Patient perspectives on states worse than death: A qualitative study with implications for patient-centered outcomes and values elicitation

2021 ◽  
pp. 026921632110585
Author(s):  
Catherine L Auriemma ◽  
Helen O’Donnell ◽  
Julia Jones ◽  
Zoe Barbati ◽  
Eda Akpek ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Structured Interviews ◽  
Patient Centered ◽  
Medical Decisions ◽  
Health States ◽  
Qualitative Approaches ◽  
Perceived Burden ◽  
Academic Hospitals ◽  
Seriously Ill Patients ◽  
Family Centered

Background: Seriously ill patients rate several health outcomes as states worse than death. It is unclear what factors underlie such valuations, and whether consideration of such states is useful when making medical decisions. Aim: We sought to (1) use qualitative approaches to identify states worse than death, (2) identify attributes common to such undesirable health states, and (3) determine how participants might use information on these states in making medical decisions. Design: Qualitative study of semi-structured interviews utilizing content analysis with constant comparison techniques. Setting, Participants: We interviewed adults age 65 or older with serious illnesses after discharge home from one of two urban, academic hospitals. Eligible patients were purposively sampled to achieve balance in gender and race. Results: Of 29 participants, 15 (52%) were female, and 15 were white (52%), with a median age of 72 (interquartile range 69, 75). Various physical, cognitive, and social impairments were identified as states worse than death. The most commonly reported attributes underlying states worse than death were perceived burden on loved ones and inability to maintain human connection. Patients believed information on states worse than death must be individualized, and were concerned their opinions could change with time and fluctuations in health status. Conclusions: Common factors underlying undesirable states suggest that for care to be patient-centered it must also be family-centered. Patients’ views on using states worse than death in decision making highlight barriers to using avoidance of such states as a quality measure, but also suggest opportunities for eliciting patients’ values.

Conceptions of Family-Centered Medical Decisionmaking and Their Difficulties

2003 ◽  
Vol 12 (2) ◽  
pp. 196-200 ◽  
Author(s):  
INSOO HYUN
Keyword(s):  
Patient Autonomy ◽  
Family Members ◽  
Patient Centered ◽  
Medical Decisions ◽  
Competent Patient ◽  
Legitimate Interest ◽  
The Family ◽  
Related Line ◽  
Family Centered ◽  
Decisional Authority

Over the past decade or so, the predominant patient-centered ethos in American bioethics has come under attack by critics who claim that it is morally deficient in certain respects, particularly when viewed in the context of acute-care decisionmaking. One line of criticism has been that the current ethic of patient autonomy gives an individual competent patient far too much decisional authority over the terms of his own treatment so that the patient is at complete liberty to neglect the ways in which his medical decisions can drastically and negatively affect the lives of other family members. Given that family members must help shoulder the financial, emotional, and rehabilitative burdens involved in the patient's care, it has been argued that they too have a legitimate interest in choosing what sort of medical treatment the patient eventually receives. Another closely related line of criticism is that the prevailing focus on patient autonomy gives short shrift to the moral significance of the family as a genuine community. Echoing a view of the person advanced by most communitarian political theorists, some commentators have argued that the patient comes to the clinic so thoroughly embedded in a complex web of familial relationships and obligations that it does not make sense to identify him as the only person in the family to make decisions about treatment.

scholarly journals 301 Older Farmers' Experiences of Musculoskeletal Disorders

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
John Cunningham ◽  
Austin Kerin ◽  
Rose Galvin ◽  
Katie Robinson
Keyword(s):  
Qualitative Study ◽  
Musculoskeletal Disorders ◽  
Future Research ◽  
Full Time ◽  
Structured Interviews ◽  
Patient Centered ◽  
Part Time ◽  
Health Promoting ◽  
Time Basis ◽  
Older Farmers

