scholarly journals An international mixed methods study to develop a new preference-based measure for women with breast cancer: the BREAST-Q Utility module

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Manraj N. Kaur ◽  
Anne F. Klassen ◽  
Feng Xie ◽  
Louise Bordeleau ◽  
Toni Zhong ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Mixed Methods ◽  
Conceptual Framework ◽  
Field Test ◽  
Well Being ◽  
Economic Evaluations ◽  
Structured Interviews ◽  
Image Appearance ◽  
Test Version ◽  
Cancer Experience

Abstract Background Generic preference-based measures (PBM), though commonly used, may not be optimal for use in economic evaluations of breast cancer interventions. No breast cancer-specific PBM currently exists, and the generic PBMs fail to capture the unique concerns of women with breast cancer (e.g., body image, appearance, treatment-specific adverse effects). Hence, the objective of this study was to develop a breast cancer-specific PBM, the BREAST-Q Utility module. Methods Women diagnosed with breast cancer (stage 0–4, any treatment) were recruited from two tertiary hospitals in Canada and one in the US. The study followed an exploratory sequential mixed methods approach, whereby semi-structured interviews were conducted and at the end of the interview, participants were asked to list their top five health-related quality of life (HRQOL) concerns and to rate the importance of each item on the BREAST-Q. Interviews were audio-recorded, transcribed verbatim, and coded. Constant comparison was used to refine the codes and develop a conceptual framework. Qualitative and quantitative data were triangulated to develop the content of the Utility module  that was refined through 2 rounds of cognitive debriefing interviews with women diagnosed with breast cancer and feedback from experts. Results Interviews were conducted with 57 women aged 55 ± 10 years. A conceptual framework was developed from 3948 unique codes specific to breasts, arms, abdomen, and cancer experience. Five top-level domains were HRQOL (i.e., physical, psychological, social, and sexual well-being) and appearance. Data from the interviews, top 5 HRQOL concerns, and BREAST-Q item ratings were used to inform dimensions for inclusion in the Utility module. Feedback from women with breast cancer (N = 9) and a multidisciplinary group of experts (N = 27) was used to refine the module. The field-test version of the HSCS consists of 10 unique dimensions. Each dimension is measured with 1 or 2 candidate items that have 4–5 response levels each. Conclusion The field-test version of the BREAST-Q Utility module was derived from extensive patient and expert input. This comprehensive approach ensured that the content of the Utility module is relevant, comprehensive, and includes concerns that matter the most to women with breast cancer.

scholarly journals Health-related quality of life among 13–14 year old adolescents with overweight - a mixed methods approach

2019 ◽  
Author(s):  
Turid Kristin Bigum Sundar ◽  
Kirsti Riiser ◽  
Milada Småstuen ◽  
Randi Opheim ◽  
Knut Løndal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Well Being ◽  
Reference Population ◽  
Health Related Quality ◽  
Structured Interviews ◽  
Post Intervention ◽  
Related Quality ◽  
Health Related

Abstract BackgroundOverweight and obesity are public concerns with risk of adverse health outcomes. Health-related quality of life (HRQoL) is lower in adolescents than children in general. An increase in body mass index (BMI) is associated with a decrease in HRQoL. The purpose of this study was to measure and explore the HRQoL among adolescents with overweight or obesity who had participated in an intervention study with the aim of increasing PA, reducing BMI and promoting HRQoL.Methods Mixed methods, with a convergent design, were used to investigate how different methodological approaches could expand our understanding of the adolescents’ HRQoL. Quantitative post-intervention data on HRQoL were collected among the 84 intervention participants, aged 13–14 years, using the KIDSCREEN 52 questionnaire. The data were compared with a Norwegian reference population of 244 individuals, and analysed using a non-parametric Mann-Whitney test. Qualitative semi-structured interviews were conducted with 21 adolescents from the intervention. A directed approach to content analysis was adopted, using the ten sub-scales from KIDSCREEN 52.ResultsHRQoL in the intervention sample was significantly reduced on the sub-scale of physical well-being compared to the reference population. The reference population scored significantly lower than the intervention sample on the sub-scale of parent relation and home life. No significant differences were found on the other sub-scales. The qualitative data supported the quantitative findings on the sub-scale of physical well-being, but showed that perceptions of fitness, energy level or health could vary. Regarding parent relations, the interviewees extended this to include relationships to other family members as equally important. Most of the interviewees expressed a negative view of their bodies, but not their clothing or accessories. This may explain why no statistically significant differences were found on these aspects in the results from the KIDSCREEN questionnaire. ConclusionThe use of the KIDSCREEN 52 instrument gave important indications about the adolescents’ HRQoL. Combining methods enabled a comprehensive approach to research on HRQoL, indicating better ways of providing help. More research using the benefits of mixed methods approaches is needed to further elucidate these findings.

