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1.
Article in English | MEDLINE | ID: mdl-39350675

ABSTRACT

This commentary reflects on the recent study by Villena et al., which addresses the need for enhanced shared decision-making (SDM) for individuals with anxiety disorders. As a psychiatrist with expertise in anxiety management, I commend the study's emphasis on patient involvement and its alignment with real-world clinical challenges. The findings, particularly regarding patients' preferences for psychological interventions and the current trend towards pharmacological treatments, highlight the need to better align treatment approaches with evidence-based guidelines. Additionally, the study underscores the importance of psychoeducation and active coping strategies like exposure techniques. These insights offer valuable contributions towards improving patient-centred care and SDM in anxiety disorder treatment.

2.
Rinsho Ketsueki ; 65(9): 1025-1032, 2024.
Article in Japanese | MEDLINE | ID: mdl-39358257

ABSTRACT

The prognosis of hematopoietic diseases has been improving over the past several decades, and measures to fulfill patients' wishes to have children are needed to improve survivors' quality of life. In Japan, the Japan Society for Fertility Preservation has taken the lead in developing guidelines, a national registry, and a nationwide uniform subsidy system. When considering fertility preservation in patients with hematopoietic diseases, interdisciplinary collaboration between oncology and onco-fertility is necessary to solve problems specific to hematopoietic diseases, such as the short time window between the onset of disease and the start of treatment, complications associated with fertility preservation treatment such as bleeding or ovarian hyperstimulation syndrome, and contamination of collected tissue with hematopoietic tumor cells. This article outlines the basic concept of fertility preservation in patients with hematopoietic diseases and recently established strategies for women with chronic myelogenous leukemia. It will also share some treatment innovations that can be considered in cases when fertility preservation treatment may be challenging.


Subject(s)
Fertility Preservation , Humans , Fertility Preservation/methods , Hematologic Diseases/therapy , Female , Quality of Life
3.
Rinsho Ketsueki ; 65(9): 1234-1238, 2024.
Article in Japanese | MEDLINE | ID: mdl-39358282

ABSTRACT

Evidence-based medicine (EBM) is "decision-making for better patient care that integrates current evidence, and clinical expertise with patients' preferences, values and circumstances." It is important to distinguish research evidence from EBM, which is comprehensive decision-making that takes into account the diversity and individuality of clinical situations while respecting evidence as a general theory. Clinical practice guidelines are "a document that evaluates the total body of evidence through systematic review and presents recommendations that are considered optimal, taking into account the balance of benefits and harms, in order to support decision-making on important health-related issues by healthcare users and providers," and is useful in the practice of EBM. Shared decision making (SDM), which has been attracting attention in recent years, is "a process in which the patient and the health care provider, through dialogue, decide on a treatment plan that is acceptable to the patient, based on the patient's own preferences and values, research evidence, and clinical expertise" and must be understood in relation to the above definition of EBM and from the perspective of clinical ethics.


Subject(s)
Evidence-Based Medicine , Humans , Ethics, Clinical , Decision Making, Shared , Decision Making
4.
Article in English | MEDLINE | ID: mdl-39360346