Abstract Background Almost a third (n=41,000) of all Irish farm holders are aged 65 years or older. Older farmers are vulnerable to Musculoskeletal Disorders (MSD’s) both by virtue of the nature of their work and their age. MSD’s are a known risk factor for workplace accidents and farming is the highest risk occupation in Ireland. This study aimed to explore older farmers’ experiences of living with and accessing healthcare for MSD’s. Methods A qualitative study design employing semi-structured interviews was employed. Nine Irish farmers aged 65 years and over with current or previous experience of MSD's were recruited. All participants continued to farm on either a full-time or part-time basis. Data were analysed using thematic analysis. Results Four themes describing older farmers' experiences of MSD’s and healthcare were identified; (1) acceptance of MSD’s as inevitable (2) biomechanical and biological beliefs about MSD’s (3) resilience and a commitment to continuing work in response to MSD’s (4) scepticism and avoidance of healthcare. Conclusion To the best of our knowledge this is the first qualitative study of older Irish farmers’ experiences of MSD’s. Findings reveal that older farmer’s experiences differ significantly from those reported by other occupational groups. Commitment to continue working permeated the findings of this study and shaped older farmers' experiences and responses to MSD's. Older farmers accept MSD’s and pain as inevitable consequences of farming, and they respond to MSD’s with stoicism. Lack of healthcare provider knowledge about farming culture and practices contributes to older farmers' negative healthcare experiences and avoidance of healthcare. Given the prevalence of MSD’s in this population future research should focus on developing and evaluating appropriate health promoting and patient-centered interventions to support continued safe farming for older Irish farmers.

scholarly journals The nordic maintenance care program: patient experience of maintenance care—a qualitative study

2021 ◽  
Vol 29 (1) ◽  
Author(s):  
Jesper Hjertstrand ◽  
Per J. Palmgren ◽  
Iben Axén ◽  
Andreas Eklund
Keyword(s):  
Back Pain ◽  
Qualitative Study ◽  
Care Program ◽  
Management Plan ◽  
Care Plan ◽  
Maintenance Care ◽  
Structured Interviews ◽  
Patient Centered ◽  
The One ◽  
Patients Experience

Abstract Background Low back pain is one of the major causes of disability world-wide. Most back pain sufferers experience pain that is recurrent or persistent, making management of this condition a priority. In a series of previous studies, chiropractic maintenance care has been found to be an effective way of reducing the number of days with pain, particularly for patients with a certain psychological profile. However, little is known about patients’ experience of this kind of management plan. This study aimed to explore patient experiences and preferences by looking at barriers to and facilitators of engaging in and maintaining a care plan, and to contrast the data using psychological sub-groups. Methods In this qualitative study we performed semi-structured interviews with 24 patients who had previously participated in a Swedish trial evaluating maintenance care. They were purposefully selected to obtain richness, variation and breadth of data. The data were analyzed using inductive qualitative manifest and latent content analysis. We used the theory of planned behavior to deepen our understanding of the constructed themes. Results The analysis resulted in two overarching dimensions: “when maintenance care is of high value” and “when maintenance care is of low value”. Four factors were jointly identified as obstacles to maintenance care by patients in all the psychological subgroups. These factors were: Cost demanding, A sense of low value, Perceived as unavailable and Fear of treatment. The one factor seen as facilitating maintenance care by patients in all the subgroups was Care that is patient-centered. Conclusions The findings reveal a variance of both positive and negative experiences of MC in the psychological subgroups. These findings can deepen our understanding of how patients experience MC and can help clinicians to understand when patients might regard maintenance care as being of high value.

scholarly journals Opportunities and Challenges for Family-Centered Postpartum Care During the COVID-19 Pandemic: A Qualitative Study of Nurse Perspectives

2021 ◽  
Author(s):  
Katharine W. Buek ◽  
Molly O’Neil ◽  
Dorothy J. Mandell
Keyword(s):  
Health Care ◽  
Qualitative Study ◽  
Father Involvement ◽  
Nursing Practice ◽  
Care Practice ◽  
Perceived Benefits ◽  
Structured Interviews ◽  
Number Of Patients ◽  
Family Bonding ◽  
Family Centered