scholarly journals Participating in a support group: experience lived by women with breast cancer

2008 ◽  
Vol 16 (4) ◽  
pp. 733-738 ◽  
Author(s):  
Cleoneide Paulo Oliveira Pinheiro ◽  
Raimunda Magalhães da Silva ◽  
Marli Villela Mamede ◽  
Ana Fátima Carvalho Fernandes
Keyword(s):  
Breast Cancer ◽  
Breast Carcinoma ◽  
Support Groups ◽  
Support Group ◽  
Well Being ◽  
Self Esteem ◽  
Structured Interviews ◽  
The City ◽  
Group Experience ◽  
Differentiated Care

The goal of the study was to understand the meaning of support groups in the life of women with breast cancer. It is a qualitative study with 30 mastectomized women who belonged to six support groups in the city of Fortaleza, Ceará. Data were collected with semi-structured interviews, organized and analyzed based on the interactionism concept. The results characterized the support groups as a mechanism to cope with the situation and to overcome the suffering derived from the diagnosis and treatment of the breast carcinoma. The socialization of the experiences facilitated the search for assistance in the support groups, since sharing the problems with mastectomized women was a way to preserve a high self-esteem, have faith and overcome some difficulties. Participating in the group provided well-being and a differentiated care, since it was considered a way to know, accept and understand the disease and its cure, facilitating the socialization of ideas.

How do women with secondary breast cancer experience telling their adolescent children about their diagnosis?

2016 ◽  
Vol 23 (9) ◽  
pp. 1223-1233 ◽  
Author(s):  
Leonie Lalayiannis ◽  
Nicky Asbury ◽  
Graham Dyson ◽  
Amanda Walshe
Keyword(s):  
Breast Cancer ◽  
Cancer Diagnosis ◽  
Interpretative Phenomenological Analysis ◽  
Breast Cancer Diagnosis ◽  
Phenomenological Analysis ◽  
Primary Cancer ◽  
Structured Interviews ◽  
Cancer Experience ◽  
Secondary Breast Cancer ◽  
The Impact

This study investigated how women with secondary breast cancer experience telling their adolescent children. Semi-structured interviews were conducted with women who had been diagnosed with secondary breast cancer at least 1 year prior to the interview. Seven women, who had at least one child between 12 and 19 years old living at home at the time of diagnosis, were interviewed. The interviews were analysed using interpretative phenomenological analysis for an in-depth understanding of women’s experiences. Women found that it was easier to tell their children of their secondary breast cancer diagnosis compared to their primary cancer. However, they talked about the impact the diagnosis had on their family.

“I Had to Make Them Feel at Ease”: Narrative Accounts of How Women With Breast Cancer Navigate Social Support

2021 ◽  
pp. 104973232198999
Author(s):  
Jaime D. Wright ◽  
Candyce H. Kroenke ◽  
Marilyn L. Kwan ◽  
Lawrence H. Kushi
Keyword(s):  
Breast Cancer ◽  
Social Support ◽  
Lived Experiences ◽  
Well Being ◽  
Information Control ◽  
Structured Interviews ◽  
Cognitive Reframing ◽  
Social Scientific ◽  
Emotional Strain ◽  
Analysis Of Narratives

Social scientific studies of social support predominantly focus on the positive associations between social support and emotional well-being. The negative aspects of social support have received much less attention. We conducted semi-structured interviews of women with breast cancer ( n = 47) to examine the emotional strain associated with social support and how recipients navigate it in ways that protect themselves and their relationships. Based on our analysis of narratives of women’s lived experiences of breast cancer, we found that social support can be perceived negatively and associated with experiences of emotional strain. Interviewees engaged in strategies of avoidance, information control, and cognitive reframing to minimize emotional strain. We applied the concept of emotion work to understand the complexity of emotional strain in this context. The findings highlight the difficulties of social support from a recipient’s perspective and emphasize the importance of perception and agency in navigating this experience.

scholarly journals Smoking Cessation in Head and Neck Cancer Patients: A Mixed Methods Study

2020 ◽  
Author(s):  
Justin R Smith ◽  
Torres Woolley ◽  
Amy Brown ◽  
Venkat Vangaveti ◽  
Madhavi Chilkuri
Keyword(s):  
Smoking Cessation ◽  
Head And Neck Cancer ◽  
Mixed Methods ◽  
Head And Neck ◽  
Cancer Patients ◽  
Neck Cancer ◽  
Health Knowledge ◽  
Smoking Status ◽  
Well Being ◽  
Structured Interviews

