In the United States, a disproportionate number of unintended pregnancies occur among African Americans, particularly those in their later teenage years and early 20s. Mobile technology is becoming more ubiquitous as a method for health promotion; however, relatively little research has been done with this population to determine their perspectives about unintended pregnancy, the potential of successfully using mobile technology to prevent unintended pregnancy, and the content of such programs.The purpose of this study was to obtain the perspectives of African American emerging adults about unintended pregnancy and the use of mobile technology to reduce unintended pregnancy rates.Focus groups and interviews were conducted with 83 African Americans, aged 18-21 years. Data were analyzed using an open coding process. Emergent codes were then added as needed, and themes and subthemes were identified.Participants cited the social environment and lack of education as primary reasons for disproportionate rates of unintended pregnancy. They noted that unintended pregnancy is an important issue and that they desire more sexual health information. They enthusiastically supported mobile technology as a means to communicate unintended pregnancy prevention programming and offered many suggestions for program content, look, and feel.Young and emerging adult African Americans want and need sexual health resources, and a mobile-based platform could be widely accepted and address needs to lower disproportionate rates of unintended pregnancy. An essential next step is to use these findings to inform the development of a mobile-based unintended pregnancy prevention and sexual health program prototype to determine feasibility. In the United States, unintended pregnancy is common. In 2011, the rate of unintended pregnancies was 45% ,4. AmongUnintended pregnancy, particularly among youth, can have health consequences for the mother and child, educational consequences such as reduced probability of obtaining a college degree, and economic consequences such as reduced lifetime earnings and taxpayer burden . Other sWhen examining rates by region of the United States, racial disparities in unintended pregnancy rates are even more pronounced in the South. In particular, young adult African American women have some of the highest rates of unintended pregnancy in South Carolina . South CYoung African Americans are just as likely to use the internet as young whites, and nearly all African Americans between the ages of 18 and 29 years have been found to use at least one social media app . With thThis study used focus group and interview methodology to determine perspectives on using mobile technology to reduce unintended pregnancy among young adult African Americans. Study participants consisted of African American young adults, aged 18-21 years. Additionally, efforts were made to recruit both parenting (those who were pregnant or had a child) and nonparenting young adults (those who were not pregnant and never had a child). Recruitment flyers were developed that incorporated images representative of the intended audience , a description of the study purpose, eligibility criteria, and staff contact information including a land line phone number, text-enabled phone number, and email address. Purposive sampling was employed whereby participants were recruited using a variety of methods, maximizing the locations where potential study participants were likely to be found. For example, flyers were posted in high-traffic areas for African American young adults and circulated among networks such as college professors and college student organizations , health educators, community groups, churches, public libraries, family planning clinics, social media websites (Facebook and twitter), and word of mouth. Community events where intended audience members congregate, such as sports tournaments and a local step show, were also venues for recruitment. Potential participants were screened for eligibility and asked their availability to attend a 90-minute focus group. We also employed the strategy of tentatively scheduling focus group meetings as we found that several potential participants were more amenable to having a scheduled “appointment” rather than having to be contacted later to determine their ability to attend a group on some future date. Additionally, spontaneous interviews were conducted in the event that the recruiter and eligible participant had availability at the time of the initial meeting. Eligibility criteria for the participants were: African American race, age 18-21 years, ability to attend a 90-minute focus group meeting, and English as the primary language. Potential participants were sent study reminders  at least 1 week, 3 days, and the day prior to, as well as the day of, the scheduled focus groups to help facilitate their attendance. Participants were enrolled January 2016 through June 2016. All study procedures were reviewed and approved by the University of South Carolina institutional review board.A brief, self-administered, demographic and sexual health questionnaire was developed by the lead researcher to obtain a profile of the study participants. Demographic measures included age, sex, race, ethnicity, marital status, educational level, employment status, and sexual orientation. Sexual health information included a range of questions to help describe participants’ sexual background as well as sexual health history. For example, questions were included about age of sexual debut, whether or not participants had children, as well as when or if they ever received formal sexual health instruction, the content of that instruction, and their perception of where most African American youth receive sexual health and teen pregnancy prevention information.A focus group guide was developed to standardize the conduct of focus group sessions. Open-ended questions were developed by the first author based on the research aims of the study. The questions were guided by a review of extant literature in unintended pregnancy prevention, sexual health promotion, and mobile technology. Based on this, the focus group questions were organized into 4 categories: importance of teen pregnancy prevention, technology as a method to promote teen pregnancy prevention, content of a technology-based program to promote teen pregnancy prevention, and design and format of a technology-based program to promote teen pregnancy prevention. The lead author is a public health researcher and professor who has had over 20 years’ experience in the development, implementation, and analysis of focus groups and qualitative instruments. Focus group questions were pretested with members of the intended audience to ensure content validity. Based on the feedback received during the pretest, the focus group questions were refined and finalized.Participants were invited to attend a focus group to share their thoughts about how young adult African Americans use mobile technology for sexual health information. The researcher and a research assistant obtained training about policies for the protection of human subjects in research, and at least one of the staff members was available at each focus group meeting to obtain informed consent. Additionally, the researcher trained the research assistant in best practices for conducting and moderating successful focus groups including information about note taking, encouraging participation, and navigating roadblocks. Participants were asked to review a copy of the informed consent document as a staff member reviewed it with them. Participants were encouraged to ask questions during and after the