scholarly journals Exploring the Experiences of Adults With Microtia: A Qualitative Study

2020 ◽  
Vol 57 (10) ◽  
pp. 1230-1237
Author(s):  
Claire Hamlet ◽  
Diana Harcourt
Keyword(s):  
Decision Making ◽  
Negative Impact ◽  
Treatment Decision ◽  
Improve Patient Care ◽  
Psychosocial Interventions ◽  
Romantic Partners ◽  
Future Research ◽  
Ear Reconstruction ◽  
Structured Interviews ◽  
Treatment Decision Making

Objective: Microtia is a medically complex condition, with the option of surgery to address hearing and reconstruct the ear. The current study explored adults’ experiences of microtia, with a particular focus on the psychosocial impact and experiences of ear reconstruction. The ultimate aim was to identify areas for support and future research that could improve patient care. Design: Fifteen adults (12 females) aged between 20 and 62 years took part in semi-structured interviews. Interviews were audio-recorded, transcribed verbatim, and analyzed using inductive thematic analysis. Results: Three main themes were identified in the data: microtia as an invisible difference, surgery as a welcome opportunity, and living well with microtia. Participants had incorporated microtia into their self-concept and did not report a lasting negative impact on their lives. However, some psychosocial challenges were reported, including anxiety about showing their ears (even after reconstruction), disclosing their diagnosis to romantic partners, surgical decision-making, and feeling unsupported in the work environment. Conclusion: Individuals with microtia may benefit from psychosocial interventions to increase confidence, access to support for treatment decision-making, and guidance around disclosing microtia to employers.

Information behaviour and decision-making in patients during their cancer journey

2017 ◽  
Vol 35 (3) ◽  
pp. 494-506 ◽  
Author(s):  
Shih-Chuan Chen
Keyword(s):  
Decision Making ◽  
Cancer Patients ◽  
Information Source ◽  
Alternative Therapy ◽  
Treatment Decision ◽  
Treatment Method ◽  
Structured Interviews ◽  
Content Type ◽  
Information Behaviour ◽  
Treatment Decision Making

Purpose This paper aims to investigate the effect of cancer patients’ information behaviour on their decision-making at the diagnosis and treatment stages of their cancer journey. Patients’ information sources and their decision-making approaches were analyzed. Design/methodology/approach Semi-structured interviews were conducted with 15 participants. Findings The cancer patients sought information from various sources in choosing a hospital, physician, treatment method, diet and alternative therapy. Physicians were the primary information source. The patients’ approaches to treatment decision-making were diverse. An informed approach was adopted by nine patients, a paternalistic approach by four and a shared decision-making approach by only two. Practical implications In practice, the findings may assist hospitals and medical professionals in fostering pertinent interactions with patients. Originality/value The findings can enhance researcher understanding regarding the effect of cancer patients’ information behaviour on their decision-making.

Treatment Decision Making

2021 ◽  
pp. 573-577
Author(s):  
Allison Marziliano ◽  
Michael A. Diefenbach
Keyword(s):  
Decision Making ◽  
Cultural Differences ◽  
Gold Standard ◽  
Ethnic Disparities ◽  
Treatment Decision ◽  
Optimal Treatment ◽  
Future Research ◽  
Decision Tools ◽  
Treatment Decision Making ◽  
Racial Ethnic

This chapter focuses on the different facets of treatment decision making that have been empirically derived and are part of the peer-reviewed literature. These facets are approaches of treatment decision making (i.e. exploration and uptake of shared decision making, the current gold standard of treatment decision making); optimal treatment decision making (i.e. barriers and facilitators to engaging in optimal treatment decision making); support for treatment decision making (i.e. decision tools, nomograms, and seeking guidance on the Internet); the psychosocial state of patients following treatment decisions; and considerations related to studying treatment decision making (i.e. racial/ethnic disparities, cultural differences in decision making). Areas in which research is lacking or nonexistent (i.e. ensuring the patient understands the goals of treatment before making a treatment decision) are also highlighted as directions for future research.