Abstract Background This study investigated the smoking behaviours and cessation rates of head and neck cancer patients and explored the barriers and facilitators to cessation. Methods A mixed methods sequential explanatory design was utilised. The quantitative data was collected through surveys prior to treatment commencement. The current smokers were followed up after treatment to determine their smoking status. One-on-one, semi-structured interviews were then conducted. Results A total of 64 participants were recruited. Participants who were current smokers were more likely to live in a rural location (p = 0.015), have lower education (p = 0.047), and report reduced social and family well-being (p = 0.005) when compared with those who were former or never smokers. The 7-day point prevalence cessation rate was 72% at 1-month follow-up and 67% at 3 months, while continuous smoking cessation was 54% at 1 month and 42% at 3 months. Participants who continued smoking were found to consume more alcohol (p = 0.032) and have higher psychological distress (p = 0.052). Qualitative analysis revealed 5 key themes associated with smoking cessation: the teachable moment of a cancer diagnosis and treatment, willpower and cessation aids, psychosocial environment, relationship with alcohol and marijuana, and health knowledge and beliefs surrounding smoking and cancer. Conclusion This study demonstrates that the majority of head and neck cancer patients are able to achieve smoking cessation, but relapses are common. Future cessation programs should be comprehensive, sustained and address co-morbid factors such as alcohol, marijuana and depression.

scholarly journals Lived Experience of Women Suffering from Breast Cancer about the Meaning of Life: Evidences from the Society of Iranian Women.

2020 ◽  
Author(s):  
Leila Mokhtari ◽  
Aram Feizi ◽  
Hamid Reza Khalkhali ◽  
Abdollah Khorami Markani
Keyword(s):  
Breast Cancer ◽  
Lived Experience ◽  
Qualitative Content Analysis ◽  
Meaning Of Life ◽  
Well Being ◽  
Structured Interviews ◽  
Personal Belief ◽  
Middle Range ◽  
Spiritual Well Being ◽  
Range Theory

Abstract Background The meaning of life is of great importance in upgrading various dimensions of the quality of life in women with breast cancer. Therefore, the present study aims to find out and describing the meaning of life for women with breast cancer on the bases of their life experiences.Methods In this qualitative study, 22 women with breast cancer were selected following purposive sampling. The data were collected via semi-structured interviews and then were analyzed by the Directed Qualitative Content Analysis according to the Middle-Range Theory of Spiritual Well-Being in Illness and Graneheim and Lundman’s (2004) approach using MAXQDA software, version10.Results Two themes and 10 categories have appeared. 7 categories in the “development in the process of life” theme include: feeling the change in the life routine, achieving a better recognition of the life value, relative life satisfaction despite the illness, hope and acceptance on the ending of the illness, trying to cope with the illness, tolerating the pain and suffering from illness, worrying about future of the children. 3 categories in the “the attempt to upgrade spiritual well-being” themes include: personal belief, spiritual contentment and religious acts.Conclusion The meaning of life in these women includes the development in the process of life and the attempt to upgrade spiritual well-being. These findings could be beneficial as a conceptual basis for explaining the concepts in other studies and designing intervention models and even carrying out supporting actions for this group of women. So, the health system must include spirituality and build a proper relationship with these patients.

scholarly journals The Central Role of Peers Facilitators in the Empowerment of Breast Cancer Patients: A Qualitative Study

2021 ◽  
Author(s):  
Béatrice LOGNOS ◽  
isabelle Boulze-Launay ◽  
Elodie Million ◽  
Gérard Bourrel ◽  
Michel Amouyal ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Professionals ◽  
Phenomenological Study ◽  
Well Being ◽  
Mutual Aid ◽  
Breast Cancer Patients ◽  
Online Forums ◽  
Structured Interviews ◽  
Qualitative Phenomenological