ABSTRACT

OBJECTIVE: To identify barriers and facilitators to implementing shared decision making (SDM) in pediatric otolaryngology. STUDY DESIGN: A qualitative study. SETTING: Semistructured interviews of pediatric otolaryngologists. METHODS: The Theoretical Domains Framework (TDF) was used as a guide for data collection and analysis to consider capability, opportunity, and motivation (COM-B) factors. The focal surgical procedures were tonsillectomy, adenoidectomy, and tympanostomy tube placement. Deductive and inductive coding of interview transcripts according to TDF/COM-B domains were performed by 2 separate reviewers. RESULTS: A total of 11 interviews were conducted to achieve data saturation. The 4 dominant themes were: (1) inconsistent inclusion of SDM elements in practice, (2) social influences from parents, (3) environmental context, and (4) applicability of SDM in otolaryngology. Theme 1 identified that surgeons perceived SDM as a feature of their practice. However, the discussion of parents' values was seen as less explicit and structured interview formats were not commonly employed. Theme 2 demonstrated that surgeons saw parents' preconsult "agenda" as influencing their openness to consider multiple treatment options. Theme 3 pointed to the barriers of short appointment times, challenges in the use of support staff and lack of decision aids. Theme 4 emphasized surgeons' belief in the value of SDM and that parents' involvement in decision making reduced likelihood of decisional regret. CONCLUSION: Pediatric otolaryngologists strongly support the value of SDM during clinical encounters, particularly to allow parent ownership of decisions regarding treatment. The major barriers were lack of clinical translation of SDM knowledge, social influences, and environmental factors.

5.
Article in English | MEDLINE | ID: mdl-39362486

ABSTRACT

Clinical teams are at the heart of healthcare value. Teamwork requires an appreciation of the unique geniuses of each team member as well as an understanding of team dynamics and larger organizational challenges. Effective teams leverage each member's unique talents within a culture of shared humility, service, and dedication. While interpersonal communication is paramount, organizations which promote a culture of psychological safety to allow productive and necessary conflict are most effective at the fostering shared commitment that allows real accountability and result-oriented, responsive systems. Healthy teams can serve to energize clinicians to provide outstanding service and high value care.

6.
BMC Med Inform Decis Mak ; 24(1): 277, 2024 Sep 30.
Article in English | MEDLINE | ID: mdl-39350254

ABSTRACT

BACKGROUND: Fibroids are non-cancerous uterine growths that can cause symptoms impacting quality of life. The breadth of treatment options allows for patient-centered preference. While conversation aids are known to facilitate shared decision making, the implementation of these aids for uterine fibroids treatments is limited. We aimed to develop two end-user-acceptable uterine fibroids conversation aids for an implementation project. Our second aim was to outline the adaptations that were made to the conversation aids as implementation occurred. METHODS: We used a multi-phase user-centered participatory approach to develop a text-based and picture-enhanced conversation aid for uterine fibroids. We conducted a focus group with project stakeholders and user-testing interviews with eligible individuals with symptomatic uterine fibroids. We analyzed the results of the user-testing interviews using Morville's Honeycomb framework. Spanish translations of the conversation aids occurred in parallel with the English iterations. We documented the continuous adaptations of the conversation aids that occurred during the project using an expanded framework for reporting adaptations and modifications to evidence-based interventions (FRAME). RESULTS: The first iteration of the conversation aids was developed in December 2018. Focus group participants (n = 6) appreciated the brevity of the tools and suggested changes to the bar graphs and illustrations used in the picture-enhanced version. User-testing with interview participants (n = 9) found that both conversation aids were satisfactory, with minor changes suggested. However, during implementation, significant changes were suggested by patients, other stakeholders, and participating clinicians when they reviewed the content. The most significant changes required the addition or deletion of information about treatment options as newer research was published or as novel interventions were introduced into clinical practice. CONCLUSIONS: This multi-year project revealed the necessity of continuously adapting the uterine fibroids conversation aids so they remain acceptable in an implementation and sustainability context. Therefore, it is important to seek regular user feedback and plan for the need to undertake updates and revisions to conversation aids if they are going to be acceptable for clinical use.


