scholarly journals Challenges in the cultural adaptation of the German Myeloma Patient Outcome Scale (MyPOS): an outcome measure to support routine symptom assessment in myeloma care

2019 ◽  
Author(s):  
Christina Gerlach ◽  
Kathy Taylor ◽  
Marion Ferner ◽  
Markus Munder ◽  
Martin Weber ◽  
...  
Keyword(s):  
Patient Outcome ◽  
Health Care ◽  
Focus Groups ◽  
Cultural Adaptation ◽  
Health Care Professionals ◽  
Outcome Measure ◽  
Routine Care ◽  
Cognitive Interviews ◽  
Myeloma Patient ◽  
Forward Translation

Abstract Background Patients with multiple myeloma report more problems with quality of life (QoL) than other haematological malignancies over the course of their incurable illness. The patient-centred Myeloma Patient Outcome Scale (MyPOS) was developed to assess and monitor symptoms and supportive care factors in routine care. Our aim was to translate and culturally adapt the outcome measure to the German context, and to explore its face and content validity. Methods Translation and cultural adaptation following established guidelines used an exploratory, sequential mixed method study design. Steps included: (1) forward translation to German; (2) backward translation to English; (3) expert review; (4) focus groups with the target population (patients, family members, health care professionals) to achieve conceptual equivalence; (5) cognitive interviews using Tourangeau’s model with think-aloud technique to evaluate comprehension and acceptability; (6) final review. Results were analysed using thematic analysis. Results Cultural and linguistic differences were noted between the German and English original version. The focus groups (n = 11) and cognitive interviews (n = 9) both highlighted the need for adapting individual items and their answer options to the German health care context. Greater individuality regarding need for information with the right to not be informed was elaborated by patients. While the comprehensive nature of the tool was appreciated, item wording regarding satisfaction with health care was deemed not appropriate in the German context. For implementation into routine care, careful handling of data was addressed as a barrier, whereas the MyPOS itself was perceived as a facilitator/prompt for a patient-centred discussion of QoL issues. Conclusion With adaptations to answer options and certain items, the German version of the MyPOS can help monitor symptoms and problems afflicting myeloma patients over the course of the disease trajectory. It can help promote a model of comprehensive supportive and patient-centred care for these patients.

scholarly journals Challenges in the cultural adaptation of the German Myeloma Patient Outcome Scale (MyPOS): an outcome measure to support routine symptom assessment in myeloma care

2020 ◽  
Author(s):  
Christina Gerlach ◽  
Katherine Taylor ◽  
Marion Ferner ◽  
Markus Munder ◽  
Martin Weber ◽  
...  
Keyword(s):  
Patient Outcome ◽  
Focus Groups ◽  
Cultural Adaptation ◽  
Outcome Measure ◽  
Symptom Assessment ◽  
Target Population ◽  
Routine Care ◽  
Cognitive Interviews ◽  
Myeloma Patient ◽  
Forward Translation

Abstract Background: Patients with multiple myeloma report more problems with quality of life (QoL) than other haematological malignancies over the course of their incurable illness. The patient-centred Myeloma Patient Outcome Scale (MyPOS) was developed to assess and monitor symptoms and supportive care factors in routine care. Our aim was to translate and culturally adapt the outcome measure to the German context, and to explore its face and content validity.Methods: Translation and cultural adaptation following established guidelines used an exploratory, sequential mixed method study design. Steps included: (1) forward translation to German; (2) backward translation to English; (3) expert review; (4) focus groups with the target population (patients, family members, healthcare professionals) to achieve conceptual equivalence; (5) cognitive interviews using Tourangeau’s model with think-aloud technique to evaluate comprehension and acceptability; (6) final review. Results were analysed using thematic analysis.Results: Cultural and linguistic differences were noted between the German and English original version. The focus groups (n = 11) and cognitive interviews (n = 9) both highlighted the need for adapting individual items and their answer options to the German healthcare context. Greater individuality regarding need for information with the right to not be informed was elaborated by patients. While the comprehensive nature of the tool was appreciated, item wording regarding satisfaction with healthcare was deemed not appropriate in the German context. Before implementation into routine care, patients‘ concerns about keeping their MyPOS data confidential need to be addressed as a barrier, whereas the MyPOS itself was perceived as a facilitator/prompt for a patient-centred discussion of QoL issues. Conclusion: With adaptations to answer options and certain items, the German version of the MyPOS can help monitor symptoms and problems afflicting myeloma patients over the course of the disease trajectory. It can help promote a model of comprehensive supportive and patient-centred care for these patients.

scholarly journals Challenges in the cultural adaptation of the German Myeloma Patient Outcome Scale (MyPOS): an outcome measure to support routine symptom assessment in myeloma care