document review, were then asked to sign the consent form indicating their approval, and were given a copy of the consent document for their records. Once participants were enrolled into the study, they were asked to complete an anonymous self-administered paper-and-pencil survey. In order to limit feelings of anxiety regarding responses to sensitive questions, after the staff member provided participants their surveys, participants completed them, were asked not to attach their name to the survey, and were then asked to place the completed survey in a sealed envelope that would not be opened until the end of the recruitment day. All participants received a US $15 cash incentive for their participation. Focus groups were scheduled for days and times that were convenient to study participants and ranged from mid-day to late evening, any day of the week. In the event that the staff member and eligible participant had availability at the time of the initial meeting, spontaneous interviews were conducted. Meetings or interviews were conducted by a member of the research team who had been trained to moderate focus group discussions and conduct interviews.Focus group meetings were digitally audio-recorded. Audio recordings were reviewed and analyzed using the memoing technique , which fA total of 83 young adults participated in the study, and 13 focus groups and 7 interviews were conducted. Participants ranged in age from 18 to 21 years (mean age 19.5 years) and were primarily African American  and of non-Hispanic ethnicity . One participant identified as multiracial. Of the participants, 98% (81/83) reported never being married, and 52% (43/83) had some high school education or had earned at least a high school diploma. Of the participants, 93% (77/83) identified as heterosexual, with 7% (6/83) identifying as gay, lesbian, or bisexual.Regarding sexual behaviors, 83% (69/83) of participants had ever had consensual sex, with 16 years as the average age of first sexual experience. Among those who were sexually experienced, 15% (11/83) had ever been or ever gotten someone pregnant. As it relates to formal sex education, the majority of participants  had received some form of sex education before age 18, with 75% (62/83) having their first instruction before entering high school. As part of their sex education, participants identified having learned about abstinence until marriage, birth control, condoms, and sexually transmitted infections (STIs), with the overwhelming majority having received information about condoms  and STIs . When asked about where they think most African American youth receive information about teen pregnancy prevention, over half of the sample identified family members  and school  as the most popular sources. The next most popular sources of information were friends and social media at 45% (37/83) and 41% (34/83) of participants, respectively. The sources identified least often were music , flyers/pamphlets , movies , newspapers/magazines , and church . When asked about whether they think that African American youth receive enough accurate information about teen pregnancy prevention, most participants  responded “no” or “not sure” see .Participants did not seem to be surprised that, while rates of unintended pregnancy among youth and young adults have declined as a whole, we continue to see rates high among African Americans, particularly those aged 18-19 years. A variety of reasons for this statistic were proffered, with many of them centered around 2 notions: the social environment and lack of education.As one participant stated, “I would think their social environment [is the reason why the rates are high among African Americans]. It depends who they are influenced by either at home or out in the community or even just what they see out in the community. They just think that it’s fine and it’s cool. They never talk about the right way to have sex…they only see about the wrong ways.” Another participant explicitly identified messages in music as a culprit. He stated that the messages in music promote “that type of behavior,” presumably unprotected sex. Other participants described the environs that are changing for that age group in that many may be going from high school to the “freedom” of college and the feeling that they are adults and can make decisions such as having sex without concern for parents’ judgment or oversight. As one participant noted, “18-19 is that transitional period, and when you come to college, you can do whatever you want to do.”In addition to one’s environment as a causal factor, several participants suggested that the reason for the disproportionate rates was lack of education. As one participant stated, “Nobody is teaching about it, and there is little guidance. What little you do learn from school, you don’t always take it to heart, and teachers don’t answer all the questions, and you’re not comfortable talking to parents, so…” As stated by another participant, “There is definitely a lack of education about sex and preventing pregnancy,” so she was not surprised by the statistic.Overwhelmingly, participants noted that teen pregnancy is an important issue. Discussions about why it is important centered around the idea that young people should try to preserve their youth and with a child comes responsibilities that are vastly different and adult-like. According to one parenting participant, “Because now that I have a child, it is not easy, I wouldn't want anyone else who is not ready or prepared…I know I wasn’t…I had to rush and get prepared…and like in high school, you got school work, and if you have a job and all that…it’s a lot to deal with.” Another participant stated, “They haven't had time to develop yet, and they're still learning about themselves.” Other comments included, “you haven’t started your life so how can you start another life?” “you’re still a child,” teens should “wait until they are situated,” and “babies shouldn’t raise babies.”There was a variety of responses to the question about what participants did not learn about pregnancy prevention when they were in school, and in fact, responses more broadly reflected what they did not learn about sexual health in general. As it relates to pregnancy prevention, one parenting female participant noted that she did not learn about how hard it would be, and as she stated, “what all I had to go through.” Others noted that they did not learn about how to put on a condom, abstinence, birth control, and the withdrawal method. More contextual responses were about practical things and less about clinical outcomes or biological processes. For example, one participant stated, “I wish that when I learned about pregnancy prevention and sex ed and stuff, they woulda told me that masturbation is okay. I mostly do it now to keep myself out the bull*$#!” indicating the need to learn about alternatives to seek pleasure. Another participant stated, “What they didn’t say was while you’re learning, your mindset will be totally different [than] when you’re in that position, like when you’re in that moment, your mind is not there”. Responses that are applicable to what was not learned about sexual health in general included the consequences of having multiple sex partners, the high level of peer pressure in high school to engage in sexual activities, STIs, and sexual orientation .Participants identified several formats for a pregnancy prevention program that reflected their preferred type of interaction and platform of interaction. Some participants preferred individual interaction while others preferred a group setting for interaction. Those preferring an individual format described the