Development and Validation of a Psoriasis Treatment Acceptability Measure through Group Concept Mapping

Background: Psoriasis is a common autoimmune dermatologic condition which has a pronounced negative impact on patient quality of life and disease burden. Currently, there are a number of treatments available for psoriasis, with differences in efficacy, mechanism of action, mode of administration, adverse effects, and tolerability. However, a reliable, validated patient-reported instrument to address patient expectations and of psoriasis treatment has not been developed. This project was undertaken with the aim of developing a fit-for-purpose self-reported instrument to inform patient expectations and preferences of psoriasis treatments.Methods: Two studies, both utilizing qualitative and quantitative methods, were conducted in patients within the entire spectrum of psoriasis severity. In Study 1, a group concept mapping (GCM) exercise was conducted with dermatologists and moderate-to-severe psoriasis patients to identify concepts important in the treatment of psoriasis. In Study 2, a preliminary Treatment Acceptability Questionnaire (TAQ) was developed using GCM-derived concepts from Studies 1 and 2, followed by cognitive debriefing (CD) telephone interviews of the preliminary TAQ. In Study 2, another GCM exercise was conducted with mild and newly diagnosed psoriasis patients. Psychometric analyses were performed on the TAQ to evaluate validity and reliability.Results: The Study 1 GCM exercise generated 43 concepts from moderate-to-severe psoriasis patients (n=20) and dermatologists (n=10). In Study 2, 37 GCM concepts were generated from mild and newly diagnosed psoriasis patients (n=20). From the 2 GCM exercises, 28 concepts were selected to form the preliminary TAQ; CD interviews indicated strong understanding and relevance of TAQ items among patients with disease ranging from mild to severe. The final TAQ consisted of 20 items; psychometric analysis demonstrated strong validity and reliability of the TAQ. Conclusions: The TAQ is a novel psychometrically validated fit-for-purpose patient-reported instrument to inform healthcare providers of patients’ expectations of and preferences for treatment of their psoriasis and can help in shared decision making between patients and physicians.

If They Only Disrespect Us a Little, and the Story is Interesting, I Keep Watching: Navigation of Ethnic Media Gratifications by Latino Teens

The goal of this study was to apply insights from social identity gratifications and ethnic/racial identity development frameworks to better understand how adolescents perceive, select, and avoid media content which has the potential to damage self-and group-concept. We conducted focus groups with 32 Latino adolescents aged 13 to 15. We found mixed evidence that youth prioritized the ethnicity of characters in program selection. Most referenced personality or age as the primary identity-based factors of interest. Although students widely recognized negative stereotypes of Latinos in mainstream English-language media, this did not overwhelmingly dictate media choices, seemingly due to lack of alternative choices. In contrast, Spanish language programming offered a positive alternative to English-language media and may serve identity needs. The theoretical and practical implications are discussed.

Conceptualizing Vulnerability for Health Effects of the COVID-19 Pandemic and the Associated Measures in Utrecht and Zeist: A Concept Map

The COVID-19 pandemic and the associated measures have impacted the health of many. Not all population groups are equally vulnerable to such health effects, possibly increasing health inequalities. We performed a group concept mapping procedure to define a common, context-specific understanding of what makes people vulnerable to health effects of the pandemic and the measures. We organized a two-step, blended brainstorming session with locally involved community members, using the brainstorm focus prompt ‘What I think makes people vulnerable for the COVID-19 pandemic and the measures is…’. We asked participants to generate as many statements as possible. Participants then individually structured (sorted and ranked) these statements. The structuring data was analysed using the groupwisdomTM software and then interpreted by the researchers to generate the concept map. Ninety-eight statements were generated by 19 participants. Sixteen participants completed both structuring tasks. The final concept map consisted of 12 clusters of vulnerability factors, indicating a broad conceptualization of vulnerability during the pandemic. It is being used as a basis for future research and local supportive interventions. Concept mapping is an effective method to arrive at a vulnerability assessment in a community in a short time and, moreover, a method that promotes community engagement.

