The design and development of an experience measure for a peer community moderated forum in a digital mental health service.

Online digital mental health communities can contribute to users' mental health positively and negatively. Yet the measurement of experience, outcomes and impact mechanisms relating to digital mental health communities is difficult to capture. In this paper we demonstrate the development of an online experience measure for a specific children and young people's community forum inside a digital mental health service. The development of the Peer Online Community Experience Measure (POCEM) is informed by a multi-phased design: (i) item reduction through Estimate-Talk-Estimate modified Delphi methods, (ii) user testing with think-aloud protocols and (iii) a pilot study within the digital service community to explore observational data within the platform. Experts in the field were consulted to help reduce the items in the pool and to check their theoretical coherence. User testing workshops helped to inform the usability appearance, wording, and purpose of the measure. Finally, the pilot results highlight completion rates, differences in scores for age and roles and "relate to others", as the most frequent domain mechanism of support for this community. Outcomes frequently selected show the importance of certain aspects of the community, such as safety, connection, and non-judgment previously highlighted in the literature. Experience measures like this one could be used as indicators of active therapeutic engagement within the forum community and its content but further research is required to ascertain its acceptability and validity. Multi-phased approaches involving stakeholders and user-centred design activities enhances the development of digitally enabled measurement tools

Table 1_v1_The design and development of an experience measure for a peer community moderated forum in a digital mental health service.docx

Online digital mental health communities can contribute to users' mental health positively and negatively. Yet the measurement of experience, outcomes and impact mechanisms relating to digital mental health communities is difficult to capture. In this paper we demonstrate the development of an online experience measure for a specific children and young people's community forum inside a digital mental health service. The development of the Peer Online Community Experience Measure (POCEM) is informed by a multi-phased design: (i) item reduction through Estimate-Talk-Estimate modified Delphi methods, (ii) user testing with think-aloud protocols and (iii) a pilot study within the digital service community to explore observational data within the platform. Experts in the field were consulted to help reduce the items in the pool and to check their theoretical coherence. User testing workshops helped to inform the usability appearance, wording, and purpose of the measure. Finally, the pilot results highlight completion rates, differences in scores for age and roles and “relate to others”, as the most frequent domain mechanism of support for this community. Outcomes frequently selected show the importance of certain aspects of the community, such as safety, connection, and non-judgment previously highlighted in the literature. Experience measures like this one could be used as indicators of active therapeutic engagement within the forum community and its content but further research is required to ascertain its acceptability and validity. Multi-phased approaches involving stakeholders and user-centred design activities enhances the development of digitally enabled measurement tools.</p

Table 2_v1_The design and development of an experience measure for a peer community moderated forum in a digital mental health service.docx

Online digital mental health communities can contribute to users' mental health positively and negatively. Yet the measurement of experience, outcomes and impact mechanisms relating to digital mental health communities is difficult to capture. In this paper we demonstrate the development of an online experience measure for a specific children and young people's community forum inside a digital mental health service. The development of the Peer Online Community Experience Measure (POCEM) is informed by a multi-phased design: (i) item reduction through Estimate-Talk-Estimate modified Delphi methods, (ii) user testing with think-aloud protocols and (iii) a pilot study within the digital service community to explore observational data within the platform. Experts in the field were consulted to help reduce the items in the pool and to check their theoretical coherence. User testing workshops helped to inform the usability appearance, wording, and purpose of the measure. Finally, the pilot results highlight completion rates, differences in scores for age and roles and “relate to others”, as the most frequent domain mechanism of support for this community. Outcomes frequently selected show the importance of certain aspects of the community, such as safety, connection, and non-judgment previously highlighted in the literature. Experience measures like this one could be used as indicators of active therapeutic engagement within the forum community and its content but further research is required to ascertain its acceptability and validity. Multi-phased approaches involving stakeholders and user-centred design activities enhances the development of digitally enabled measurement tools.</p

HPTN 083-02: factors influencing adherence to injectable PrEP and retention in an injectable PrEP study

INTRODUCTION: HPTN 083 demonstrated the superiority of long-acting cabotegravir (CAB-LA) versus daily oral emtricitabine/tenofovir disoproxil fumarate (TDF/FTC) as pre-exposure prophylaxis (PrEP) among cisgender men and transgender women who have sex with men (MSM/TGW). HPTN 083 provided the first opportunity to understand experiences with injectable PrEP in a clinical trial. METHODS: Participants from two US sites (Chicago, IL and Atlanta, GA) and one international site (Rio de Janeiro, Brazil) were purposively sampled for individual qualitative interviews (N = 40), between November 2019 and March 2020, to explore trial experiences, barriers to adherence and other factors that may have impacted study implementation or outcomes. The blinded phase ended early due to efficacy; this analysis includes interviews conducted prior to unblinding with three groups defined by adherence (i.e. injection visit attendance): adherent (n = 27), non-adherent (n = 12) and early discontinuers (n = 1). Data were organized using NVivo software and analysed using content analysis. RESULTS: Participants (mean age: 27) were primarily cisgender MSM (90%) and Black/African American (60%). Reasons for trial enrolment and PrEP use included a preference for using HIV prevention medication versus treatment in the event of HIV acquisition; the ability to enhance health via study-related education and services; access to a novel, convenient HIV prevention product at no cost; and contributing to MSM/TGW communities through research. Participants contrasted positive experiences with study staff with their routine clinical care, and emphasized increased scheduling flexibility, thorough communication, non-judgemental counselling and open, affirming environments (e.g. compassion, less stigma) as adherence facilitators. Injection experiences were positive overall; some described early injection-related anxiety, which abated with time and when given some measure of control (e.g. pre-injection countdown), and minimal injection site discomfort. Some concerns and misperceptions about injectable PrEP were reported. Barriers to adherence, across all adherence categories, included structural factors (e.g. financial constraints, travel) and competing demands (e.g. work schedules). CONCLUSIONS: Respondents viewed injectable PrEP trial participation as a positive experience and a means of enhancing wellbeing. Study site flexibility and affirming clinic environments, inclusive of non-judgemental counselling, were key facilitators of adherence. To support injection persistence, interventions that address structural barriers and promote flexible means of injection delivery may be most effective