Subject(s)
Leiomyoma , Humans , Leiomyoma/therapy , Female , Adult , Middle Aged , Focus Groups , Uterine Neoplasms/therapy , Decision Making, Shared
7.
Health Expect ; 27(5): e70041, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39373127

ABSTRACT

AIM: To implement shared decision-making (SDM) through a patient decision aid (PtDA) for the initiation of palliative care (PC) in end-of-life (EOL) cancer patients. METHODOLOGY: A comprehensive Scoping Review was conducted on SDM in PubMed, CINAHL and PsycInfo. An evidence-based implementation of PtDAs was created using the Joanna Briggs Institute framework, which followed rigorous pillars: (1) context, (2) facilitation and (3) evaluation. RESULTS: Fifteen studies were identified and categorised into (1) Implementation characteristics and (2) Strategies for implementing SDM in terminally ill cancer patients. SDM should consider the decision-making location, optimal timing, participants and decision type. Strategies include professional training, PtDAs and implementation programmes. A PtDA implementation protocol in video format for deciding to initiate PC is proposed, following International Patient Decision Aid Standards (IPDAS) and Clinical Practice Guidelines (CPG). CONCLUSIONS: SDM implementation should be guided by evidence-based methodological models justifying and structuring its execution, especially in complex and interdisciplinary contexts. National or international frameworks facilitate the adoption of health innovations, such as PtDAs, benefiting patients and improving their usage. PRACTICE IMPLICATIONS: SDM is not just a concept but an important approach to the Care of cancer patients at EOL, enhancing patient satisfaction and improving care quality. The success and sustainability of SDM hinge on the fundamental aspects of staff training, interdisciplinary collaboration and ongoing evaluation. The lack of specific aid in Spanish underscores the immediate need for local development. Further research is needed in this area, as most reviewed studies did not measure SDM effectiveness in diverse hospital settings. PATIENT OR PUBLIC CONTRIBUTION: This proposal was developed based on the experience and input of the nursing staff from the healthcare service where it is intended to be implemented.


Subject(s)
Decision Making, Shared , Palliative Care , Terminal Care , Humans , Decision Support Techniques , Neoplasms/therapy , Patient Participation/methods
8.
Am J Hosp Palliat Care ; : 10499091241287861, 2024 Oct 09.
Article in English | MEDLINE | ID: mdl-39382903

ABSTRACT

Background: Physician's clinical inputs and informed bystander opinions are essential for successful intensive care unit (ICU) patient outcomes. There is insufficient data regarding the impact of shared decision-making on treatment outcomes and family satisfaction in Indian ICU settings. We aimed to determine the effect of shared decision-making factors on family satisfaction with ICU services. Patients and Methods: Family bystanders of 336 ICU patients with a stay >72 hours were conveniently surveyed across 13 months prospectively using Family Satisfaction in the Intensive Care Unit 24 Revised (FS-ICU 24R) questionnaire. We analyzed the responses to determine shared decision-making factors impacting family satisfaction. Results: Univariate analysis of ten variables of FS-ICU 24R questionnaire decision-making subscale revealed that consistency of information (OR 8.71, P < 0.001), honesty of information (OR 7.04, P < 0.001), and frequency of communication with doctors (OR 6.25, P < 0.001) were associated with highest odds of family involvement and satisfaction. Multivariable logistic regression showed that consistency of information (adjusted OR 3.85, P < 0.001) and frequent doctor communication (adjusted OR 2.22, P = 0.02) were independent predictors associated with family satisfaction. The number of decision-makers (P = 0.463) or family's prior ICU experience (P = 0.430) was not associated with family satisfaction. Conclusion: A consistent and honest effort to cater to the family's information needs and frequent physician-bystander interaction is essential for family's satisfaction with ICU services. This even outweighs other decision-making factors such as number of decision-makers and their prior ICU experience. Incorporating shared decision-making in counseling should be a continuing practice.Trial registry name: Clinical Trials Registry - India.Registration number: CTRI/2022/09/045571.