scholarly journals The cultural and structural influences that ‘hide’ information from women diagnosed with breast cancer in Ghana: an ethnography

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Linda Serwaa Agyemang ◽  
Claire Foster ◽  
Chris McLean ◽  
Deborah Fenlon ◽  
Richard Wagland
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Cultural Influences ◽  
Language Barriers ◽  
Treatment Decision ◽  
Cultural Factors ◽  
Structured Interviews ◽  
Financial Barriers ◽  
Essential Information ◽  
Treatment Decision Making

Abstract Background Socio-cultural factors may influence the uptake of breast cancer treatments. This study aimed to explore these socio-cultural influences on treatment decision-making for women in Ghana. Method An ethnographic approach was adopted. Observation was conducted of women newly diagnosed with breast cancer, nominated relatives, nurses and doctors at a breast clinic in Ghana. Semi-structured interviews followed participant observation. Thematic analysis was employed. Findings Over 16 weeks (July 2017–November 2017), 31 participants were observed and 29 took part in semi-structured interviews. Three overarching themes were identified: (1) unequal power relationships; (2) Language barriers and (3) structural constraints. Following a breast cancer diagnosis, essential information necessary for treatment decision making is ‘hidden’ from women due to an unequal patient-provider relationship. Patients acknowledged cultural behaviours of deference to experts. Doctors deliberately misrepresented treatment information to women to encourage them to undergo surgical treatment. Structural issues such as the lack of privacy during consultations hindered quality patient engagement with decision-making. High treatment costs and the lack of resources to assist women with fertility after treatment impeded open discussions around these issues. Language barriers included a lack of terms in the local Twi language to explain cancer and its treatment. There was also an absence of appropriate information materials. Conclusion Findings highlight the need for health professionals to be aware of the socio-cultural factors that limit access to quality information which is needed for informed treatment decision making. Policies that aim to provide adequate logistics; increase staffing levels; improve staff cultural awareness training and remove financial barriers are recommended.

scholarly journals Self-referral of Chinese patients with advanced chronic kidney disease and treatment decision-making: A qualitative study

2020 ◽  
Author(s):  
Yajing Gao ◽  
Yan Shan ◽  
Tingting Jiang ◽  
Xue Li ◽  
Xinxin Jiang ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Decision Making ◽  
Kidney Disease ◽  
Negative Emotion ◽  
Treatment Decision ◽  
Chinese Patients ◽  
Structured Interviews ◽  
Advanced Chronic Kidney Disease ◽  
Treatment Decision Making ◽  
Referral Decision

Abstract: Rationale, aims, and objectives: Chinese patients with advanced chronic kidney disease (CKD), especially rural patients possibly occur self-referral behavior and then treatment decisions followed. It is unclear the relationship between self-referral and treatment decision-making. Thus, the aim of this study was to explore the perceptions and views of self-referral and treatment decision making among patients with advanced chronic kidney disease. Methods: We conducted semi-structured interviews with 26 patients with advanced kidney disease and 12 nephrologists. Interviews were conducted and analyzed thematically until reaching thematic saturation. Results: We identified three themes reflected: 1) self-referral decision making (self-referral motive, barrier to self-referral, seeking for self-referral information); 2) the views and experience of self-referral care (facilitating shared decision making, imposing psychological pressure, feeling about self-referral communication, challenge to staff-patient relationship); 3) treatment decision making (decisional awareness and roles, cost-benefit trade-off and redicision). Conclusions: Our study identified that organizational and demographic factors, self-referral motives worked together at the self-referral decision-making and treatment decision-making when advanced CKD patients facing with healthcare facilities and treatment options. Those findings suggest stakeholders should accelerate the popularization of peritoneal dialysis technology and establish the CKD screening and management systems. For self-referral patients with advanced CKD, our results suggest specialized dialysis transition care to improve quality of communication and soothe patients’ negative emotion.