benefits of confidentiality and privacy. For example, one participant stated, “I would like an individual format so you can be more comfortable and have no judgment from others.” For those who preferred a group format, reasons for this included modeling behavior and ability to glean from others’ experience. One participant noted, “In a group, if your friends think that preventing pregnancy is cool, then you’re gonna think it is too.” Another participant stated, “If you have the group discussion, then it’s like, if you have the right people in there, it’s like the influence of it is just going to change their mind…” Yet another participant commented that they would prefer a group so that you “could hear other peoples’ stories.” In instances where the initial responses of a group were divergent, at the end of the discussion, each perspective could see the benefits of the other (even if they still preferred their own).Regarding the use of mobile technology as a format, the majority of participants liked the idea of having a mobile platform to provide pregnancy prevention information. Reasons for this included “everyone is on their cell phone,” “youth spend a lot of time on their social media,” “I’m mostly on my phone…but not on a computer,” and an app “would be good so you can express yourself privately…and I’m on my phone all the time.” When further prompted about specific aspects of a mobile program, participants noted that it should be brief, interactive, have little text, be entertaining, and allow for access across multiple sittings (rather than needing to be completed at one point in time).When asked about the topics that should be included in a mobile technology program for pregnancy prevention among African American youth, participants offered a wide variety of responses. Similar to responses about what they didn’t learn about pregnancy prevention, participants tended to respond about interest in information about sexual health content in general. Frequently suggested topics included condom use and birth control. Additional interests included information about relationship dynamics whereby participants mentioned consent, modeling ways to say “no,” how to communicate with partners about birth control, and how to handle abuse. Several participants indicated wanting to know about sexual orientation and LGBTQ issues with several groups openly debating about whether pregnancy prevention would be applicable to sexual minorities. When prompted, participants also noted that substance use would be a topic of interest, particularly as it relates to its influence on decision making.Study participants had very insightful ideas about program messages. Some suggested that engaging in safer sex, having planned birth control, and waiting  should be clear messages. Others took a more inspired route providing suggestions such as “It goes down in the D.M.” , “Open books, not legs,” “Be yourself,” “A real man knows that she’s worth the wait,” and “Use the strap if you don’t want the clap.” Conversely, participants also offered suggestions for what not to include such as abstinence messages, information about the pull-out method, and the message, “don’t have sex.”When asked about whether men and women should receive the same program content, responses were mixed. Some participants stated that the same information should be given to both men and women. One participant’s rationale was that, in fact, men should have information that is pertinent to women so that men can know how to “help her out or make her feel better.” According to another participant, “the consequences are the same for both genders so, yeah, they should get the same information.” Participants who suggested that men and women receive different information highlighted interesting perspectives on gender dynamics and gender roles. For instance, one male participant stated, men should know “never have unprotected sex even if she says she’s on the pill,” and another male participant stated that, “men should know how to think with the head on their shoulders.” According to one female participant, men should know “your body count doesn’t make you a man.” Another suggestion from a female participant was, “if you’re serious about a partner, get tested together.”Participants provided different messages about whether parenting and nonparenting youth should receive the same program content. For those who thought parenting and nonparenting persons should receive the same information, many reflected on the fact that even though someone may have had a child already, they still may want to and need to know information about how to prevent a subsequent unintended pregnancy. As one participant stated, “I feel like, well the people who do already have kids and everything, it be some stuff they don't know that they didn't get or receive so they should all get the same information.” For those whose perspective was that different information should be provided, they pointed out that parenting teens could serve as models and tell others “what it’s about and how it is.”Participants provided their ideas about the optimal design for a mobile technology program for pregnancy prevention for African American older adolescents. Participants provided feedback about colors , images , music , and videos . Some suggested alternatively making the look of the program an interactive feature whereby users could tailor it to their own style.Participants also described different features that could enhance participation or interest. Suggestions included offering some type of incentive to download the program, connecting it to social media , integrating endorsements , and making it fun and attractive.Based on national trends, unintended pregnancy is on the decline , which cCommonly, respondents found it difficult to divorce unintended pregnancy prevention from overall sexual health. Many suggestions that respondents provided about topics and messages of interest reflected conventional prevention content such as promoting condom and contraception use . AdditioThe idea of using mobile technology to promote unintended pregnancy prevention and sexual health was widely supported. None of the participants suggested that such a platform would not work and in fact enthusiastically provided suggestions ranging from key features, interface look and feel, and compatibility with existing social media platforms. Other researchers have reported about the vast opportunity that mobile apps have for reaching youth and young adults with sexual health education content ,27-32; hA significant finding that we want to highlight is the fact that study participants were not surprised by the fact that African American young adults outpace all others in unintended pregnancy rates and that this racial health disparity continues to persist. Either because this is a part of their reality or because they are accustomed to experiencing health outcomes different from majority populations, the researchers found this slightly concerning. Some respondents commented that there does not need to be different (read: tailored) programs because “we all experience these public health challenges”; however, a majority of respondents noted that it would be great to have programs and systems that they felt were “for them.” Future research could do well to explore this notion further.Our study is subject to several limitations. One limitation is the sampling technique used for the study. We used purposive sampling to obtain our study sample. In some regards, while this approach was successful in garnering eligible study participants, it could introduce bias and limit generalizability of study findings. Another