HPTN 083-02: factors influencing adherence to injectable PrEP and retention in an injectable PrEP study.

INTRODUCTION: HPTN 083 demonstrated the superiority of long-acting cabotegravir (CAB-LA) versus daily oral emtricitabine/tenofovir disoproxil fumarate (TDF/FTC) as pre-exposure prophylaxis (PrEP) among cisgender men and transgender women who have sex with men (MSM/TGW). HPTN 083 provided the first opportunity to understand experiences with injectable PrEP in a clinical trial. METHODS: Participants from two US sites (Chicago, IL and Atlanta, GA) and one international site (Rio de Janeiro, Brazil) were purposively sampled for individual qualitative interviews (N = 40), between November 2019 and March 2020, to explore trial experiences, barriers to adherence and other factors that may have impacted study implementation or outcomes. The blinded phase ended early due to efficacy; this analysis includes interviews conducted prior to unblinding with three groups defined by adherence (i.e. injection visit attendance): adherent (n = 27), non-adherent (n = 12) and early discontinuers (n = 1). Data were organized using NVivo software and analysed using content analysis. RESULTS: Participants (mean age: 27) were primarily cisgender MSM (90%) and Black/African American (60%). Reasons for trial enrolment and PrEP use included a preference for using HIV prevention medication versus treatment in the event of HIV acquisition; the ability to enhance health via study-related education and services; access to a novel, convenient HIV prevention product at no cost; and contributing to MSM/TGW communities through research. Participants contrasted positive experiences with study staff with their routine clinical care, and emphasized increased scheduling flexibility, thorough communication, non-judgemental counselling and open, affirming environments (e.g. compassion, less stigma) as adherence facilitators. Injection experiences were positive overall; some described early injection-related anxiety, which abated with time and when given some measure of control (e.g. pre-injection countdown), and minimal injection site discomfort. Some concerns and misperceptions about injectable PrEP were reported. Barriers to adherence, across all adherence categories, included structural factors (e.g. financial constraints, travel) and competing demands (e.g. work schedules). CONCLUSIONS: Respondents viewed injectable PrEP trial participation as a positive experience and a means of enhancing wellbeing. Study site flexibility and affirming clinic environments, inclusive of non-judgemental counselling, were key facilitators of adherence. To support injection persistence, interventions that address structural barriers and promote flexible means of injection delivery may be most effective

HPTN 083-02: factors influencing adherence to injectable PrEP and retention in an injectable PrEP study

HPTN 083 demonstrated the superiority of long-acting cabotegravir (CAB-LA) versus daily oral emtricitabine/tenofovir disoproxil fumarate (TDF/FTC) as pre-exposure prophylaxis (PrEP) among cisgender men and transgender women who have sex with men (MSM/TGW). HPTN 083 provided the first opportunity to understand experiences with injectable PrEP in a clinical trial. Participants from two US sites (Chicago, IL and Atlanta, GA) and one international site (Rio de Janeiro, Brazil) were purposively sampled for individual qualitative interviews (N = 40), between November 2019 and March 2020, to explore trial experiences, barriers to adherence and other factors that may have impacted study implementation or outcomes. The blinded phase ended early due to efficacy; this analysis includes interviews conducted prior to unblinding with three groups defined by adherence (i.e. injection visit attendance): adherent (n = 27), non-adherent (n = 12) and early discontinuers (n = 1). Data were organized using NVivo software and analysed using content analysis. Participants (mean age: 27) were primarily cisgender MSM (90%) and Black/African American (60%). Reasons for trial enrolment and PrEP use included a preference for using HIV prevention medication versus treatment in the event of HIV acquisition; the ability to enhance health via study-related education and services; access to a novel, convenient HIV prevention product at no cost; and contributing to MSM/TGW communities through research. Participants contrasted positive experiences with study staff with their routine clinical care, and emphasized increased scheduling flexibility, thorough communication, non-judgemental counselling and open, affirming environments (e.g. compassion, less stigma) as adherence facilitators. Injection experiences were positive overall; some described early injection-related anxiety, which abated with time and when given some measure of control (e.g. pre-injection countdown), and minimal injection site discomfort. Some concerns and misperceptions about injectable PrEP were reported. Barriers to adherence, across all adherence categories, included structural factors (e.g. financial constraints, travel) and competing demands (e.g. work schedules). Respondents viewed injectable PrEP trial participation as a positive experience and a means of enhancing wellbeing. Study site flexibility and affirming clinic environments, inclusive of non-judgemental counselling, were key facilitators of adherence. To support injection persistence, interventions that address structural barriers and promote flexible means of injection delivery may be most effective