9.
Health Expect ; 27(5): e70029, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39358983

ABSTRACT

INTRODUCTION: Divided narratives pose long-standing difficulties in physician and patient communication. In decision-making on cancer treatment, divided narratives between physicians and patients hinder mutual understanding and agreement over the illness and its treatment. For effective decision-making on treatments, it is necessary to investigate the similarities and differences in these divided narratives. METHODS: This study adopted a qualitative research design of narrative inquiry to examine the data, which included interviews with 32 cancer patients and 16 paired physicians in two hospitals in China. Data analysis was conducted using grounded theory to generate findings. RESULTS: Both physicians and patients were concerned about goals and obstacles to their decision-making on cancer treatment. Four common aspects of goal setting were identified from the divided narratives: decision pools, treatment goals, identity practice and preferred identity. Four common obstacles were identified: pains and trust, communication gap, financial issues and complex family. However, the meanings attached to these eight aspects differed between physicians and patients. CONCLUSION: Cancer treatment decision-making is an encounter of the scientific world and lifeworld. A divided narrative approach can identify the similarities and differences in the decision-making on cancer treatment between physicians and patients. Physicians generally adopt a rational decision-making approach, whereas patients generally adopt a relational decision-making approach. Despite the common concerns in their goals and obstacles, physicians and patients differed in their contextualized interpretations, which demonstrates the physicians' and the patients' pursuit of preferred identities in decision-making. The results of this study provide a new perspective to treatment decision-making, emphasizing the importance of narrative integration in reaching mutual agreement. PATIENT AND PUBLIC CONTRIBUTION: The findings were shared with 15 cancer patients and caregivers for feedback and advice in June 2024. This study was also presented at the international conferences of COMET (International and Interdisciplinary Conference on Communication, Medicine, and Ethics) and ICCH (International Conference on Communication in Healthcare) 2023 for continuous feedback and comments.


Subject(s)
Communication , Decision Making , Neoplasms , Physician-Patient Relations , Physicians , Qualitative Research , Humans , Neoplasms/therapy , Neoplasms/psychology , Female , Male , Middle Aged , China , Adult , Physicians/psychology , Narration , Interviews as Topic , Grounded Theory , Aged
10.
Front Rehabil Sci ; 5: 1414878, 2024.
Article in English | MEDLINE | ID: mdl-39363988

ABSTRACT

Purpose: To explore the attitudes and experiences of clinicians and individuals with chronic stroke on the use of shared decision-making (SDM) during upper extremity rehabilitation to improve daily arm use in the home environment. Specifically, we aimed to describe clinician and client perspectives regarding the facilitators and barriers to using SDM within the context of a self-directed upper extremity intervention for individuals living in the community with chronic stroke. Methods: Data were collected within the context of an interventional study examining the feasibility of the Use My Arm-Remote intervention. Focus group interviews were conducted with the clinicians (n = 3) providing the intervention and individual semi-structured interviews with the participants (n = 15) of the study. All interview data were collected after the end of the intervention period. Data were analyzed using thematic analysis. Results: The following themes were identified: (1) Equal partnership; (2) Enhancing clinician confidence; and (3) This is different. Facilitators and barriers were identified within each theme. Key facilitators for clinicians were competence with SDM and patient characteristics; while facilitators for patients were open and trusting relationships with clinicians and personalized experience. Key barriers to SDM for clinicians were lack of expertise in SDM and participant buy in; while patients identified a lack of foundational knowledge of stroke rehabilitation as a potential barrier. Conclusions: Key barriers were analyzed using the consolidated framework for advancing implementation science to interpret results and identify strategies for enhancing the implementation of SDM in a virtual setting. The CFIR-ERIC tool highlighted the need for targeted educational meetings and materials to address the training and educational needs of both clinicians and patients for future iterations of this intervention.

11.
Pediatr Blood Cancer ; : e31354, 2024 Oct 04.
Article in English | MEDLINE | ID: mdl-39367580

ABSTRACT

Pediatric surgeons engaged in oncology will inevitably treat patients receiving palliative care, but their role in this context is poorly described. This article identifies some of the challenges and opportunities of surgical involvement in pediatric oncology palliative care, underscoring how the surgeon's expertise can be exploited to significantly benefit children with cancer. Specific examples of skills (procedural, communication, and coordination) that surgeons can provide to the multidisciplinary palliative care teams are described and the importance of collaboration is highlighted.