limitation is the terminology used to discuss the focus of the project. Many of the study documents included the term “teen pregnancy”; however, due to the age range of the study population exceeding the teen years we also used the term “unintended pregnancy.” The vast majority of teen births are among women aged 18-19 years, and rates of unplanned pregnancy are highest among those in their late teens and early 20s ,4. WhileStrengths of the study should also be noted. Our ability to recruit a community sample of more than 80 18–21-year-old African American participants to conduct qualitative assessments is significant. This population is frequently characterized as “vulnerable” and “difficult-to-reach,” which often translates to an excuse for a researcher’s inability to obtain their active participation. Our recruitment efforts were successful because they were targeted to the spaces and places where the intended audience was likely to be found. Additionally, about the sample, 40% was comprised of men. Similar to the aforementioned characterization of African Americans, discussions with men about unintended pregnancy are limited. Most often, the topic is left the responsibility of women, with little consideration for the perspectives of male partners. More opportunities to elicit the perspectives of male partners are needed.A qualitative approach proved to be useful for assessing young people’s perspectives on unintended pregnancy as well as their thoughts about mobile technology as a viable platform for health promotion. While it was clear that many participants had received some form of sexual health education, many still expressed that young and emerging adults want and need additional sexual health resources and that a platform, such as one that is mobile-based, could be widely accepted, address needs to lower disproportionate rates of unintended pregnancy, and address barriers related to access to health information. An essential next step to build upon this study is to use these findings to inform the development of a mobile-based unintended pregnancy prevention and sexual health program prototype. Based on our findings, we offer the following recommendations to developers, researchers, and program planners working in this area:Integrate sexual health content (highlighting unintended pregnancy) into a mobile app.African American young adults recognize unintended pregnancy as an important issue. Develop content and messages that reflect this.Allow for participants to navigate the app on their own as well as allow group interactive features.Provide real-life scenarios such that it is clear that decision making can be challenging when one is in a compromised or heat-of-the-moment situation.Provide authentic reasons why unintended pregnancy at a young age can be difficult. Highlight stories from teen parents who can share their experiences.Provide information on a variety of topics including condoms, contraception, relationship dynamics, emotional dynamics of young adulthood, sexual decision making, and sexual orientation. Our participants did not support including messages about abstinence or less effective contraceptive methods.Ensure that the design of the interface is modern and reflective of images and language that resonate with the demographic.Ensure compatibility with social media.Given our success of obtaining young and emerging adult perspectives for the current study, it would be advisable to include young people in the prototype development process as well. Once a prototype is developed, pilot testing for uptake and acceptability as well as outcomes such as improvements in knowledge and behavior would be appropriate before larger scale-up.


Assessing the cost-effectiveness of interventions for people with dementia, based on cost per quality-adjusted life years (QALYs) gained, requires that the measures used to derive QALYs are preference-based whilst also being valid, feasible to use, comprehensible and acceptable for people with dementia. The aim of this study was to assess the content and face validity of six preference-based measures (PBMs) within the context of dementia.Qualitative focus groups and interviews were conducted with community-dwelling individuals with mild dementia and carers of people with dementia. After exploring participants’ understanding of ‘quality of life’ (QoL), six PBMs were assessed for content and face validity: two measures assessing health-related QoL (EQ-5D-5L and AQoL-8D); two covering broader aspects of capability wellbeing and social care-related QoL (ICECAP-O and ASCOT); and two dementia-specific QoL measures (DEMQOL-U and AD-5D). A random mix of one health-related QoL measure, one wellbeing measure, and one dementia-specific measure was explored in each session. All sessions were audiotaped and transcribed verbatim. Data were analysed thematically.Nine individuals with mild dementia and 17 carers of people with dementia participated across 4 focus groups and 10 interviews. Participants perceived 9 broad QoL domains as relevant to them: Activity, Autonomy, Cognition, Communication, Coping, Emotions, End-of-Life, Physical Functioning, and Relationships. These domains had limited overlap with the content of the six PBMs. Assessment of face validity was summarized into eight themes: (1) ambiguous questions, (2) double –barrelled questions, (3) difficult/abstract questions, (4) judgemental/confronting questions, (5) lack of relevance and comprehensiveness, (6) response options, (7) layout/format and (8) proxy-response. There was no clear preference for one of the six measures explored; participants identified advantages and disadvantages across all measures. Although particularly designed for individuals with dementia, dementia-specific QoL measures were not always favoured over non-specific measures.Given the shortcomings of PBMs identified in this study, further empirical comparative analyses are necessary to guide the selection of PBMs for future dementia research. Dementia is a syndrome that is characterised by the impairment of brain function, which affects language, memory, perception, personality and cognitive skills . While tMany healthcare reimbursement authorities internationally use economic evaluation to assist policy and reimbursement decisions, where costs and benefits of alternative interventions are compared . Cost-utOne of the fundamental challenges in generating cost-effectiveness evidence for interventions in dementia is selecting the most appropriate outcome measures , 10. To Despite the fact that generic PBMs differ greatly in their coverage of QoL domains, they generally focus on health-related aspects of QoL. Yet, a previous study has indicated that older adults often derive QoL benefits from interventions that are not directly related to health  . In receRecently, dementia-specific PBMs have been developed for use in economic evaluation, such as the Dementia Quality of Life Utility (DEMQOL-U)  derived In addition to the availability of several outcome measures that focus on different aspects of QoL , there are also measurement difficulties associated with the collection of QoL data in dementia –34. ProbCollectively, all these aspects may jeopardize reliability and validity of QoL data from people with dementia. Nevertheless, economic evaluation based on QALYs requires measures that are valid, feasible to use, comprehensible and acceptable for people with dementia. Using non-validated PBMs for the assessment of cost-effectiveness of healthcare interventions can result in suboptimal funding decisions . Given tThe report of this qualitative study followed the Consolidated Criteria for Reporting Qualitative