scholarly journals “Do I want to know it all?” A qualitative study of glioma patients’ perspectives on receiving information about their diagnosis and prognosis

2020 ◽  
Author(s):  
Annika Malmström ◽  
Lisa Åkesson ◽  
Peter Milos ◽  
Munila Mudaisi ◽  
Helena Bruhn ◽  
...  
Keyword(s):  
Qualitative Content Analysis ◽  
General Information ◽  
Sensitive Information ◽  
Structured Interviews ◽  
Positive Information ◽  
Related Information ◽  
Diagnosis And Prognosis ◽  
Grade Ii ◽  
To Receive ◽  
Tailored Information

Abstract Purpose Glioma patients have poor prognosis. The amount of detail of disease-related information patients wish to receive is not known. The aim of this study was to explore glioma patients’ experiences and preferences regarding receiving information on diagnosis and prognosis. Methods Semi-structured interviews were performed with patients diagnosed with glioma. The interviews were analysed by qualitative content analysis without predefined categories by two independent coders. Results Ten women and 15 men, with newly diagnosed grade II–IV glioma, age 25–76 years, were interviewed. Participants’ experience on diagnosis communication was either indirect, meaning they found out their diagnosis unintentionally, e.g., from their electronic health record (EHR) instead of from their doctor, this causing anxiety and feelings of abandonment, insufficiently tailored: lacking in many aspects or individualised and compassionate. Participants generally wanted to know “the truth” about diagnosis and prognosis, but what they meant varied; some desired full honest information to allow for autonomous choices, others preferred general information without details, and some wanted no bad news at all, only positive information. Participants disclosed vulnerability after receiving their diagnosis, being cast into the unknown. They expressed a need for better everyday practical information to help create some control. Supportive staff could reduce participants’ distress. Conclusion There is a need to further develop and implement individually tailored information to glioma patients, both in consultations and patient-accessed EHR systems, which should have safe guards for sensitive information. Not all patients want to know it all, one size does not fit all.

scholarly journals Perception of Childbirth Experiences of Japanese Women in Bali, Indonesia: A Qualitative Study

2020 ◽  
Author(s):  
Kazuko Tanaka ◽  
Ni Made Dian Kurniasari ◽  
Desak Nyoman Widyanthini ◽  
Ni Luh Putu Suariyani ◽  
Rina Listyowati ◽  
...  
Keyword(s):  
Postnatal Care ◽  
Qualitative Content Analysis ◽  
Perinatal Care ◽  
Healthcare Services ◽  
Japanese Women ◽  
Structured Interviews ◽  
Related Information ◽  
Care Services ◽  
Japanese Residents ◽  
Childbirth Experiences

Abstract Background:Maternal healthcare services in Indonesia have seen dramatic improvements over the past 25 years and yet there is still room for improvement. The perception,by the women,of the perinatalcare provided,is a vital input to further improving theseservices. This study examineshow the perinatal care provided is experienced by Japanese women in Bali, using an interview survey.Methods:We conducted semi-structured interviews, from August to October 2017, with 14 Japanese women living in Badung Regency and Denpasar City in Bali Province, Indonesia to reporttheir perception of the perinatal care they experienced during their pregnancies. The interview guide included among others, the reasons for choosing specific (perinatal care) health facilities and their satisfaction with their experience of using the antenatal, delivery, and postnatal care services. The data were analysed using the qualitative content analysis method.Results:From the interview data, 12 categories across five themes were extracted. Participants reported experiencing various concerns during their pregnancies such as difficulty in obtaining perinatal care related information. Participants,from the beginning of their pregnancies gradually establishedtrusting relationships with midwives, but in many situations, they were disappointed with their childbirth experiences, as they felt that the care provided was not woman-centred.Through their own efforts and with the support of family members and other Japanese residents, many women were able to eventually consider their childbirth experiences as positive. Nonetheless, some women could not overcome their negative impressions even years after childbirth.Conclusions:Participants desired close attention and encouragement from nurses and midwives. Our results suggest that Japanese women in Bali expected a woman-centred perinatal care and active support from nursing/midwifery staff during their pregnancies and postnatal care.