2020 ◽  
Author(s):  
Christina Gerlach ◽  
Katherine Taylor ◽  
Marion Ferner ◽  
Markus Munder ◽  
Martin Weber ◽  
...  
Keyword(s):  
Patient Outcome ◽  
Focus Groups ◽  
Cultural Adaptation ◽  
Outcome Measure ◽  
Symptom Assessment ◽  
Target Population ◽  
Routine Care ◽  
Cognitive Interviews ◽  
Myeloma Patient ◽  
Forward Translation

Abstract Background Patients with multiple myeloma report more problems with quality of life (QoL) than other haematological malignancies over the course of their incurable illness. The patient-centred Myeloma Patient Outcome Scale (MyPOS) was developed to assess and monitor symptoms and supportive care factors in routine care. Our aim was to translate and culturally adapt the outcome measure to the German context, and to explore its face and content validity. Methods Translation and cultural adaptation following established guidelines used an exploratory, sequential mixed method study design. Steps included: (1) forward translation to German; (2) backward translation to English; (3) expert review; (4) focus groups with the target population (patients, family members, healthcare professionals) to achieve conceptual equivalence; (5) cognitive interviews using Tourangeau’s model with think-aloud technique to evaluate comprehension and acceptability; (6) final review. Results were analysed using thematic analysis. Results Cultural and linguistic differences were noted between the German and English original version. The focus groups (n = 11) and cognitive interviews (n = 9) both highlighted the need for adapting individual items and their answer options to the German healthcare context. Greater individuality regarding need for information with the right to not be informed was elaborated by patients. While the comprehensive nature of the tool was appreciated, item wording regarding satisfaction with healthcare was deemed not appropriate in the German context. Before implementation into routine care, patients‘ concerns about keeping their MyPOS data confidential need to be addressed as a barrier, whereas the MyPOS itself was perceived as a facilitator/prompt for a patient-centred discussion of QoL issues. Conclusion With adaptations to answer options and certain items, the German version of the MyPOS can help monitor symptoms and problems afflicting myeloma patients over the course of the disease trajectory. It can help promote a model of comprehensive supportive and patient-centred care for these patients.

scholarly journals Challenges in the cultural adaptation of the German Myeloma Patient Outcome Scale (MyPOS): an outcome measure to support routine symptom assessment in myeloma care

BMC Cancer ◽  
2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Christina Gerlach ◽  
Katherine Taylor ◽  
Marion Ferner ◽  
Markus Munder ◽  
Martin Weber ◽  
...  
Keyword(s):  
Patient Outcome ◽  
Cultural Adaptation ◽  
Outcome Measure ◽  
Symptom Assessment ◽  
Myeloma Patient

scholarly journals Improving support for breastfeeding mothers: a qualitative study on the experiences of breastfeeding among mothers who reside in a deprived and culturally diverse community

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Erica Jane Cook ◽  
Faye Powell ◽  
Nasreen Ali ◽  
Catrin Penn-Jones ◽  
Bertha Ochieng ◽  
...  
Keyword(s):  
Health Care ◽  
Focus Groups ◽  
Health Care Professionals ◽  
Culturally Diverse ◽  
Local Community ◽  
Framework Analysis ◽  
Black African ◽  
Early Stages ◽  
Practical Support ◽  
Diverse Community

Abstract Background The United Kingdom has one of the lowest breastfeeding rates in Europe, with the initiation and continuation of breastfeeding shown to be closely related to the mothers’ age, ethnicity and social class. Whilst the barriers that influence a woman’s decision to breastfeed are well documented, less is known how these barriers vary by the UK’s diverse population. As such, this study aimed to explore mothers’ experiences of breastfeeding and accessing breastfeeding services offered locally amongst a deprived and culturally diverse community. Methods A qualitative interpretive study comprising of 63 mothers (white British n = 8, Pakistani n = 13, Bangladeshi n = 10, black African n = 15 and Polish n = 17) who took part in single-sex focus groups, conducted in local community centres across the most deprived and ethnically diverse wards in Luton, UK. The focus groups were audio-recorded, transcribed and analysed thematically using Framework Analysis. Results The most common barriers to breastfeeding irrespective of ethnicity were perceptions surrounding pain and lack of milk. Confidence and motivation were found to be crucial facilitators of breastfeeding; whereby mothers felt that interventions should seek to reassure and support mothers not only during the early stages but throughout the breastfeeding journey. Mothers particularly valued the practical support provided by health care professions particularly surrounding positioning and attachment techniques. However, many mothers felt that the support from health care professionals was not always followed through. Conclusions The findings presented inform important recommendations for the design and implementation of future programs and interventions targeted at reducing breastfeeding inequalities. Interventions should focus on providing mothers practical support and reassurance not only during the early stages but throughout their breastfeeding journey. The findings also highlight the need for tailoring services to support diverse communities which acknowledge different traditional and familial practices.