Abstract Background The global COVID-19 pandemic has forced the health care sector to make wide-ranging changes to protect patients as well as providers from the risk of infection. Many of these changes are likely to have greatest impact in contexts of care that employ family-centered models, including perinatal and maternity care. Research conducted in prenatal, childbirth and postpartum settings during the pandemic has shown that some of these restrictions have negatively impacted health care practice and outcomes, while others have been beneficial to both providers and patients. The present qualitative study aimed to understand what changes have occurred in postpartum nursing practice during the pandemic, and how these changes have affected nurses, women and families during their stay in the hospital following a new birth.MethodsStructured interviews were completed with 20 postpartum nurses from five hospitals across Texas. The interview protocol was designed to elicit information about changes to hospital policies in postpartum units during the pandemic, nurses’ attitudes about these changes, perceived benefits and challenges for performance of their duties, and perceived effects on patients and their families. Nurses were recruited for the study using a purposive sampling approach. Interviews were conducted by telephone and lasted approximately 30 to 45 minutes. Data were analyzed using a qualitative descriptive approach. ResultsParticipants reported that their hospitals placed restrictions on the number and mobility of support persons allowed to stay with the mother in the unit and prohibited all other visitation. Some challenges of these policies included reduced opportunities for hands-on learning and an increased number of patients opting for early discharge. Perceived benefits for nursing practice as well as patient outcomes included improved frequency and effectiveness of nurse-family communication, increased father involvement, and greater opportunities for maternal rest, breastfeeding, skin-to-skin care and family bonding.ConclusionsStudy findings suggests that some limitations on postpartum hospital visitation may achieve important, family-centered goals. Protected time for family-bonding, maternal rest, breastfeeding, father involvement and individualized education are critical to quality FCC. Research must examine which visitation policies maximize these benefits while preserving patient access to family and social support.

scholarly journals The Nordic Maintenance Care Program: Patient Experience of Maintenance Care - A Qualitative Study

2021 ◽  
Author(s):  
Jesper Hjertstrand ◽  
Per J Palmgren ◽  
Iben Axén ◽  
Andreas Eklund
Keyword(s):  
Back Pain ◽  
Qualitative Study ◽  
Care Program ◽  
Care Plan ◽  
Maintenance Care ◽  
Structured Interviews ◽  
Patient Centered ◽  
Negative Experiences ◽  
The One ◽  
Patients Experience

Abstract Background:Low back pain is one of the major causes of disability world-wide. Most back pain sufferers experience pain that is recurrent or persistent, making management of this condition a priority. In a series of previous studies, chiropractic maintenance care has been found to be an effective way of reducing the number of days with pain, particularly for patients with a certain psychological profile. However, little is known about patients’ experience of this kind of management plan.This study aimed to explore patient experiences and preferences by looking at barriers to and facilitators of engaging in and maintaining a care plan, and to contrast the data using psychological sub-groups.Methods:In this qualitative study we performed semi-structured interviews with 24 patients who had previously participated in a Swedish trial evaluating maintenance care. They were purposefully selected to obtain richness, variation and breadth of data. The data were analyzed using inductive qualitative manifest and latent content analysis. We used the theory of planned behavior to deepen our understanding of the constructed themes. Results:The analysis resulted in two overarching dimensions: “when maintenance care is of high value” and “when maintenance care is of low value”. Four factors were jointly identified as obstacles to maintenance care by patients in all the psychological subgroups. These factors were: Cost demanding, A sense of low value, Perceived as unavailable and Fear of treatment. The one factor seen as facilitating maintenance care by patients in all the subgroups was Care that is patient-centered.Conclusions:The findings reveal a variance of both positive and negative experiences of MC in the psychological subgroups. These findings can deepen our understanding of how patients experience MC and can help clinicians to understand when patients might regard maintenance care as being of high value.

scholarly journals A story half told: a qualitative study of medical students’ self-directed learning in the clinical setting

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Tzu-Hung Liu ◽  
Amy M. Sullivan
Keyword(s):  
Medical Students ◽  
Qualitative Study ◽  
Learning Strategies ◽  
Clinical Setting ◽  
Clinical Training ◽  
Student Experiences ◽  
Structured Interviews ◽  
Self Directed Learning ◽  
Patient Centered ◽  
Directed Learning

