Caregivers (n = 20) averaged 56 years of age and were mostly female (95%), White (85%), and the patient’s partner/spouse (70%). Patients (n = 18) averaged 58 years of age and were mostly male (67%) in “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ decision-making were: 1) seeking information about the cancer, its trajectory, and different treatments options; 2) identifying treatment and disease decision points, including decisions about seeking emergent care; 3) ensuring family members have a common understanding of the patient’s plan of care; 4) initiating and facilitating conversations with patients about coping, values, beliefs, and “what if” scenarios about current and potential future health states and treatments; 5) implementing choices (e.g., providing transportation) and addressing “spillover” decisions (e.g., work arrangements) resulting from medical treatment choices; and 6) making upstream healthcare decisions on behalf of patients who preferred to have decisions made by their family caregivers. Conclusions: These data highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early palliative care decision support interventions for family caregivers.

scholarly journals How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study

PLoS ONE ◽  
2019 ◽  
Vol 14 (3) ◽  
pp. e0212967 ◽  
Author(s):  
J. Nicholas Dionne-Odom ◽  
Deborah Ejem ◽  
Rachel Wells ◽  
Amber E. Barnato ◽  
Richard A. Taylor ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Healthcare Decision ◽  
Healthcare Decision Making

scholarly journals Adapting ENABLE for patients with advanced cancer and their family caregivers in Singapore: a qualitative formative evaluation

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Grace Meijuan Yang ◽  
J. Nicholas Dionne-Odom ◽  
Yi Han Foo ◽  
Ariel Hui Mei Chung ◽  
Nur Haidah Ahmad Kamal ◽  
...  
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Cancer Diagnosis ◽  
Formative Evaluation ◽  
Complementary Therapy ◽  
Healthcare Decision ◽  
Structured Interviews ◽  
Face To Face ◽  
Healthcare Decision Making

Abstract Background ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, advance care planning, symptom management and self-care. The aim was to evaluate the cultural acceptability of ENABLE among patients with advanced cancer and their caregivers in Singapore and identify modifications for an adapted ENABLE-SG model. Methods Qualitative formative evaluation with a thematic analysis approach in two hospitals in Singapore, involving patients (n = 10), family caregivers (n = 11) and healthcare professionals (n = 10) who care for patients with advanced cancer. Semi-structured interviews were conducted to explore (i) the main needs and challenges facing individuals with advanced cancer and their family caregivers; (ii) patient involvement in healthcare decision making; and (iii) content and delivery of ENABLE. Results While physical needs were largely well met, participants expressed that psychosocial care was delivered too late in the illness trajectory. Healthcare decision making approaches varied from a patient-centred shared decision-making model to a family-centred model where patients may not know their cancer diagnosis and prognosis. The content was considered to be relevant, comprehensive and practical; financial assistance, adjustment to body image, and evaluation of complementary therapy were also recommended. Face-to-face rather than telephone sessions were preferred to facilitate rapport building. Conclusions ENABLE was broadly acceptable with some modifications, including adjusting the content to ensure it can be delivered even if the patient is not fully aware of cancer diagnosis and delivering the first session face-to-face with flexibility for subsequent sessions.

How information about other people's personal experiences can help with healthcare decision-making: A qualitative study

2011 ◽  
Vol 85 (3) ◽  
pp. e291-e298 ◽  
Author(s):  
Vikki Ann Entwistle ◽  
Emma F. France ◽  
Sally Wyke ◽  
Ruth Jepson ◽  
Kate Hunt ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Healthcare Decision ◽  
Healthcare Decision Making ◽  
Personal Experiences

scholarly journals Nursing Home Staff’s Perceptions of Healthcare Decision Making for Unbefriended Residents

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 384-384
Author(s):  
Hyejin Kim ◽  
Molly Perkins ◽  
Thaddeus Pope ◽  
Patricia Comer ◽  
Mi-Kyung Song
Keyword(s):  
Decision Making ◽  
Geographic Area ◽  
Care Physician ◽  
Healthcare Decision ◽  
Do Not Resuscitate ◽  
Best Interest ◽  
Care Plans ◽  
Course Of Action ◽  
Healthcare Decision Making ◽  
Facility Level

Abstract ‘Unbefriended’ adults are those who lack decision-making capacity and have no surrogates or advance care plans. Little data exist on nursing homes (NHs)’ healthcare decision-making practices for unbefriended residents. This study aimed to describe NH staff’s perceptions of healthcare decision making on behalf of unbefriended residents. Sixty-six staff including administrators, physicians, nurses, and social workers from three NHs in one geographic area of Georgia, USA participated in a 31-item survey. Their responses were analyzed using descriptive statistics and conventional content analysis. Of 66 participants, eleven had been involved in healthcare decision-making for unbefriended residents. The most common decision was do-not-resuscitate orders. Decisions primarily were made by relying on the resident’s primary care physician and/or discussing within a facility interdisciplinary team. Key considerations in the decision-making process included “evidence that the resident would not have wanted further treatment” and the perception that “further treatment would not be in the resident’s best interest”. Compared with decision making for residents with surrogates, participants perceived decision making for unbefriended residents to be equally-more difficult. Key barriers to making decisions included uncertainty regarding what the resident would have wanted in the given situation and concerns regarding the ethically and legally right course of action. Facilitators (reported by 52 participants) included some information/knowledge about the resident, an understanding regarding decision-making-related law/policy, and facility-level support. The findings highlight the complexity and difficulty of healthcare decision making for unbefriended residents and suggest more discussions among all key stakeholders to develop practical strategies to support decision-making practices in NHs.

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