Abstract Background In 2020, the number of new cancer cases was estimated at 20 490 862 worldwide up from 18.1 million in 2018 and 14.1 million in 2012. Since the 2000s, cancer treatments have significantly improved, allowing either a cure or control of the disease. Patients share their experience of the disease and use supportive care solutions through involvement in patient associations and online forums. All the associations were built on the principle of “peer support,” which is based on mutual aid between people who suffer or have suffered from the same somatic or psychological illness or had the same life experience.This experiential knowledge can be explored to understand the role of peers and associations in the appropriation of their cancer Methods: A qualitative phenomenological study was undertaken through semi-structured interviews with 12 participants. Interviews were audio-recorded, transcribed verbatim, then analyzed by means of triangulation up to the point of theoretical saturation, by a semio-pragmatic method. Results: Four categories emerged: (1) “Transforms a painful experience into a positive one. It mobilizes the human values of sharing, love, and humility, which facilitates resilience”; (2) “The characteristics of the association, a non-medical place between people sharing a common destiny, resonates with patients’ needs and improves their well-being”; (3) “The association transforms the patients’ experiences by facilitating engagement that leads to a patient-expert (empowerment)”; and (4) “Understanding what is happening to them is soothing, reassuring, because patients’ concerns need to be heard ant their care understood”.Conclusions: This study highlights patient associations can serve as the mediator of NPI and facilate the empowerment of breast cancer patient Practice implications: Educating health professionals in initial and continuing education about non-pharmacological interventions will be a major issue. Teaching the patient-centred approach to health professionals is one of the priorities in initial and continuing medical education.

scholarly journals The Perceived Social Support by Iranian Women with Breast Cancer: A Qualitative Study

2021 ◽  
Author(s):  
Leila Mokhtari ◽  
Abdollah Khorami Markani ◽  
Hamid Reza Khalkhali ◽  
Aram Feizi
Keyword(s):  
Breast Cancer ◽  
Social Support ◽  
Qualitative Study ◽  
Lived Experience ◽  
Qualitative Content Analysis ◽  
Healthcare Providers ◽  
Well Being ◽  
Medical Sciences ◽  
Structured Interviews ◽  
The Family

Abstract Background: Social support has an importnat role in improving health outcomes and is considered as one of the crucial aspects of the modern care in cancer patients. Therefore this article aims at discovering and describing the dimensions of social support based on the lived experience of women suffering from breast cancer.Methods: In this qualitative study, 22 women with breast cancer were selected through purposive sampling from 7 hospitals affiliated to Urmia University of Medical Sciences. The data were collected through semi-structured interviews and were analyzed by the Conventional Qualitative Content Analysis and Graneheim’s and Lundman’s (2004) approach, using MAXQDA software, version 10.Results: After completion of the analyzing process, 6 categories were appeared including “creating an empathic atmosphere by family and community”, “creating a safe communication network for the patient”, “adaption to disease”, “giving meaning to life”, “the feeling of satisfaction with the healthcare providers for fulfilling their role”, and “accepting the support and help of family and friends in fighting the disease”. Conclusion: According to the findings, good social support during the illness can result in the spiritual, mental, and physical well-being of the patients and is one of the most effective factors in fighting the disease and feeling of recovery. The findings of this study can be used to develop plans to help the patients to achieve more support from the family, healthcare providers and the community and even providing the required supportive care for this group of women.

scholarly journals Exploring the Needs and Concerns of Women with Early Breast Cancer during Chemotherapy: Valued Outcomes during a Course of Traditional Acupuncture

2013 ◽  
Vol 2013 ◽  
pp. 1-7 ◽  
Author(s):  
S. Price ◽  
A. F. Long ◽  
M. Godfrey
Keyword(s):  
Breast Cancer ◽  
Well Being ◽  
Complementary Therapy ◽  
Symptom Clusters ◽  
Whole Person ◽  
Before And After ◽  
Life Threatening ◽  
Cancer Experience ◽  
Symptom Changes ◽  
To Receive

Women diagnosed with breast cancer experience symptom clusters in addition to existential issues from a life-threatening diagnosis during chemotherapy. A complementary therapy, such as traditional acupuncture (TA) with its whole-person orientation, may help to modify these effects, alongside inducing other patient benefits. Exploring the needs and concerns of women and perceived benefits of TA would add to knowledge about its integrative treatment potential.Methods. A longitudinal qualitative study recruited fourteen women to receive up to ten sessions of TA during chemotherapy. They were interviewed before, during, and after chemotherapy. Two practitioners of TA delivered treatment and were interviewed before and after the study, and kept treatment logs and diaries. Interviews were recorded and transcribed, and the data were analysed using grounded theory.Findings. Both broad and specific benefits were reported by the women; a highly valued outcome was enabling coping through the alleviation of symptoms and increased well-being. Practitioners dealt with the presented symptom clusters facilitating outcome patterns, including and beyond individual symptom changes. Further research on TA as a flexible intervention able to respond to the changing needs and concerns of woman during chemotherapy along with the measure of such outcome patterns is warranted.

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