Abstract Background Medical educators have promoted self-directed learning (SDL) as an important means of enabling students to take responsibility for their own learning throughout their training and practice. While SDL has been well-studied in classroom settings, it remains a story half told: barriers to and facilitators of SDL in the clinical setting are not yet well described. The goals of this study were to explicate student experiences of SDL in their clinical training and to identify the roles that local social and cultural contexts play in shaping their experiences of SDL. Methods To understand students’ conceptualization and experiences of SDL in the clinical setting, we carried out a qualitative study with 15 medical students at Harvard Medical School. The semi-structured interviews were recorded and transcribed. Using an interpretivist approach, data were analyzed both deductively and inductively using the Framework method of content analysis. Results Participants described patient care activities as primary motivators for engagement in SDL in the clinical setting. Participants’ descriptions of SDL aligned with Knowles’ steps in SDL, with an additional step of consolidation of learning related to their patients’ diagnosis and management. Participants described using a range of cognitive, social-emotional, and peer learning strategies to enhance their SDL. Participants who described a growth mindset appeared to engage in SDL more easily. Learning environments that fostered SDL were those in which faculty and residents demonstrated an educational orientation, promoted psychological safety, and invited student engagement. Teams with perceived excessive work demands were perceived to be less supportive of SDL. Conclusions Our study enhances previous classroom-based models of SDL by providing specific, practical implications for both students and faculty in the clinical training setting. Participants described SDL in the clinical setting as patient-centered, and when effectively implemented, SDL appears to support a mastery rather than performance orientation. Our study paves the way for improving medical students’ clinical SDL and helping them become lifelong learners in the field of medicine.

A Qualitative Study of Family Experience With Hospitalization for Neonatal Abstinence Syndrome

2018 ◽  
pp. 113-119
Author(s):  
Emily C. Atwood ◽  
Grace Sollender ◽  
Erica Hsu ◽  
Christine Arsnow ◽  
Victoria Flanagan ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Iterative Process ◽  
Care Team ◽  
Neonatal Abstinence Syndrome ◽  
Family Centered Care ◽  
Abstinence Syndrome ◽  
Structured Interviews ◽  
Family Experience ◽  
Centered Care ◽  
Family Centered

BACKGROUND AND OBJECTIVES Although the incidence of neonatal abstinence syndrome (NAS) in the United States quintupled between 2000 and 2012, little is known about the family perspective of the hospital stay. We interviewed families to understand their experiences during the newborn hospitalization for NAS and to improve family-centered care. METHODS A multidisciplinary team from 3 hospital units composed open-ended interview questions based on a literature review, clinical experience, and an internal iterative process. Trained investigators conducted semi-structured interviews with 20 families of newborns with NAS at hospital discharge. Interviews were recorded and transcribed verbatim. Two investigators independently analyzed each transcript, identified themes via an inductive qualitative approach, and reached a consensus on each code. The research team sorted the themes into broader domains through an iterative process that required consensus of 4 team members. RESULTS Five domains of family experience were identified: parents’ desire for education about the course and treatment of NAS; parents valuing their role in the care team; quality of interactions with staff (supportive versus judgmental) and communication regarding clinical course; transfers between units and inconsistencies among providers; and external factors such as addiction recovery and economic limitations. CONCLUSIONS Families face many challenges during newborn hospitalization for NAS. Addressing parental needs through improved perinatal education, increased involvement in the care team, consistent care and communication, and minimized transitions in care could improve the NAS hospital experience. The results of this qualitative study may allow for improvements in family-centered care of infants with NAS.

scholarly journals Ethical Issues in the Design and Conduct of Pragmatic Cluster Randomized Trials in Hemodialysis Care: An Interview Study With Key Stakeholders

2020 ◽  
Vol 7 ◽  
pp. 205435812096411
Author(s):  
Stuart G. Nicholls ◽  
Kelly Carroll ◽  
Charles Weijer ◽  
Cory E. Goldstein ◽  
Jamie Brehaut ◽  
...  
Keyword(s):  
North America ◽  
Qualitative Study ◽  
Randomized Trials ◽  
Ethical Issues ◽  
Population Level ◽  
Cluster Randomized Trials ◽  
Structured Interviews ◽  
Patient Centered ◽  
Data Infrastructure ◽  
Cluster Randomized