Desire for Information and Involvement in Treatment Decisions: Elderly Cancer Patients' Preferences and Their Physicians' Perceptions

2007 ◽  
Vol 25 (33) ◽  
pp. 5275-5280 ◽  
Author(s):  
Elena B. Elkin ◽  
Susie H.M. Kim ◽  
Ephraim S. Casper ◽  
David W. Kissane ◽  
Deborah Schrag
Keyword(s):  
Decision Making ◽  
Patient Preferences ◽  
Treatment Decision ◽  
Active Role ◽  
Treatment Decisions ◽  
Structured Interviews ◽  
Prognostic Information ◽  
Treatment Decision Making ◽  
Oncology Practice ◽  
Contemporary Medicine

Purpose Shared decision making is a tenet of contemporary medicine and oncology practice. How involved elderly patients want to be in making treatment decisions and how physicians perceive patient preferences for such involvement are uncertain. Patients and Methods In structured interviews about multiple facets of chemotherapy treatment decision making, we asked patients age 70 years and older with a recent diagnosis of metastatic colorectal cancer (CRC) about their preferences for prognostic information and for involvement in treatment decision making. We also asked treating oncologists (n = 19) to describe their perceptions of patient preferences. Information and decision-making preferences were evaluated in relation to sociodemographic and clinical characteristics. Results Seventy-three patients age 70 to 89 years completed the study interview within 16 weeks of metastatic CRC diagnosis. Most patients (n = 70; 96%) had decided to receive chemotherapy and 61 had initiated treatment. Relatively few (n = 32; 44%) wanted information about expected survival when they made a treatment decision. Preference for prognostic information was more common among men than women (56% v 29%; P < .05). About half of the patients (n = 38; 52%) preferred a passive role in the treatment decision-making process. Physician perceptions were concordant with patient preferences for information in 44% of patient-physician pairs and for decision control in 41% of patient-physician pairs. Conclusion For older patients with advanced CRC, preferences for prognostic information and for an active role in treatment decision making are not easily predictable. Physicians' perceptions are often inconsistent with patients' stated preferences. Explicit discussion of preferred decision-making styles may improve patient-physician encounters.

scholarly journals Patients' priorities for treatment decision making during periods of incapacity: quantitative survey

2014 ◽  
Vol 13 (5) ◽  
pp. 1165-1183 ◽  
Author(s):  
Annette Rid ◽  
Robert Wesley ◽  
Mark Pavlick ◽  
Sharon Maynard ◽  
Katalin Roth ◽  
...  
Keyword(s):  
Decision Making ◽  
Clinical Practice ◽  
Financial Burden ◽  
Care Center ◽  
Tertiary Care ◽  
Treatment Decision ◽  
Treatment Decisions ◽  
Future Research ◽  
Quantitative Survey ◽  
Treatment Decision Making

AbstractObjective:Clinical practice aims to respect patient autonomy by basing treatment decisions for incapacitated patients on their own preferences. Yet many patients do not complete an advance directive, and those who do frequently just designate a family member to make decisions for them. This finding raises the concern that clinical practice may be based on a mistaken understanding of patient priorities. The present study aimed to collect systematic data on how patients prioritize the goals of treatment decision making.Method:We employed a self-administered, quantitative survey of patients in a tertiary care center.Results:Some 80% or more of the 1169 respondents (response rate = 59.8%) ranked six of eight listed goals for treatment decision making as important. When asked which goal was most important, 38.8% identified obtaining desired or avoiding unwanted treatments, 20.0% identified minimizing stress or financial burden on their family, and 14.6% identified having their family help to make treatment decisions. No single goal was designated as most important by 25.0% of participants.Significance of Results:Patients endorsed three primary goals with respect to decision making during periods of incapacity: being treated consistent with their own preferences; minimizing the burden on their family; and involving their family in the decision-making process. However, no single goal was prioritized by a clear majority of patients. These findings suggest that advance care planning should not be limited to documenting patients' treatment preferences. Clinicians should also discuss and document patients' priorities for how decisions are to be made. Moreover, future research should evaluate ways to modify current practice to promote all three of patients primary goals for treatment decision making.