Research  and adheQualitative focus groups and interviews were carried out between August and December 2017 to explore the face and content validity of PBMs. Focus groups consisted either of people with dementia or of carers of people with dementia. Individual interviews were used complementarily, allowing the research team to accommodate participants who would have been otherwise unable to participate in the study due to travel distance, caring responsibilities, or being uncomfortable with focus group participation.This study recruited people living with dementia and carers of people living with dementia (not necessarily dyads) within the Greater Melbourne region of Victoria, Australia. Dementia Australia, Carers Victoria, the Florey Institute, and the Cognitive Dementia and Memory Service (CDAMS) clinics advertised information about the study using newsletters, social media and flyers. Interested potential participants were directed to contact the study team who completed an eligibility screening over the phone. Community-dwelling people who self-reported a diagnosis of mild dementia, were 60 years and above, and were able to speak and read English were eligible to participate. Level of cognition was assessed via the 11-item telephone interview of cognitive status (TICS) . IndividSix measures were included in this study. These were the EQ-5D-5L, AQoL-8D, ASCOT, ICECAP-O, DEMQOL-U and QOL-AD. Table Interviews were conducted and focus groups facilitated by LH  and LE , with an observer (JB or LE) acting as note-taker. Focus groups and the majority of interviews took place at a University campus; some interviewees elected to participate at their home or other public place.A semi-structured topic guide was used with open-ended questions supplemented with probes, where necessary, to enable responsiveness of participants’ emerging accounts and perspectives. Each interview/focus group consisted of two parts. In the first part, participants were asked to reflect on their understanding of the term QoL and factors influencing it, including the impact of dementia. Carers were encouraged to reflect on their experience of caring for someone living with dementia and how dementia affected the QoL of the person living with dementia. Data retrieved from the first part was used to generate domains of QoL that are relevant and important to participants in order to determine their inclusion or omission in existing PBMs to assess content validity.The second part of the interview/focus group comprised a cognitive debriefing exercise in order to assess the face validity of PBMs. Participants were provided with copies of three of the six PBMs to minimize burden. These included one measure of HRQoL (EQ-5D-5 L or AQoL-8D), one measure of broader wellbeing (ICECAP-O or ASCOT), and one dementia-specific measure (DEMQOL or QOL-AD). In each interview/focus group, participants explored whether selected measures’ items and responses were appropriate and acceptable, interpreted accurately and relevant to participants’ lived experiences. Participants were asked the following questions: (1) What are your immediate thoughts about this questionnaire? (2) Is the wording of questions and response options clear? (3) Do you think this questionnaire is applicable to people living with dementia? (4) Is it comprehensive enough? (5) Are there any aspects of QoL missing? (6) Do you find it easy to complete? Carers were asked to reflect on how the person they care for would answer these questions and the feasibility of completing these measures on behalf of the person with dementia.The sequence of measures was varied between the interviews to account for ordering effects and each measure was explored seven times across the interviews/focus groups. Carers were, generally, given a combination of measures that resulted in more items  compared with measures that were discussed with people living with dementia . Measures were not shared with any study participants prior to the sessions. Focus groups lasted for 90 min, whereas interviews took between 60 and 80 min. In each interview and focus group, the first 20 to 30 min were spent on part one. Most of the time was spent on the second part of the interview, i.e., the exploration of the PBMs. All sessions were audiotaped and transcribed verbatim prior to analysis. At the beginning of each interview/focus group, participants were asked to complete a short anonymous demographic questionnaire. All study participants were given a $30 gift card upon completion of the interview as a thank you for their time and participation.Transcribed interviews were first imported into NVivo 11 to facilitate data coding and retrieval , and anaThe thematic analysis of part one focused on the identification of QoL domains that were perceived as relevant to study participants. To assess content validity, these domains were then compared with the content of the PBMs. The second thematic analysis, for part two, summarized the comments made by study participants for each of the six PBMs to evaluate the face validity. Data analysis was carried out by LE, LH and JB and involved regular discussions with the research team.n = 4 carers; n = 6 people with dementia) and 4 focus groups . Characteristics of the study participants are provided in Table In total, 9 individuals with mild dementia and 17 carers of people with dementia (five were dyads) participated across 10 interviews  and cared for their partner (59%) who most commonly had Alzheimer’s Disease (65%), although other types of dementia were also reported. Carers provided informal care on a daily basis (82%), which reflected their shared living situation (47%). However, 4 carers (24%) provided informal care to a person with dementia residing in a care institution, 2 carers (12%) for a person with dementia who was living alone and 3 carers (18%) reported that the care recipient had passed away.Study participants identified a range of aspects of QoL that they perceived as important. These were thematically summarized into nine domains: Activity, Autonomy, Cognition, Communication, Coping, Emotions, End-of-Life, Physical Functioning, and Relationships.…satisfaction with what you’re doing, that you have things that gives you a sense of being, a sense of doing something and being actively engaged” (PWD4). It ultimately emphasized the importance of “…being purposeful” (PWD4). Study participants also mentioned the small things in life that bring them joy. One study participant said: “I can still have a drink of red wine. I can go to the races. I’m just enjoying myself” (PWD1). In addition to doing things on their own, engaging with the community was also important: “So that community is incredibly important to us. But then also networks within the local community, like simple as it sounds, him independently meeting people at the coffee shop” .The activity domain refers to the day-to-day life of people living with dementia and the desire to undertake enjoyable and meaningful activities. It describes the: “If somebody starts to lose their control, whether it’s over physical or mental or any other capacity – of course, that greatly affects their quality of life” . Carers often witnessed firsthand when the person living with dementia starts to lose certain abilities, and made comparisons between the person’s past and current levels of independence: “Mum’s always been an independent person […] from the banking to the shopping, decision making, living on her own, not accepting help from others, providing the help to others, being there. […] It’s now at the stage where this independence comes down to things like toileting” .Retaining one’s own identity and