Background: Pragmatic cluster randomized trials (CRTs) offer an opportunity to improve health care by answering important questions about the comparative effectiveness of treatments using a trial design that can be embedded in routine care. There is a lack of empirical research that addresses ethical issues generated by pragmatic CRTs in hemodialysis. Objective: To identify stakeholder perceptions of ethical issues in pragmatic CRTs conducted in hemodialysis. Design: Qualitative study using semi-structured interviews. Setting: In-person or telephone interviews with an international group of stakeholders. Participants: Stakeholders (clinical investigators, methodologists, ethicists and research ethics committee members, and other knowledge users) who had been involved in the design or conduct of a pragmatic individual patient or cluster randomized trial in hemodialysis, or their role would require them to review and evaluate pragmatic CRTs in hemodialysis. Methods: Interviews were conducted in-person or over the telephone and were audio-recorded with consent. Recorded interviews were transcribed verbatim prior to analysis. Transcripts and field notes were analyzed using a thematic analysis approach. Results: Sixteen interviews were conducted with 19 individuals. Interviewees were largely drawn from North America (84%) and were predominantly clinical investigators (42%). Six themes were identified in which pragmatic CRTs in hemodialysis raise ethical issues: (1) patients treated with hemodialysis as a vulnerable population, (2) appropriate approaches to informed consent, (3) research burdens, (4) roles and responsibilities of gatekeepers, (5) inequities in access to research, and (6) advocacy for patient-centered research and outcomes. Limitations: Participants were largely from North America and did not include research staff, who may have differing perspectives. Conclusions: The six themes reflect concerns relating to individual rights, but also the need to consider population-level issues. To date, concerns regarding inequity of access to research and the need for patient-centered research have received less coverage than other, well-known, issues such as consent. Pragmatic CRTs offer a potential approach to address equity concerns and we suggest future ethical analyses and guidance for pragmatic CRTs in hemodialysis embed equity considerations within them. We further note the potential for the co-creation of health data infrastructure with patients which would aid care but also facilitate patient-centered research. These present results will inform planned future guidance in relation to the ethical design and conduct of pragmatic CRTs in hemodialysis. Trial Registration: Registration is not applicable as this is a qualitative study.

Implementing Serious Illness Communication Processes in Primary Care: A Qualitative Study

2020 ◽  
pp. 104990912095109
Author(s):  
Joanna Paladino ◽  
Elise Brannen ◽  
Emily Benotti ◽  
Natalie Henrich ◽  
Christine Ritchie ◽  
...  
Keyword(s):  
Primary Care ◽  
Qualitative Study ◽  
Program Implementation ◽  
Primary Care Physicians ◽  
Care Program ◽  
Routine Care ◽  
Structured Interviews ◽  
Patient Centered ◽  
Serious Illness ◽  
Primary Care Clinicians

Purpose: Primary care clinicians face barriers to engaging patients in conversations about prognosis, values, and goals (“serious illness conversations”). We introduced a structured, multi-component intervention, the Serious Illness Care Program (SICP), to facilitate conversations in the primary care setting. We present findings of a qualitative study to explore practical aspects of program implementation. Methods: We conducted semi-structured interviews of participating primary care physicians, nurse care coordinators, and social workers and coded transcripts to assess the activities used to integrate SICP into the workflow. Results: We conducted interviews with 14 of 46 clinicians from 6 primary care clinics, stopping with thematic saturation. Qualitative analysis revealed major themes around activities in the timing of the conversation (before, during, and after) and overarching insights about the program. Clinicians used a variety of strategies to adapt program components while preserving key program goals, including processes to generate accountability to ensure that conversations happen in busy clinical workflows. The interviews revealed changes to clinicians’ mindset and norms, such as the recognition of the need to start conversations earlier in the illness course and the use of more expansive models of prognostic communication that address function and quality of life. Data also revealed indicators of sustainable behavior change and the spread of communication practices to patients outside the intended program scope. Conclusion: SICP served as a framework for primary care clinicians to integrate serious illness communication into routine care. The shifts in processes employed by inter-professional clinicians revealed comprehensive models for prognostic communication and creative workflows to ensure that patients with complex illnesses had proactive, longitudinal, and patient-centered serious illness conversations and care planning.