A comparison of patient and physician attributes that promote patient involvement in treatment decision making in the oncology consultation

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 6098-6098
Author(s):  
P. M. Ellis ◽  
S. J. Dimitry ◽  
M. A. O’Brien ◽  
C. A. Charles ◽  
T. J. Whelan
Keyword(s):  
Decision Making ◽  
Information Seeking ◽  
Patient Involvement ◽  
Treatment Options ◽  
Treatment Decision ◽  
Skills Training ◽  
Structured Interviews ◽  
Treatment Decision Making ◽  
High Level ◽  
Level Of Agreement

6098 Background: Cancer patients have indicted a desire to be more involved in treatment decision making (TDM). However, little is known about the attributes of patients, physicians and their interaction that promotes patient involvement in TDM in the oncology consultation. This study compared attributes generated by patients and physicians that make it easier for patients to be involved in TDM. Methods: Semi-structured interviews were undertaken with 19 patients with cancer (lung, breast, prostate, GI) and 21 medical and radiation oncologists at a regional cancer centre. Participants were asked to identify attributes of physicians, patients and their interaction that promotes patient involvement in TDM. Interview transcripts were independently coded by 2 analysts using decision rules to identify specific attributes. Attributes identified by each analyst were compared and a high level of agreement was found. The analysts then independently compared the physician and patient generated lists and identified common vs unique items. There was a high level of agreement on which attributes were common to both lists versus unique. Results: Oncologists identified 173 physician, 59 patient and 9 interaction items. Patients identified 50 physician, 42 patient and 11 interaction items. Patients and physicians identified 17 common physician items, 29 common patients items and 1 common interaction item. Physicians identified 138 more attributes than patients, most of which were physician related. Common patient attributes centred on information seeking (eg prepare for the consultation by reading, be aware of all treatment options and question the options). Common physician attributes focused on specific communication behaviors (eg, make eye contact, tailor information to patient needs, be direct with patients, ensure patient understands information). The common interaction item was to keep the discussion informal. Conclusions: Patients and physicians appear to have different ideas about what is important to promote patient involvement in TDM. Many of the attributes identified can be easily incorporated into current practice. There is a need to develop and evaluate communication skills training to promote patient involvement in TDM. No significant financial relationships to disclose.

scholarly journals The consent process: Enabling or disabling patients’ active participation?

2016 ◽  
Vol 21 (2) ◽  
pp. 205-222 ◽  
Author(s):  
Carole Doherty ◽  
Charitini Stavropoulou ◽  
Mark NK Saunders ◽  
Tracey Brown
Keyword(s):  
Decision Making ◽  
Treatment Decision ◽  
Active Participation ◽  
Consent Form ◽  
Consent Process ◽  
Medical Decision ◽  
Structured Interviews ◽  
Treatment Decision Making ◽  
Consent To Treatment ◽  
Regulatory Bodies

Standards expected by doctors’ regulatory bodies in respect of the process of consent to treatment have arguably sought to restructure the nature of the doctor–patient relationship from one of the paternalism to that of shared decision-making. Yet, few studies have explored empirically, from patients’ perspectives, the extent to which the process of consent to treatment enables or disables patients’ participation in medical decision-making. Our article examines patients’ attitudes towards the consent process, exploring how and why these attitudes influence patients’ active participation in decision-making and considering possible consequent medico-legal issues. Data were collected longitudinally using semi-structured interviews and field observations involving 35 patients and 19 of their caregivers, in an English hospital between February and November 2014. These indicate that generally patients defer to the doctor in respect of treatment decision-making. Although most patients and their caregivers wanted detailed information and discussion, they did not necessarily expect that this would be provided. Furthermore, patients perceived that signing the consent form was an obligatory routine principally to protect doctors from legal action should something go wrong. Our study suggests that patients’ predominantly paternalistic perceptions of the consent process can not only undermine attempts by doctors to involve them in decision-making but, as patients are now considered in law as informed actors, their perceptions of the consent form as not being in their interests could be a self-fulfilling prophecy if signing is undertaken without due consideration to the content.

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