12.
Haemophilia ; 2024 Oct 05.
Article in English | MEDLINE | ID: mdl-39368065

ABSTRACT

INTRODUCTION: The use of shared decision-making (SDM) in clinical settings is becoming more prevalent. The evolving and increasingly complex treatment landscape of haemophilia management has augmented the need and desire for SDM between patients and their healthcare team. SDM tools have been used in other chronic conditions and can be an effective form of education for patients and clinicians. AIM: The World Federation of Hemophilia (WFH) partnered with people with haemophilia (PWH), patient advocacy groups, and healthcare practitioners to form an expert working group to develop an educational tool for PWH and their caregivers. The primary objectives included educating PWH on the available prophylactic treatments and facilitating discussion between PWH and their healthcare team. METHODS: The tool was proposed and developed by the expert working group, workshopped at conference round tables, and evaluated in two focus groups. RESULTS: The interactive WFH SDM Tool guides users through the SDM treatment journey and provides an opportunity for reflection on current disease impact and treatment preferences, educational fact sheets and videos, and a comparison between treatment classes. Two forms of the SDM Tool are available: an online platform with a summary page that may be printed and shared and a printable workbook. All evidence in the tool is based on the prescribing information or phase III clinical trial publications. The Tool will be updated twice each year. CONCLUSION: The WFH SDM Tool is the first available resource that translates published guidance on SDM in haemophilia into a practical, user-friendly tool aimed at facilitating patient-centred treatment decisions.

13.
BMC Palliat Care ; 23(1): 236, 2024 Oct 04.
Article in English | MEDLINE | ID: mdl-39367385

ABSTRACT

BACKGROUND: To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual Care Plan (ICP) for PPC was developed. However, in practice, the ICP for PPC is not used for all children in need of PPC. Insight into why, for which problem and for which children HCPs wish to use an ICP in PPC is therefore necessary to assure that the ICP can be fully implemented in practice. METHODS: Two semi-structured focus group interviews were held with 15 experienced healthcare professionals in PPC. Data were thematically analyzed. RESULTS: Participants wish to use an ICP to collaboratively establish a plan with parents for the current and future care and treatment of the child. By doing so, they hope to achieve coordination and continuity of care, to achieve shared decision-making, and to support parents and other healthcare professionals in the care of the child. Participants think the ICP could also be used in the care for children with complex chronic conditions. CONCLUSION: The purposes for which healthcare professionals wish to use an ICP in PPC are broader than the purpose for which the ICP for PPC was developed. Future research should focus on whether the use of an ICP in PPC practice can achieve these purposes.


Subject(s)
Focus Groups , Health Personnel , Palliative Care , Pediatrics , Qualitative Research , Humans , Palliative Care/methods , Palliative Care/standards , Focus Groups/methods , Health Personnel/psychology , Pediatrics/methods , Pediatrics/standards , Female , Male , Patient Care Planning , Adult , Child , Middle Aged
15.
Front Psychiatry ; 15: 1446619, 2024.
Article in English | MEDLINE | ID: mdl-39398960

ABSTRACT

Introduction: Debriefing is recommended after any coercive measure in psychiatry, but there are no wellestablished standards, and ist effectiveness remains unclear. Incorporating shared decision-making (SDM) into post-coercion debriefing interventions has potentially beneficial effects. Methods: This scoping review provides an overview of the general characteristics of such interventions and the extent to which SDM elements are already used in such interventions. Results: A total of 2562 references were identified in the scholarly databases Embase, PubMed, Web of Science, and PsycINFO. In addition, 14 articles were identified through manual searches of reference lists. 42 full-text articles were screened for eligibility, 13 articles met the eligibility criteria and were further analyzed. Discussion: No intervention tool was found that clearly included all SDM elements. However, three elements of SDM were present at least partially in all interventions: definition and explanation of the health care problem, the clarification of the patient's values and preferences, and a decision or explicit deferral of the decision. Further research is needed to systematically examine the implementation and clinical effectiveness of post-coercion debriefing interventions, particularly regarding the inclusion of shared decision-making elements.