Understanding Ovarian Cancer Patients’ Information Needs About Genetic Testing to Inform Intervention Design (Preprint)

2021 ◽  
Author(s):  
Yan Zhang ◽  
Siqi Yi ◽  
Ciaran B. Trace ◽  
Marian Yvette Williams-Brown
Keyword(s):  
Ovarian Cancer ◽  
Genetic Testing ◽  
Online Community ◽  
Information Needs ◽  
Cancer Genetics ◽  
Qualitative Content Analysis ◽  
Healthcare Providers ◽  
Medical Test ◽  
Related Information ◽  
To Receive

BACKGROUND All patients with invasive or high-grade ovarian cancer (OC) are recommended to take genetic testing (GT). However, the GT uptake rate among OC patients remains inadequate. The existing genetic counseling (GC) falls short in adequately addressing this challenge. Communication of information concerning cancer genetics and genetic services to patients needs to be improved to address patients’ GT-related literacy gaps and risk concerns. OBJECTIVE The study aims to investigate OC patients’ GT-related information needs to inform the design of interactive technology-based interventions that can enhance patients’ knowledge of GT and cancer genetics. METHODS We interviewed 20 OC patients who had taken GT and gathered GT-related messages from an active OC online community. The interview transcripts and online community messages were analyzed using the qualitative content analysis method. RESULTS Data analyses produced a comprehensive taxonomy of OC patients’ GT-related information needs, which includes five major topic clusters: knowledge of GT as a medical test, GT process, GT’s implications for patients, implications for family members, and medical terminologies. Patients want to receive information that is relevant, understandable, concise, usable, appropriate, hopeful, and accessible when needed. They prefer different channels to receive information, including interactive internet-based technologies, print, and conversations with healthcare providers. CONCLUSIONS OC patients need a range of information to address uncertainties and challenges that they encounter while taking GT. Their preferences for channels to receive information varied widely. A multi-channel information delivery solution that supplements the existing GC is needed to effectively deliver such interventions to meet OC patients’ GT-related information needs.

scholarly journals Perception of childbirth experiences of Japanese women in Bali, Indonesia: A qualitative study

2020 ◽  
Author(s):  
Kazuko Tanaka ◽  
Ni Made Dian Kurniasari ◽  
Desak Nyoman Widyanthini ◽  
Ni Luh Putu Suariyani ◽  
Rina Listyowati ◽  
...  
Keyword(s):  
Postnatal Care ◽  
Qualitative Content Analysis ◽  
Perinatal Care ◽  
Healthcare Services ◽  
Japanese Women ◽  
Structured Interviews ◽  
Related Information ◽  
Care Services ◽  
Japanese Residents ◽  
Childbirth Experiences

Abstract Background: Maternal healthcare services in Indonesia have seen dramatic improvements over the past 25 years and yet there is still room for improvement. The perception, by the women, of the perinatal care provided, is a vital input to further improving these services. This study examines how the perinatal care provided is experienced by Japanese women in Bali, using an interview survey.Methods: We conducted semi-structured interviews, from August to October 2017, with 14 Japanese women living in Badung Regency and Denpasar City in Bali Province, Indonesia to report their perception of the perinatal care they experienced during their pregnancies. The interview guide included among others, the reasons for choosing specific (perinatal care) health facilities and their satisfaction with their experience of using the antenatal, delivery, and postnatal care services. The data were analysed using the qualitative content analysis method.Results: From the interview data, 12 categories across five themes were extracted. Participants reported experiencing various concerns during their pregnancies such as difficulty in obtaining perinatal care related information. From the beginning of their pregnancies, participants gradually established trusting relationships with midwives, but in many situations, they were disappointed with their childbirth experiences, as they felt that the care provided was not woman-centred. Through their own efforts and with the support of family members and other Japanese residents, many women were able to eventually regard their childbirth experiences as positive. Nevertheless, some women could not overcome their negative impressions even years after childbirth.Conclusions: Participants desired close attention and encouragement from nurses and midwives. Our results suggest that Japanese women in Bali expected a woman-centred perinatal care and active support from nursing/midwifery staff during their pregnancies and postnatal care.

scholarly journals Perception of childbirth experiences of Japanese women in Bali, Indonesia: A qualitative study

2020 ◽  
Author(s):  
Kazuko Tanaka ◽  
Ni Made Dian Kurniasari ◽  
Desak Nyoman Widyanthini ◽  
Ni Luh Putu Suariyani ◽  
Rina Listyowati ◽  
...  
Keyword(s):  
Postnatal Care ◽  
Qualitative Content Analysis ◽  
Perinatal Care ◽  
Healthcare Services ◽  
Japanese Women ◽  
Structured Interviews ◽  
Related Information ◽  
Care Services ◽  
Japanese Residents ◽  
Childbirth Experiences