Collective soul: The spirituality of an interdisciplinary palliative care team

2006 ◽  
Vol 4 (1) ◽  
pp. 13-24 ◽  
Author(s):  
SHANE SINCLAIR ◽  
SHELLEY RAFFIN ◽  
JOSE PEREIRA ◽  
NANCY GUEBERT
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Focus Groups ◽  
Health Care Professionals ◽  
Palliative Care Team ◽  
Care Team ◽  
Cancer Center ◽  
Team Members ◽  
Spiritual Journeys ◽  
Common Goals

Objective:Although spirituality as it relates to patients is gaining increasing attention, less is known about how health care professionals (HCP) experience spirituality personally or collectively in the workplace. This study explores the collective spirituality of an interdisciplinary palliative care team, by studying how individuals felt about their own spirituality, whether there was a shared sense of a team spirituality, how spirituality related to the care the team provided to patients and whether they felt that they provided spiritual care.Methods:A qualitative autoethnographic approach was used. The study was conducted in a 10-bed Tertiary Palliative Care Unit (TPCU) in a large acute-care referral hospital and cancer center. Interdisciplinary team members of the TPCU were invited to participate in one-to-one interviews and/or focus groups. Five interviews and three focus groups were conducted with a total of 20 participants.Results:Initially participants struggled to define spirituality. Concepts of spirituality relating to integrity, wholeness, meaning, and personal journeying emerged. For many, spirituality is inherently relational. Others acknowledged transcendence as an element of spirituality. Spirituality was described as being wrapped in caring and often manifests in small daily acts of kindness and of love, embedded within routine acts of caring. Palliative care served as a catalyst for team members' own spiritual journeys. For some participants, palliative care represented a spiritual calling. A collective spirituality stemming from common goals, values, and belonging surfaced.Significance of results:This was the first known study that focused specifically on the exploration of a collective spirituality. The culture of palliative care seems to foster spiritual reflection among health care professionals both as individuals and as a whole. While spirituality was difficult to describe, it was a shared experience often tangibly present in the provision of care on all levels.

scholarly journals Two Approaches to Focus Group Data Collection for Qualitative Health Research

2018 ◽  
Vol 17 (1) ◽  
pp. 160940691775078 ◽  
Author(s):  
Rachel Flynn ◽  
Lauren Albrecht ◽  
Shannon D. Scott
Keyword(s):  
Health Care ◽  
Focus Group ◽  
Data Collection ◽  
Focus Groups ◽  
Health Care Professionals ◽  
Health Research ◽  
Qualitative Health Research ◽  
Group Data ◽  
Focus Group Data ◽  
Qualitative Focus Groups

This article discusses four challenges to conducting qualitative focus groups: (1) maximizing research budgets through innovative methodological approaches, (2) recruiting health-care professionals for qualitative health research, (3) conducting focus groups with health-care professionals across geographically dispersed areas, and (4) taking into consideration data richness when using different focus group data collection methods. In light of these challenges, we propose two alternative approaches for collecting focus group data: (a) extended period of quantitative data collection that facilitated relationship building in the sites prior to qualitative focus groups and (b) focus groups by videoconference. We share our experiences on employing both of these approaches in two national research programs.

scholarly journals Physical Activity on Prescription in Routine Health Care: 1-Year Follow-Up of Patients with and without Counsellor Support

2020 ◽  
Vol 17 (16) ◽  
pp. 5679
Author(s):  
Pia Andersen ◽  
Sara Holmberg ◽  
Kristofer Årestedt ◽  
Lena Lendahls ◽  
Per Nilsen
Keyword(s):  
Physical Activity ◽  
Health Care ◽  
Health Care Professionals ◽  
Routine Care ◽  
Interquartile Range ◽  
Activity Levels ◽  
Everyday Activity ◽  
Significant Difference ◽  
One Year

The effectiveness of counsellor support in addition to physical activity on prescription (PAP) from health care professionals has rarely been evaluated. This observational follow-up study investigated differences in physical activity levels and health-related quality of life (HRQoL) one year after PAP regarding patients’ use of counsellor support in addition to PAP in routine care. The study was conducted in a Swedish health care region in which all patients receiving PAP from health care professionals were offered counsellor support. Data were collected from medical records and questionnaires (baseline and follow-up). Of the 400 study participants, 37% used counsellor support. The group of counsellor users attained a higher level of physical activity one year after receiving PAP compared to the group of non-users (p < 0.001). The level of physical activity was measured by a validated index (score 3–19) calculated from weekly everyday activity and exercise training. Comparison of the change in scores between baseline and follow-up showed a significant difference between the two groups, (p < 0.001). The median difference in the PAP + C group was 2.0 (interquartile range, 7.0) and 0.0. among non-users (interquartile range, 4.0). Significant differences in HRQoL were due to positive improvements among counsellor users, with the main improvement in general health. The conclusion is that patients using counsellor support after receiving PAP from health care professionals had higher physical activity and better HRQoL one year after compared with patients who did not use this support.