Groups and Social Boundaries

Social groups were a key concept in early sociology (German formal sociology, symbolic interactionism). Since the 1960s, they have been replaced by “social network” as the prime concept for informal social structures. We rarely find the bounded and internally homogeneous social units suggested by the group concept in the real world. Instead, individuals are embedded in a complex mesh of social relationships. Building on relational sociology, we can reconceptualize groups as a particular case of densely connected network patterns of social relationships. These exist only by degree, to the extent that they are reinforced by a social boundary separating the group members symbolically from the outside world and by foci of activity for the group to meet. Densely connected groups develop a particular group culture, and they frequently use symbols to signal group membership and the cultural difference to other groups and to the wider cultural context (group style).

Identifying Occupational Therapy Research Priorities in Trinidad and Tobago: A Group Concept Mapping Study

In Trinidad and Tobago, occupational therapy is an emerging profession with limitations in the number of practitioners and the scope of practice. With the development of a new Master of Science Occupational Therapy programme in the country, the profession is continuously growing. There has been an increased demand for culturally relevant research to build the occupational therapy evidence base locally. However, the narrow range of occupational therapy literature in the country makes it difficult to highlight research gaps and decipher what research areas should be prioritised to best impact occupational therapy practice at present. This group concept mapping study is aimed at identifying priority areas for occupational therapy research in Trinidad and Tobago from the perspectives of occupational therapy students and practitioners. Participants brainstormed and contributed specific research ideas they would like to see developed in the country. Individually, participants sorted these ideas into themes and rated each idea based on perceived importance and feasibility. Using the GroupWisdom™ software, multidimensional scaling and hierarchical cluster analyses were applied to the sort data to create idea clusters within a concept map. Rating values were analysed to determine priority research themes within the concept map. The resulting concept map illustrated seven research priorities: Contextualising Practitioner Development, The Realities of Emerging OT Practice, Localising Mental Health OT, Occupation and Participation of Children and Youth, School-based OT in the Local Context, OT with Special Populations, and OT Contributions to the Public Health Sector. These findings represent the research needs of the occupational therapy profession in Trinidad and Tobago and will help to focus future researchers’ efforts to expand the local evidence base.

Using group concept mapping software to develop a conceptual framework of left ventricular assist device recipients' experiences

Background Advanced Heart failure (AHF) carries a high mortality rate. Heart transplantation is one therapeutic option, but low donation rates limits its availability. A left ventricular assist device (LVAD) is an alternative therapy which helps relieve symptoms, while improving prognosis and quality of life. However, lack of donors also means that the LVAD becomes a destination therapy by default.(1) Living with an LVAD requires significant psychological, social and physical adaptation for the recipients' and their families.(2) Patient reported outcome measures (PROMs) are one way of capturing these concerns and ongoing problems. Discussions with a patient and public involvement group found a range of issues not currently captured by available PROMS. Aim To develop a conceptual framework which reflects the experiences of LVAD recipients' and evaluate their importance for inclusion in PROMs using a research web platform. Method Participants were recruited from a regional transplant centre which covers a wide geographical area in the UK. Ethical approval was obtained and participants were recruited through routine LVAD clinics. Group concept mapping (GCM) is a semi-quantitative mixed methods approach that can be used to capture and quantify recipients' experiences.(3) Groupwisdom concept mapping software was used as the electronic data collection platform.(4) GCM consists of 3 stages: statement generation, thematic statement sorting, and rating statements for importance, relevance and frequency of impact. Multidimensional scaling and hierarchical cluster analysis produces visual representations of recipients' experiences as a points and cluster map, and scoring of statements produces relative importance of items across the clusters. Results 18 LVAD recipients consented to take part. 101 items and 9 clusters were generated. Clusters represented: Activities; Partner/family dependency; Travel; Mental well-being; LVAD challenges; Equipment and clothing; Physical and cognitive limitations; Restrictions, and LVAD positives. LVAD Positives and LVAD restrictions were rated high for frequency, relevance and importance. Physical and cognitive limitations was rated high for importance and frequency. Equipment was rated high for relevance and frequency, and Challenges was rated high for relevance. Conclusion GCM and the online software is a useful tool for developing a conceptual framework and mapping key areas of importance for LVAD recipients, especially, when prioritising important patient reported outcome domains for use in clinical practice, future research and design evolution. Using an electronic platform allowed us to reach participants dispersed over a wide geographical area. FUNDunding Acknowledgement Type of funding sources: Other. Main funding source(s): British Heart FoundationNational Institute for Health Research Cluster Rating Map for Importance

503 - Informal antidepressant strategies in nursing homes: Two Group Concept Mapping studies among residents, their relatives, and professional caregivers