16.
Br J Anaesth ; 133(5): 934-939, 2024 Nov.
Article in English | MEDLINE | ID: mdl-39401865

ABSTRACT

Patient-physician communication is an integral part of daily anaesthetic practice. Although it is an undeniably powerful means of building a solid therapeutic alliance, several of its fundamental aspects are often overlooked, which can hinder successful communication in the preoperative period. We outline these underexploited elements by analysing the various phases of preoperative patient-physician interactions to provide the practising anaesthesiologist with a useful framework for achieving thoughtful and patient-centred communication.


Subject(s)
Anesthesiology , Communication , Patient-Centered Care , Physician-Patient Relations , Humans , Anesthesiology/methods , Preoperative Care/methods
17.
Cancer Med ; 13(19): e70218, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39400466

ABSTRACT

PURPOSE: Shared decision-making (SDM) is crucial in pancreatic cancer treatment due to its choice-sensitive nature and limited prognosis. Treatment of pancreatic cancer is organized in a network approach. Several obstacles exist on different levels-patient, healthcare professional, organizational, societal-that impede integration of SDM. This study aims to identify barriers and facilitators to SDM implementation within a comprehensive cancer network. METHODS: A qualitative research design was applied, involving interviews and focus groups on barriers and facilitators with healthcare professionals involved in the implementation of SDM. In one comprehensive cancer network in the Netherlands, including seven hospitals, a project was initiated with the goal of empowering patients and healthcare professionals in SDM throughout primary, secondary and tertiary healthcare settings. A total of 17 participants were assessed. Directed qualitative content analysis was performed by two researchers. RESULTS: Main findings revealed barriers such as time constraints, lack of priority of physicians, little involvement of general practitioners, and insufficient social context of patients in referrals, alongside facilitators including learning communities with practical SDM examples, metro mapping, involvement of case manager in implementation and patient empowerment strategies. CONCLUSION: Addressing cultural, systemic barriers and developing innovative strategies are of importance to enhance SDM in pancreatic cancer treatment in a network approach. This study provides understanding of SDM implementation in complex healthcare settings and offers valuable guidance for future interventions seeking to improve decision-making processes in pancreatic cancer treatment and beyond.


Subject(s)
Decision Making, Shared , Health Personnel , Pancreatic Neoplasms , Patient Participation , Qualitative Research , Humans , Pancreatic Neoplasms/therapy , Pancreatic Neoplasms/psychology , Female , Male , Health Personnel/psychology , Netherlands , Focus Groups , Middle Aged , Physician-Patient Relations , Attitude of Health Personnel , Adult
18.
MDM Policy Pract ; 9(2): 23814683241282413, 2024.
Article in English | MEDLINE | ID: mdl-39380983