scholarly journals Technology-Based Motivation Support for Seniors’ Physical Activity—A Qualitative Study on Seniors’ and Health Care Professionals’ Views

2019 ◽  
Vol 16 (13) ◽  
pp. 2418 ◽  
Author(s):  
Maria Ehn ◽  
Ann-Christin Johansson ◽  
Åsa Revenäs
Keyword(s):  
Physical Activity ◽  
Health Care ◽  
Focus Groups ◽  
Technology Acceptance ◽  
Health Care Professionals ◽  
Digital Technology ◽  
Behavioral Change ◽  
Well Being ◽  
Use Of Technology ◽  
User Groups

This paper investigates seniors’ and health care professionals’ (HCPs) perceptions on needed contributions and qualities of digital technology-based motivation support for seniors’ physical activity (PA). Seniors and HCPs expressed their views in focus groups, which were analyzed separately by inductive content analysis. Similarities and differences in seniors’ and HCPs’ views were identified through thematic analysis of qualitative results from both focus groups. This article’s main findings are that both seniors and HCPs believed digital technology should support and make PA more enjoyable in ways to strengthen seniors’ control and well-being. However, seniors emphasized support for social interaction, while HCPs also requested support for increasing seniors’ insight into PA and for facilitating their dialogue with seniors. Conclusions to be drawn are that seniors and HPCs shared overall views on digital technology’s main contributions but had different perspectives on how those contributions could be obtained. This highlights the importance of the early identification of user groups and exploration of their different needs when developing new solutions. Moreover, seniors’ and HCPs’ perceptions included aspects relevant for personal motivation, technology acceptance, and PA behavioral change according to self-determination theory, unified theory of acceptance and use of technology, and behavioral change techniques for increasing PA.

scholarly journals Clinical Decision-Making Tool for Safe and Effective Prescription of Exercise in Acute Exacerbations of Chronic Obstructive Pulmonary Disease: Results From an Interdisciplinary Delphi Survey and Focus Groups

2015 ◽  
Vol 95 (10) ◽  
pp. 1387-1396 ◽  
Author(s):  
Pat G. Camp ◽  
W. Darlene Reid ◽  
Frank Chung ◽  
Ashley Kirkham ◽  
Dina Brooks ◽  
...  
Keyword(s):  
Chronic Obstructive Pulmonary Disease ◽  
Health Care ◽  
Focus Groups ◽  
Pulmonary Disease ◽  
Health Care Professionals ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Chronic Obstructive ◽  
Delphi Panel ◽  
Obstructive Pulmonary Disease

Background Exercise is recommended for people with an acute exacerbation of chronic obstructive pulmonary disease (AECOPD), yet there is little information to guide safe and effective mobilization and exercise for these patients. Objectives The purpose of this study was to develop a clinical decision-making tool to guide health care professionals in the assessment, prescription, monitoring, and progression of mobilization and therapeutic exercise for patients with AECOPD. Design and Methods A 3-round interdisciplinary Delphi panel identified and selected items based on a preselected consensus of 80%. These items were summarized in a paper-based tool titled Mobilization in Acute Exacerbations of Chronic Obstructive Pulmonary Disease (AECOPD-Mob). Focus groups and questionnaires were subsequently used to conduct a sensibility evaluation of the tool. Results Nine researchers, 13 clinicians, and 7 individuals with COPD identified and approved 110 parameters for safe and effective exercise in AECOPD. These parameters were grouped into 5 categories: (1) “What to Assess Prior to Mobilization,” (2) “When to Consider Not Mobilizing or to Discontinue Mobilization,” (3) “What to Monitor During Mobilization for Patient Safety,” (4) “How to Progress Mobilization to Enhance Effectiveness,” and (5) “What to Confirm Prior to Discharge.” The tool was evaluated in 4 focus groups of 18 health care professionals, 90% of whom reported the tool was easy to use, was concise, and would guide a health care professional who is new to the acute care setting and working with patients with AECOPD. Limitations The tool was developed based on published evidence and expert opinion, so the applicability of the items to patients in all settings cannot be guaranteed. The Delphi panel consisted of health care professionals from Canada, so items may not be generalizable to other jurisdictions. Conclusions The AECOPD-Mob provides practical and concise information on safe and effective exercise for the AECOPD population for use by the new graduate or novice acute care practitioner.

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