scholarly journals The centrality of disclosure decisions to the illness experience for youth with chronic conditions: A qualitative study

2020 ◽  
pp. 135910532096224
Author(s):  
Roberta Lynn Woodgate ◽  
Pauline Tennent ◽  
Sarah Barriage ◽  
Nicole Legras
Keyword(s):  
Chronic Illness ◽  
Qualitative Study ◽  
Chronic Conditions ◽  
Clinical Care ◽  
Constructivist Grounded Theory ◽  
Illness Experience ◽  
Healthcare Decision ◽  
Categorical Approach ◽  
Healthcare Decision Making ◽  
Disclosure Decisions

The aim of this paper is to illuminate findings of disclosure experiences for youth living with chronic illness using a non-categorical approach. The findings were derived from a larger qualitative study framed by social constructivist grounded theory that sought to understand youth’s involvement in healthcare decision-making in the context of chronic illness. Fifty-four youth participated in the study, ranging from 9 to 24 years. Three main themes representing the youth’s perspectives and experiences of disclosing chronic illness were identified: (1) disclosure is central to the illness experience; (2) spectrum of disclosure; and (3) navigating others’ reactions to disclosure. The findings reinforce that more emphasis on decisions related to disclosing illness in research and clinical care for youth with chronic conditions is warranted.

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 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 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.

scholarly journals Innovative Strategies to Facilitate Patient-Centered Research in Multiple Chronic Conditions

2021 ◽  
Vol 10 (10) ◽  
pp. 2112
Author(s):  
Tullika Garg ◽  
Courtney A. Polenick ◽  
Nancy Schoenborn ◽  
Jane Jih ◽  
Alexandra Hajduk ◽  
...  
Keyword(s):  
Chronic Conditions ◽  
Clinical Care ◽  
Intervention Development ◽  
Healthcare Services ◽  
Multiple Chronic Conditions ◽  
Patient Centered ◽  
Older Americans ◽  
Innovative Strategies ◽  
Department Of Health ◽  
Innovative Methods

Multiple chronic conditions (MCC) are one of today’s most pressing healthcare concerns, affecting 25% of all Americans and 75% of older Americans. Clinical care for individuals with MCC is often complex, condition-centric, and poorly coordinated across multiple specialties and healthcare services. There is an urgent need for innovative patient-centered research and intervention development to address the unique needs of the growing population of individuals with MCC. In this commentary, we describe innovative methods and strategies to conduct patient-centered MCC research guided by the goals and objectives in the Department of Health and Human Services MCC Strategic Framework. We describe methods to (1) increase the external validity of trials for individuals with MCC; (2) study MCC epidemiology; (3) engage clinicians, communities, and patients into MCC research; and (4) address health equity to eliminate disparities.

Children’s assent within clinical care: A concept analysis

2020 ◽  
pp. 136749352097630
Author(s):  
Marjorie Montreuil ◽  
Justine Fortin ◽  
Eric Racine
Keyword(s):  
Clinical Care ◽  
Concept Analysis ◽  
Process Of Care ◽  
Deliberative Process ◽  
Ethical Implications ◽  
Rights Of The Child ◽  
Healthcare Decision Making ◽  
Psychological Harm ◽  
Practical Implications ◽  
Made In

Seeking children’s assent has been put forward as a way to foster children’s involvement in the healthcare decision-making process. However, the functions of the concept of assent within clinical care are manifold, and methods used to recognize children’s capacities and promote their involvement in their care remain debated. We performed an instrumentalist concept analysis of assent, with 58 included articles. Final themes were jointly identified through a deliberative process. Two distinct perspectives of assent were predominant: as an affirmative agreement for a specific decision and as part of a continuous, interactive process of care. Differing standards were provided as to how and when to apply the concept of assent. The concept of dissent was largely omitted from conceptions of assent, especially in situations for which children’s refusal would lead to severe health consequences. Ethical implications included fostering autonomy, reducing physical/psychological harm to the child, respecting the child as a human being, and fulfilling the universal rights of the child. There remain important gaps in the theory of assent and its desirable and possible practical implications. Practical standards are largely missing, and evidence supporting the claims made in the literature requires further investigation.

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