autonomy was key to maintaining good QoL. In particular, carers discussed the importance of a sense of control and independence, which people living with dementia are often unable to uphold as the condition progresses: “your thoughts are muddled” (Carer2), there is also often confusion. One carer described: “…she’d get very confused in areas that she wasn’t familiar with. And on a number of occasions, would actually say to me: Who is that person sitting next to me?” . People living with dementia also talked about their forgetfulness and how it made them feel: “Well – being forgetful means that I just forget, and that’s tough. I wish I didn’t forget” (PWD3). While people in the later stages of dementia often lack awareness and insight, carers described that in early stages “They’re very aware of their memory. But they’re also aware that they forget everything” .Dementia has a large impact on a person’s cognition. However, different aspects of cognition can be affected and were mainly discussed by carers of people living with dementia. Alongside a lack of concentration, where “…At the moment now she’s also losing her words and there’s a frustration in her with verbally not being able to communicate what she feels” . As a consequence of this, people living with dementia may not be understood by others: “Well, he will answer the phone, but then he says all these silly things, muddy things. The person at the other end doesn’t know what’s going on” . On the other hand, people living with dementia also have difficulties understanding other people, especially in a crowded environment: “If there’s a lot of people talking, I wouldn’t pick it up” .Besides cognition, dementia also affects people’s communication skills and their ability to express themselves verbally. This often causes feelings of frustration as a carer described: “We have to run a very disciplined diary […] I’ve lost a lot of the capacity to plan things or I forget them” (PWD4). People living with dementia often recognized that they were losing their abilities and level of independence and a further coping approach discussed was acceptance of the situation: “Yes, she’s [wife] taken over all the finances. I used to run all our finances…Well, it wasn’t okay for me but it was something that was necessary” (PWD4). Others, however, would withdraw “because [they] don’t want to be ineffective with people, or do things that are not loving towards people” (PWD3). Carers observed that the person living with dementia was in denial: “…often enough she’ll blame me, often enough she will deny that something she’s been told, or something that she’s been made aware of, and that is a bit frustrating” (Carer4). Some people living with dementia had held onto their religion or spiritual beliefs to cope with their situation: “This is where I get religious, God is good, and God will look after me, and there’ll be lots of fulfilling things happen anyhow, so I’ll just go with it” (PWD3).To pursue a good life despite dementia, carers and people with dementia discussed different ways to cope with dementia. A key mechanism to adapt/adjust to the condition was to create structure in day-to-day life: “trying to keep [them] happy” (Carer3). With the loss of independence and cognitive decline, people living with dementia often experienced anxiety and feelings of frustration: “She doesn’t know where the toilet is. That then brings on an anxiety and behavioural issues” . Especially in the early stages of dementia, awareness of their forgetfulness frustrated people living with dementia: “Well, I was forgetting things, that was one of my major problems which was very frustrating for me, and probably for my husband as well, because I’ll ask him a question and then half an hour later, I’ll ask him the same question” (PWD6).Different emotions were discussed, reflecting the experiences of people living with dementia that were both positive and negative. While people living with dementia talked about the various things that brought them joy and happiness in life, carers perceived that their role was to “…I think I’m confronted by my own death more than I have before […] I’m confronted with my mortality through this diagnosis” (PWD3). However, often a diagnosis had been made too late and had left people living with dementia with fewer choices: “I feel if he had a proper diagnosis before then…there probably would have been more choices” (Carer2). People living with dementia were not only confronted with their own death but were also concerned about the future of their loved ones: “The only thing that distresses me about it is the thought that I am going to die and she is going to be left” (PWD 5). Carers of people living with dementia living in a residential aged care facility also discussed the importance of the environment when nearing end-of-life: “I really came to the conclusion that the mission of anybody who’s caring for people with dementia is to help them to come to their end-of-life, and that does not happen in the residential facilities. People just die anonymously […] They just go on and are forgotten” .Receiving a diagnosis of dementia meant for many people with dementia that they had to make important end-of-life decisions: “I’m able to get around; I can dance, I can walk, I walk my dog round the place every day, twice a day. So physically I am fit” . As physical functioning declined, the ability to self-care reduced: “My Mum still showers herself. Sometimes she doesn’t clean her teeth terribly thoroughly and she has incontinence and wears pads” .Staying physically fit was discussed numerous times, as the key to maintaining a certain level of independence but also being able to undertake enjoyable activities: “Oh, I think it’s very important, and a good family too, especially the grandchildren, I enjoy seeing them” (PWD 6). Carers also perceived that their role was to maintain the levels of quality of life of the care recipient: “Well, if I wasn’t there, his quality of life would be awful. He would’ve burnt the house down, sort of thing. He does need someone there - so I try to keep his quality of life” . In this context, carers also talked about the importance of treating the person with dementia with respect and dignity: “I think a sense of self-worth, a sense of quality of life, is respect and being treated as an adult who has contributed to society” . With the greater reliance on carers, people living with dementia also expressed their concerns about being a burden to others: “Well sometimes I feel, that it concerns me a little bit, if my dementia gets worse that would be a bit of a strain on him. That concerns me” (PWD 6). People living with dementia also talked about their perceived level of acceptance by others, especially around their diagnosis: “…because there’s so many people that are accepting. If I didn’t have a whole heap of people accepting me, then maybe it would be more important, but if a few fall off the boat at the moment because they can’t cope with my Alzheimer’s, well, that’s their problem” (PWD3).Having meaningful interactions with family and friends was considered an important aspect of quality of life: “Activity and Physical Health. While most measures also capture some aspects of positive and negative Emotions (with the exception of the ASCOT) and Relationships (except for the AD-5D), none of the measures contain items related to End-of-life aspects that ware identified as important aspects influencing QoL. Only the ICECAP-O asks about concern when thinking about the future, which overlaps with the end-of-life domain. Coping features only in the AQoL-8D. The AQoL-8D was also the only measure, besides the DEMQOL-U, that assesses