ABSTRACT

Introduction. Financial hardship is prevalent among Black prostate cancer survivors and exacerbates health disparities. Characterizing and sharing cost information with patients can facilitate well-informed treatment decision making. Our research explored the direct and indirect costs associated with prostate cancer treatment among Black men and their caregivers. Direct costs included out-of-pocket and insurance-related fees, and indirect costs included the unforeseen costs of care, including patient time, caregiver time, lost wages, and transportation. Methods. We conducted semi-structured interviews with Black prostate cancer survivors and their caregivers to learn about the experience of direct and indirect costs. The interview guide and data analysis were informed by the Measures of Financial Wellbeing framework to gain a better understanding of the material, behavioral, and psychosocial aspects of care-related costs. Guided by a qualitative descriptive approach, we used inductive and deductive coding for our thematic analysis. Results. Eleven prostate cancer survivors with a median age of 68 y (interquartile range [IQR] 62.0-71.5 y) and 11 caregivers with a median age of 64 y (IQR 58.5-70.5 y) participated. We grouped themes into 3 domains and their intersections (i.e., material, behavioral, psychosocial). Participants reported their work and insurance had a significant influence on their finances, treatment costs required rearranging of household budgets, and the weight of indirect costs varied. Ultimately, participants emphasized the significant impact of care costs and the adjustments needed to adapt to them. Discussion. The complexities of material, behavioral, and psychosocial domains of direct and indirect costs of prostate cancer are critical to address when supporting those diagnosed with prostate cancer when making preference-sensitive treatment decisions. The interconnectedness between indirect costs highlights the wide-ranging impact financial well-being has on prostate cancer survivors and caregivers. Highlights: Direct and indirect costs have a wide-ranging impact on the material, behavioral, and psychosocial aspects of financial well-being of Black prostate cancer survivors and their caregivers.These results emphasize the need for sharing cost information to support medical decision making.Future research should focus on the design of cost-sharing interventions that target the complexities of direct and indirect costs collectively, rather than separately.

19.
Res Sq ; 2024 Sep 16.
Article in English | MEDLINE | ID: mdl-39372925

ABSTRACT

Background: Shared decision-making in healthcare is a collaborative process where patients are supported to make informed decisions according to their preferences. Healthcare decisions affect patients' lives which necessitates patients to participate in decisions concerning their health. This study explored experiences and ethical issues related to shared decision-making in a rural healthcare setting. Methods: An exploratory qualitative study was conducted at Budumba Health Centre III and Butaleja Health Centre III in rural Eastern Uganda. In this study, 23 in-depth interviews were conducted among 12 healthcare providers and 11 patients. Data was analyzed thematically using NVivo-12 plus software. Results: Four themes emerged which included: experiences, challenges, strategies for improvement, and ethical issues. Patients at both facilities expressed the need to be involved in decision-making processes. However, many stressed that they are not engaged in decision-making about their health. Many healthcare providers noted that shared decision-m aking could improve patient prognosis but are faced with challenges related to low male involvement and the influence of cultural and religious practices, including myths and patriarchal attitudes which impact effective patient engagement.Ethical issues included concerns about informed consent, privacy and confidentiality, deception, and harm. This study highlighted the need for better sensitization of patients and comprehensive training for HCPs to minimize and resolve ethical issues that emerge during shared decision-making processes. Conclusions: There is a need for targeted interventions to enhance decision-making processes in rural healthcare including but not limited to developing shared decision-making manual and continuous training of healthcare providers to ethically engage patients. Further research is needed to explore larger facilities with a bigger scope including patients under 18 years of age and and their surrogates.

20.
Sociol Health Illn ; 2024 Oct 10.
Article in English | MEDLINE | ID: mdl-39387343

ABSTRACT

Caring for the extremely premature infant born in the grey zone of viability is the most difficult area of neonatal medicine. Little research has been done on antenatal communication between neonatologists and parents anticipating the birth of a periviable infant. This article analyses 25 antenatal consultations between neonatologists and parents in one Midwestern hospital in the United States of America. It explores how neonatologists position comfort care as one of two predominant care trajectories for extremely premature infants born into the grey zone of viability. We found comfort care featured minimally in and was often marginalised by neonatologists' language. The two dominant discourses contributing to this were acute medicine's life-saving capacity and a limited temporal window marked by gestational age where comfort measures were deemed appropriate. Antenatal consultations framed by shared decision-making could be approached as a form of care characterised by a relational openness and responsiveness to parents' views on care. This asks neonatologists to enter antenatal consultations for periviability without knowing ahead of time which care trajectory will necessarily call one's attention or the particular response one should take, thus highlighting the skills of reflexivity in addition to an attentiveness and openness towards those receiving care.

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