Background:Although formal treatments like antidepressants and psychotherapy may effectively reduce depression in nursing home residents, side effects and poor treatment adherence are common. To improve depression care, it is important to also learn from informal strategies already used successfully in daily practice, alongside or in absence of formal treatment. For example, although not prescribed as formal treatment, a care provider may seat a resident with depression at a table near the window. This may have antidepressant effects due to extra day light or pleasant views from the window.Objectives:To identify, categorize, and prioritize informal antidepressant strategies for residents already used in daily practice as reported by residents themselves, their relatives, and professional caregivers.Method:In the first Group Concept Mapping study, residents, relatives, and professional caregivers (N = 124) brainstormed on strategies to prevent or improve depression that may be performed by residents themselves. In the second study, the same participants (N = 110) reported on strategies others involved in residents’ lives could perform. In a second round of both studies, participants rated the expected effectiveness (N = 54, N = 51 respectively) and feasibility (N = 50 for both studies) of the strategies mentioned. In addition, strategies for both studies were sorted based on similarity in meaning by experts.Results:Six clusters appeared for actions to be undertaken by residents themselves, and five clusters for actions by others. The results showed that, for strategies by residents, the clusters ‘Being socially connected’ and ‘Participating in activities’, and for strategies by others, the cluster ‘Offering personal attention’ stand out the most in terms of high expected effectiveness. The cluster with strategies executed by residents that stood out as the most feasible was ‘Having a healthy living environment’. The most feasible clusters performed by others were ‘Offering personal attention’, ‘Using positive treatment/approach’, and ‘Using or adapting the physical environment’.Conclusion:By using an innovative bottom-up participatory approach, this research shed light on various clusters of useful informal antidepressant strategies for daily practice. To test effectiveness and implementation, research is needed on these antidepressant strategies and their regular use in care.

Fostering Change Through Occupation-Based Intervention: An International Joint Group Concept Mapping Study

Further consolidation and clarity regarding occupation as a means to foster change in interventions are needed. The study aimed to utilize the knowledge of occupational scholars to systematically determine what is required to use occupation as means to foster change within occupation-based interventions and to generate a conceptual model from those results. Group Concept Mapping involved the following: preparation, generation of ideas, structuring of statements, data analysis, interpretation of maps, and development of conceptual model. Fifty-two international occupational scholars brainstormed 125 ideas. A cluster rating map with nine clusters posed the foundation for a conceptual model with seven themes, namely, artful use of occupation, evidence-based use of occupation, collaboration to promote occupation, coordinating intervention fit, client factors, sociocultural context, and structural influences. The conceptual model, capturing dimensions and dynamics required for using occupation to foster change, may guide future research into occupation-based interventions.

Involvement of professionals in research: knowledge integration, development of practice, and challenges: a group concept mapping study

Background Research and practice are often considered as two different worlds with different values, which causes a gap between them. Involving professionals such as practitioners, managers, decision-makers, and policy-makers in research on ageing and health might address the gap between research and practice, strengthen the healthcare system, and increase older people’s possibilities for healthy ageing. The aim of this study was to conceptualize professionals’ involvement in research on ageing and health from the perspective of the professionals themselves. Methods A mixed method called group concept mapping was used. Professionals with experience being involved in research on ageing and health participated in qualitative data collection through brainstorming sessions (n = 29) and by sorting statements (n = 29). Afterwards, they participated in a quantitative data collection by rating statements according to how much each statement strengthened practice (n = 30) and strengthened research (n = 28). Multidimensional scaling analysis and hierarchical cluster analysis were used to conduct quantitative analysis. Latent qualitative analysis was also conducted. Results Analysis resulted in eight clusters which illustrated conceptual areas of professionals’ involvement in research projects. The qualitative latent construct of the cluster map resulted in the themes: challenges for professionals; prerequisites and professionals’ learning can contribute to development of practice; and integrated knowledge benefits older people. There was a strong correlation between what strengthens practice and research (r = 0.92). Conclusions This study illustrates conceptual areas of professionals’ own perspectives on what their involvement in research can lead to. Their involvement may lead to knowledge being integrated, and the professionals may learn through their involvement, which can contribute to the development of practice. However, there can also be challenges that need to be handled when professionals are involved in research. The study can be useful for improving the understanding of and actual involvement of professionals in research, and for optimizing the involvement of professionals.