Topik-Topik Komunikasi Dakwah Dalam Mesej Akidah Kepada Masyarakat Orang Asli di Selangor

Sains Insani ◽  
2018 ◽  
Vol 3 (2) ◽  
pp. 15-21
Author(s):  
Zulkefli Aini ◽  
Abdul Ghafar Don ◽  
Ahmad Irdha Mokhtar ◽  
Nur Uswah Ahmad Fauzi
Keyword(s):  
Qualitative Study ◽  
Study Design ◽  
Verbal Feedback ◽  
Structured Interviews ◽  
Orang Asli ◽  
Case Study Design ◽  
Beliefs And Practice ◽  
Islamic Faith ◽  
Selection Of

One of the factors that can affect a person's behavior is a communication message. In the context of the da`wah, preachers who involved actively in da`wah communication with the Orang Asli should be able to ensure that the message conveyed can be understood by the target group. In addition, the selection of the correct messages of da`wah based on the foremost priority simplify the process of sharing information between the preachers and the Orang Asli. Accordingly, this article aims to identify specific topics of Islamic faith (akidah) submitted by the Orang Asli in the process of da`wah communication and to identify verbal feedback given by the preachers to the Orang Asli of the topics. This qualitative study using case study design and data was collected through semi-structured interviews. Interviews involving nine preachers were active in da`wah activity to the Orang Asli community in Selangor. Data were analyzed thematically according to the specified objectives. The study found that the topics frequently raised by the Orang Asli is concerned about belief in Allah, belief in Malaikat, and belief in Qada' and Qadar. The topics may be found within the framework of worldview in their beliefs and practice of ancient traditions. Therefore, the preachers gave verbal feedback on these topics is based on a clear and precise sample corresponding to the level of their thinking. The emphasis on these topics is very important to strengthen and purify the faith of the community.Keywords: Communication; Message; Preacher; Indigenous community Abstrak: Elemen mesej dalam komunikasi merupakan salah satu faktor yang dapat memberi kesan terhadap perubahan tingkah laku seseorang. Dalam konteks dakwah, pendakwah yang terlibat dalam proses komunikasi dakwah dengan Orang Asli seharusnya berkebolehan memastikan kandungan mesej yang disampaikan boleh difahami oleh sasaran dakwahnya. Di samping itu, pemilihan mesej dakwah yang betul mengikut keutamaan memudahkan proses perkongsian maklumat antara pendakwah dengan Orang Asli. Sehubungan dengan itu, artikel ini bertujuan untuk mengenalpasti topik-topik tertentu dalam mesej akidah yang dikemukakan oleh masyarakat Orang Asli kepada pendakwah dan mengenalpasti maklum balas lisan yang diberikan oleh pendakwah kepada Orang Asli terhadap topik tersebut. Kajian kualitatif ini menggunakan reka bentuk kajian kes dengan pengumpulan data melalui temu bual separa struktur. Temu bual melibatkan sembilan orang pendakwah yang aktif dalam aktiviti dakwah masyarakat Orang Asli di Selangor. Data kajian dianalisis secara tematik mengikut objektif yang ditentukan. Kajian ini mendapati bahawa topik-topik yang sering dikemukan oleh Orang Asli kepada pendakwah dalam penyampaian mesej akidah ialah berkenaan tentang keimanan kepada Allah SWT, keimanan kepada malaikat, dan keimanan kepada qada’ dan qadar. Topik-topik berkenaan didapati berada dalam kerangka worldview kepercayaan dan amalan tradisi mereka. Sehubungan dengan itu, pendakwah memberikan maklum balas lisan terhadap topik-topik tersebut adalah berdasarkan keterangan yang jelas dan contoh yang tepat bersesuaian dengan tahap pemikiran mereka. Penekanan terhadap topik-topik tersebut merupakan perkara yang penting dalam rangka mengukuhkan dan memurnikan akidah masyarakat Orang Asli.Kata kunci: Komunikasi; Mesej; Pendakwah; Komuniti Orang Asli

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