Abstract Background: Maternal healthcare services in Indonesia have seen dramatic improvements over the past 25 years and yet there is still room for improvement. The perception, by the women, of the perinatal care provided, is a vital input to further improving these services. This study examines how the perinatal care provided is experienced by Japanese women in Bali, using an interview survey.Methods: We conducted semi-structured interviews, from August to October 2017, with 14 Japanese women living in Badung Regency and Denpasar City in Bali Province, Indonesia to report their perception of the perinatal care they experienced during their pregnancies. The interview guide included among others, the reasons for choosing specific (perinatal care) health facilities and their satisfaction with their experience of using the antenatal, delivery, and postnatal care services. The data were analysed using the qualitative content analysis method.Results: From the interview data, 12 categories across five themes were extracted. Participants reported experiencing various concerns during their pregnancies such as difficulty in obtaining perinatal care related information. From the beginning of their pregnancies, participants gradually established trusting relationships with midwives, but in many situations, they were disappointed with their childbirth experiences, as they felt that the care provided was not woman-centred. Through their own efforts and with the support of family members and other Japanese residents, many women were able to eventually regard their childbirth experiences as positive. Nevertheless, some women could not overcome their negative impressions even years after childbirth.Conclusions: Participants desired close attention and encouragement from nurses and midwives. Our results suggest that Japanese women in Bali expected a woman-centred perinatal care and active support from nursing/midwifery staff during their pregnancies and postnatal care.

scholarly journals “We can’t get stuck in old ways”: Swedish sports club’s integration efforts with children and youth in migration

2021 ◽  
Vol 0 (0) ◽  
Author(s):  
Krister Hertting ◽  
Inger Karlefors
Keyword(s):  
Personal Development ◽  
Social Connectedness ◽  
Qualitative Content Analysis ◽  
Children And Youth ◽  
Structured Interviews ◽  
Sports Clubs ◽  
Everyday Activities ◽  
Club Sports ◽  
Swedish Society ◽  
To Receive

Abstract The last years many people have been forcibly displaced due to circumstances such as conflicts in the world, and many people have come to Sweden for shelter. It has been challenging for Swedish society to receive and guide newcomers through the resettlement process, and many organizations in civil society, such as sports clubs, have been invited to support the resettlement. However, a limited numbers of studies has drawn the attention to sports clubs experiences. Therefore the aim of the paper was enhance understanding of sports clubs’ prerequesites and experiences of integration efforts with immigrant children and youth. Ten Swedish clubs with experience of working with newcomers participated. Semi-structured interviews were conducted, and analyzed with qualitative content analysis. Two categories were identified: Struggling with sporting values and organization and Seeing integration in everyday activities. The clubs experienced that integration occurs in everyday activities, but current ideas focusing competition and rigid organization of sports constrained possibilities for integrating newcomers with no or limited former experience of club sports. The clubs experienced potential to contribute to personal development, social connectedness and enjoyment in a new society and building bridges between cultures. In conclusion, clubs cannot solve the challenges of resettlement in society but have potential to be part of larger societal networks of integration.

scholarly journals Perception of childbirth experiences of Japanese women in Bali, Indonesia: a qualitative study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Kazuko Tanaka ◽  
Ni Made Dian Kurniasari ◽  
Desak Nyoman Widyanthini ◽  
Ni Luh Putu Suariyani ◽  
Rina Listyowati ◽  
...  
Keyword(s):  
Postnatal Care ◽  
Qualitative Content Analysis ◽  
Perinatal Care ◽  
Healthcare Services ◽  
Japanese Women ◽  
Structured Interviews ◽  
Related Information ◽  
Care Services ◽  
Japanese Residents ◽  
Childbirth Experiences

Abstract Background Maternal healthcare services in Indonesia have seen dramatic improvements over the past 25 years and yet there is still room for improvement. The perception, by the women, of the perinatal care provided, is a vital input to further improving these services. This study examines how the perinatal care provided is experienced by Japanese women in Bali, using an interview survey. Methods We conducted semi-structured interviews, from August to October 2017, with 14 Japanese women living in Badung Regency and Denpasar City in Bali Province, Indonesia to report their perception of the perinatal care they experienced during their pregnancies. The interview guide included among others, the reasons for choosing specific (perinatal care) health facilities and their satisfaction with their experience of using the antenatal, delivery, and postnatal care services. The data were analysed using the qualitative content analysis method. Results From the interview data, 12 categories across five themes were extracted. Participants reported experiencing various concerns during their pregnancies such as difficulty in obtaining perinatal care related information. From the beginning of their pregnancies, participants gradually established trusting relationships with midwives, but in many situations, they were disappointed with their childbirth experiences, as they felt that the care provided was not woman-centred. Through their own efforts and with the support of family members and other Japanese residents, many women were able to eventually regard their childbirth experiences as positive. Nevertheless, some women could not overcome their negative impressions even years after childbirth. Conclusions Participants desired close attention and encouragement from nurses and midwives. Our results suggest that Japanese women in Bali expected a woman-centred perinatal care and active support from nursing/midwifery staff during their pregnancies and postnatal care.