Communication abilities. Not surprisingly, only the two dementia-specific PBMs contain items related to Cognition, but are also the only measures that do not contain items related to Autonomy, such as control or independence.A comparison of these domains and sub-domains with the content of the descriptive systems of the six existing PBMs revealed that the measures captured some but not all domains that were perceived as relevant Table . All meaA second thematic analysis was undertaken of participants’ comments when assessing the face validity of the measures. This analysis revealed eight themes: (1) ambiguous questions, (2) double –barrelled questions, (3) difficult/abstract questions, 4) judgemental/ confronting questions, (5) relevance and comprehensiveness, (6) response options, (7) layout/format, and (8) proxy-response. It should be noted that comments made on dementia-specific measures refer to the original measure and not their preference-based versions. Each of the eight themes is discussed in more detail below and illustrative quotes are presented in Table  judgemenAmbiguous questions refer to questions in which there is more than a single way to interpret it. Participants identified a number of ambiguous terms across multiple measures. Particularly questions in the ICECAP-O created ambiguous interpretation for people with dementia because certain terms, such as ‘independence’ were perceived as vague that could have more than one meaning .required to have two concepts in your mind at once and interrelate them” , which could be challenging for people with dementia.Study participants also discussed double-barrelled questions, which refer to questions that touch upon more than one issue, yet allow only for one answer. This was often an issue for composite questions, where two different concepts were merged into one question, such as relationships with friends and family (AQoL-8D), love and friendship (ICECAP-O), or the combination of anxiety and depression in the EQ-5D-5L. Carers also thought that the ASCOT contained a number of questions that “…Some questions were generally perceived as difficult if they required respondents to reflect in an abstract way on their lives. There were some words in the AQoL-8D that were not clearly understood by some study participants and also the dignity question of the ASCOT received mixed responses, where some participants stated that they have never thought about ‘how having help makes them think and feel about themselves’. With regard to the DEMQOL, some carers expressed concerns particularly regarding section 2 (memory) and section 3 (everyday life), which would be difficult to answer for people with dementia.Everything you say to them must be carefully vetted, in case it can be interpreted as judgemental” . Numerous questions across measures appeared to be problematic, such as the ASCOT cleanliness and accommodation, where people with dementia may not want to give the impression that their house is not clean. As a potential explanation for their motivation to lie, one carer described that “they didn’t want anyone to take them out of their own home, their own environment” (Carer1). There was also a discussion around the importance of asking memory-related questions. Particularly for the DEMQOL, which contains a number of memory-related questions, carers felt that by asking such questions, the person with dementia would feel judged or offended, and will be immediately at the defence. Carers also talked about the person’s with dementia potential motivation to influence someone that was applicable to all measures: “…even if they could understand okay, wouldn’t necessarily answer it at face value. It would be reflecting a range of other considerations about, for example, what they want to communicate or how they want to influence someone” .A number of carers thought that some of the questions were judgmental, confronting or offensive. As a carer stated: “snapshot” and should be interpreted as “a touching point” . A similar comment was made with regard to the EQ-5D-5 L, which was perceived as: “…a softy. It’s not very inquiring, I guess.” (PWD4). Compared with the EQ-5D-5 L, that was described as ‘objective’, the ICECAP-O was perceived to be about ‘subjective issues’ , which covers a number of good and relevant questions. Mixed opinions were expressed towards the relevance of question 2 of the ICECAP-O (thinking about the future) and the relevance of the memory section of the DEMQOL. Participants also identified some domains that were missing, such as being bored’ and a question targeting the relationship with the partner in the AQoL-8D, questions related to negative emotions in the ICECAP-O, and a question about the ability to be organized in life in the DEMQOL.The AQoL-8D was perceived as a comprehensive measure, covering a number of relevant questions, although study participants noted some repetition and irrelevant questions. Some irrelevant questions were also noted for the ASCOT . While study participants thought that all questions of the QOL-AD were relevant, they cautioned at the same time that they would only provide a “. Several response options were also not mutually exclusive that were found in the AQoL-8D and the ICECAP-O.There were great differences in terms of the format across the measures. Carers felt that measures presenting the question and response options as a series of statements (e.g. EQ-5D-5 L or ASCOT) were more appropriate for people with dementia. On the other hand, it also increases the amount of reading and some participants did not like lengthy response options. Response options that referred to frequencies, such as often, never, most of the time etc., included in the AQoL-8D, were generally perceived as more difficult to comprehend relative to response options embedded within questions“if it’s too long, they’ll get in a muddle” . While the length of the EQ-5D-5 L was perceived as acceptable ), carers and people with dementia thought that the AQoL-8D was too long. In this context, the amount of reading was perceived as important, “…as some people with dementia struggle with actually reading and interpreting what’s there” . The amount of reading was particularly an issue for the ASCOT, which despite being a “very short and pretty easy” questionnaire (PWD2), contained “too many words” , which would be very challenging for a person with dementia. Furthermore, the usefulness of instructions was discussed and it was noted that some instructions in the ASCOT were skipped. Also the reference to the recall time in the instructions was mentioned. When discussing the DEMQOL, which refers to the ‘last week’, one carer noted difficulties with regard to the feelings section and stated that: “…in his [partner’s] case, he would be both cheerful and enjoying life as well as distressed and sad and lonely – all within a fairly short time frame?” (Carer2).The general layout and the length of the measures were also discussed. To be appropriate for use in individuals with dementia, carers emphasized that the measures need to be short. Otherwise, it’s hard to put yourself in someone else’s shoes”  and you are “…almost second-guessing” . However, some carers stressed that it is “…all about interpreting […] the body language”  and knowing the person well. In this context, things that can be observed, such as mobility or personal-care of the EQ-5D-5 L were perceived as easy to answer by carers. In contrast, questions around feelings, such as those included in the DEMQOL or ICECAP-O “…are very much subjective, and it’s difficult to honestly answer” . Part of the problem was also that carers never talked about certain aspects of