Disaster Radio for Communication of Vital Messages and Health-Related Information: Experiences From the Haiyan Typhoon, the Philippines

2016 ◽  
Vol 10 (4) ◽  
pp. 591-597 ◽  
Author(s):  
Karin Hugelius ◽  
Mervyn Gifford ◽  
Per Örtenwall ◽  
Annsofie Adolfsson
Keyword(s):  
Qualitative Content Analysis ◽  
The Philippines ◽  
General Information ◽  
Related Information ◽  
Log Files ◽  
Management Measures ◽  
Health Related ◽  
Minor Part ◽  
A Minor ◽  
Over Time

AbstractObjectiveCrisis communication is seen as an integrated and essential part of disaster management measures. After Typhoon Haiyan (Yolanda) in the Philippines 2013, radio was used to broadcast information to the affected community. The aim of this study was to describe how disaster radio was used to communicate vital messages and health-related information to the public in one affected region after Typhoon Haiyan.MethodsMixed-methods analysis using qualitative content analysis and descriptive statistics was used to analyze 2587 logged radio log files.ResultsRadio was used to give general information and to demonstrate the capability of officials to manage the situation, to encourage, to promote recovery and foster a sense of hope, and to give practical advice and encourage self-activity. The content and focus of the messages changed over time. Encouraging messages were the most frequently broadcast messages. Health-related messages were a minor part of all information broadcast and gaps in the broadcast over time were found.ConclusionDisaster radio can serve as a transmitter of vital messages including health-related information and psychological support in disaster areas. The present study indicated the potential for increased use. The perception, impact, and use of disaster radio need to be further evaluated. (Disaster Med Public Health Preparedness. 2016;10:591–597)

scholarly journals Preferences to receive unsolicited findings of germline genome sequencing in a large population of patients with cancer

ESMO Open ◽  
2020 ◽  
Vol 5 (2) ◽  
pp. e000619 ◽  
Author(s):  
Rhode Bijlsma ◽  
Roel Wouters ◽  
Hester Wessels ◽  
Stefan Sleijfer ◽  
Laurens Beerepoot ◽  
...  
Keyword(s):  
Genome Sequencing ◽  
Large Population ◽  
General Information ◽  
Structured Interviews ◽  
Substantial Impact ◽  
Patients With Cancer ◽  
Whole Exome ◽  
Unknown Significance ◽  
To Receive ◽  
Actionable Variants

BackgroundIn precision medicine, somatic and germline DNA sequencing are essential to make genome-guided treatment decisions in patients with cancer. However, it can also uncover unsolicited findings (UFs) in germline DNA that could have a substantial impact on the lives of patients and their relatives. It is therefore critical to understand the preferences of patients with cancer concerning UFs derived from whole-exome (WES) or whole-genome sequencing (WGS).MethodsIn a quantitative multicentre study, adult patients with cancer (any stage and origin of disease) were surveyed through a digital questionnaire based on previous semi-structured interviews. Background knowledge was provided by showing two videos, introducing basic concepts of genetics and general information about different categories of UFs (actionable, non-actionable, reproductive significance, unknown significance).ResultsIn total 1072 patients were included of whom 701 participants completed the whole questionnaire. Overall, 686 (85.1%) participants wanted to be informed about UFs in general. After introduction of four UFs categories, 113 participants (14.8%) changed their answer: 718 (94.2%) participants opted for actionable variants, 537 (72.4%) for non-actionable variants, 635 (87.0%) participants for UFs of reproductive significance and 521 (71.8%) for UFs of unknown significance. Men were more interested in receiving certain UFs than women: non-actionable: OR 3.32; 95% CI 2.05 to 5.37, reproductive significance: OR 1.97; 95% CI 1.05 to 3.67 and unknown significance: OR 2.00; 95% CI 1.25 to 3.21. In total, 244 (33%) participants conceded family members to have access to their UFs while still alive. 603 (82%) participants agreed to information being shared with relatives, after they would pass away.ConclusionOur study showed that the vast majority of patients with cancer desires to receive all UFs of genome testing, although a substantial minority does not wish to receive non-actionable findings. Incorporation of categories in informed consent procedures supports patients in making informed decisions on UFs.

scholarly journals Exploring the experiences related to postpartum changes: perspectives of mothers and healthcare providers in Iran

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Mahboobeh Asadi ◽  
Mahnaz Noroozi ◽  
Mousa Alavi
Keyword(s):  
Postpartum Period ◽  
Qualitative Content Analysis ◽  
Healthcare Providers ◽  
Educational Interventions ◽  
Psychological State ◽  
Structured Interviews ◽  
Childbearing Age ◽  
New Period ◽  
Women's Lives ◽  
Field Notes

Abstract Background Numerous changes occur in different aspects of women’s lives in the postpartum period. Women’s adjusting with problems and taking advantage of this opportunity can develop their personality. In this regard, accurate knowledge of their experiences and feelings is necessary to help them to benefit from this period. Therefore, the present study aimed to explore the experiences related to postpartum changes in women. Methods In the present qualitative study, 23 participants, including women of childbearing age who gave birth and healthcare providers (midwives and obstetricians) in Isfahan, Iran were selected using purposive sampling with a maximum variation strategy. Data were collected through in-depth semi structured interviews, field notes, and daily notes, and simultaneously analyzed using the conventional qualitative content analysis. Results The data analysis results led to the extraction of three main categories including “feeling of decreased female attractiveness” (with two sub-categories of “ feeling of decreased beauty” and “feeling of decreased sexual function”), “feeling of insolvency and helplessness” (with two sub-categories of “physical burnout”, and “mental preoccupations”) and “beginning a new period in life” (with three sub-categories of “changing the meaning of life”, “feeling of maturity” and “deepening the communication”). Conclusions Findings of this study can provide a good context for designing interventions to improve the women’s quality of life by explaining and highlighting their experiences in the postpartum period. In this regard, providing sufficient empathy, social and psychological support from family members (especially husband), performing appropriate educational interventions and also regular assessment of women’s psychological state by healthcare providers in postpartum period can reduce their concerns and help to improve their health.

scholarly journals PARE0023 ORAL HEALTH IN RHEUMATOID ARTHRITIS: LISTENING TO PATIENTS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1297.2-1297
Author(s):  
J. Protudjer ◽  
C. Billedeau ◽  
C. Stavropoulou ◽  
A. Cholakis ◽  
R. Schroth ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Oral Health ◽  
Periodontal Disease ◽  
Oral Care ◽  
Structured Interviews ◽  
Face To Face ◽  
Oral Health Education ◽  
To Receive ◽  
Latent Content

Background:Rates of periodontal disease and tooth loss are increased in rheumatoid arthritis (RA). Periodontal disease may exacerbate RA inflammation and complicate RA care. Understanding factors that contribute to the increased burden of periodontal disease in RA is critical to improving oral health and possibly arthritis outcomes. People with RA may have unique needs and/or barriers to maintain oral health.Objectives:To determine from people with RA what are their experiences and perceptions about their oral health, their most important questions relating to oral health, and how they wish to receive oral health information.Methods:Semi-structured interviews were conducted with RA patients. Recorded interview transcripts underwent iterative content analysis. Transcripts were initially reviewed to develop a coding guide. Latent content, or larger themes, were then applied to the transcripts. Constructs were considered saturated when no new themes were identified with subsequent interviews. We report identified themes with representative quotes.Results:Interviews with 11 RA (10[91%] female; all on RA medication) averaged 19 minutes (range 8-31 minutes) and were mostly conducted face-to-face. Many believed RA medication contributed to dry mouth. Most participants had not previously considered other links between oral health and RA. Themes identified included the need for complicated oral health routines, barriers of cost and access to dental care, and shame relating to oral health (Table 1). Participants preferred to receive oral health education from their rheumatologists or dentists over printed or online resources.Conclusion:RA patients have unique needs relating to oral health and report poor oral quality of life. Strategies to optimize oral health in RA may include educational tools for optimizing oral self-care appropriate for RA, and improved access to oral care professionals who are aware of the needs of arthritis patients.Disclosure of Interests:Jennifer Protudjer: None declared, Corrie Billedeau: None declared, Chrysi Stavropoulou: None declared, Anastasia Cholakis: None declared, Robert Schroth: None declared, Carol Hitchon Grant/research support from: UCB Canada; Pfizer Canada

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