life with the person they provide care for. The challenge to answer on behalf of the person with dementia was increased if carers themselves did not easily understand the questions. Questions related to memory in the DEMQOL and QOL-AD were “…easier to answer, as […] you’re a witness to these things” . Despite providing clear instructions, there was a general confusion about the proxy assessments in terms of whether it should be conducted from a proxy-proxy perspective (asking proxies to rate the QoL in their proxy’s opinion) or proxy-person perspective (asking proxies to rate how they think the person with dementia would rate his/her own QoL if the person was able to communicate). After asking to what extent this would change their responses, one carer stated that she “would just go one step more severe in most of the answers”  if she would answer these questions from her own perspective.Answering the questions on behalf of a person with dementia was generally perceived as a challenging task, as “…This study used qualitative methods to further explore the content and face validity of PBMs in people with dementia and carers of people with dementia. A key focus of this study was the exploration of QoL measures based on different conceptual frameworks. The results of this study have shown that the six PBMs captured some but not all domains of QoL that were perceived as relevant. Particularly, the omission of cognition, communication, coping, and end-of-life aspects was prominent. Unsurprisingly, the most comprehensive PBM, the AQoL-8D (35 items), showed the greatest overlap with domains of QoL that were considered as important, although some redundancy was also noted, given it is a generic measures with some questions being less applicable to people living with dementia. While a lengthier questionnaire may appear favourable, our study findings also indicate that the evaluative space  seem to play a greater role in determining the content validity. For example, while the EQ-5D-5 L and ICECAP-O contain equal number of questions, the ICECAP-O adopts a broader evaluative space that goes beyond health-related aspects of QoL, which resulted in a greater overlap with domains of QoL that were perceived as important.At the same time, the focus on a broader evaluative space diminished the simplicity and clarity of questions and response options. The resulting shortcomings of the ICECAP-O identified in this study are also in agreement with the study by van Leeuwen and colleagues in the Netherlands, who highlighted items of the ICECAP-O that were not always understood by older adults (Role item), double-barrelled items (Love and Friendship item), and response options that were not mutually exclusive . We alsoWe were also able to confirm the findings from previous studies in relation to the EQ-5D  that showed that despite its overall acceptance , 63, it This study found that dementia-specific measures were not always favoured over non-specific measures. The development of the descriptive classification systems of the two dementia-specific preference-based measures used psychometric analysis to attempt to cover the key areas of QoL , 59. HowGiven the shortcomings in the content and face validity of existing measures, the selection of appropriate PBMs for use in economic evaluation requires careful consideration. This study could not identify one particular measure that should be recommended for future use, as the measures either lacked content validity or face validity or both. Acknowledging that the measurement of QoL is inherently subjective and that there is no gold standard, trade-offs need to be made. Our study findings have shown that when choosing one of the existing PBMs, comprehensiveness could be compromised by selecting a more feasible measure. For example, the EQ-5D-5 L was perceived as an easy and straightforward PBM but lacked content validity due to its generic nature. One option would be to complement a generic PBM with a dementia-specific PBM in an economic evaluation. Yet, our study identified omissions of important QoL domains in the DEMQOL-U and AD-5D, suggesting the need for a revised descriptive system or a new PBM. While not dementia-specific, there is currently a project underway that aims to develop a PBM for assessing the cost effectiveness of interventions across aged and social care, the Quality of Life Aged Care Consumers (QOL-ACC) , 72. ThiAdditionally, to guide further the selection of measures for future dementia research, empirical comparative analyses are warranted. This study focused upon content and face validity only but other psychometric criteria need to be assessed, including construct validity, reliability, and very importantly, responsiveness to change. In this context, another layer of validity issues will arise when considering the utility values attached to different states as described by the respective PBMs. The measures considered in this study sought exclusively preferences from the general public, except for the AQoL-8D, that included also people with mental health problems . While tIn determining an appropriate PBMs within the context of dementia, there are also a number of contextual aspects that should be considered. Although not fully explored in this study, our findings have indicated that the choice will depend on the severity of the condition, the setting, as well as the specific domains targeted by the intervention. Eliciting QoL data via PBMs may also be comprised by external factors, such as community attitudes and the role of the interviewer or the provision of assistance, which could influence people’s responses. The timing and location of data collection form additional considerations. Previous research described significant fluctuation in cognition, function, or behaviour in people with dementia, which denotes departure from usual symptom expression, often characterised as ‘good’ or ‘bad’ days . This boProblems with cognitive function in people with dementia may compromise their ability to make judgments and give accurate responses. As such, proxy assessment to substitute or complement self-assessment is often sought. However, the reference against which one judges QoL is a key issue and the ability of the proxy to distinguish between own views and the view of the person with dementia is crucial. If taking a proxy-proxy perspective, it is important for proxies to disclose their QoL perceptions that may deviate from the patient perspective. If taking a proxy-person perspective, the agreement will highly depend on the discrepancy in expectations between the patient and the proxy. The assessment of QoL has been described as the gap between expectations and present experience . Given tAs previous qualitative studies have focused on content and face validity of a limited number of measures, a strength of our study is the exploration of six PBMs. Yet, other PBMs exist, as well as different versions of the measures explored in this study , in addFurthermore, the comparison of the content of PBMs with domains of QoL identified in this study was based on subjective judgements. It may be the case that some PBMs could capture some of the domains indirectly, which could be explored through psychometric testing. The self-report of the dementia diagnosis poses another limitation as well as the inclusion of people with mild dementia only. Nevertheless, by including carers of people with moderate and severe dementia, we were hoping to reflect the views of people with dementia across the entire severity spectrum. Due to recruitment difficulties, we were only able to recruit nine individuals living with mild dementia and may not have reached data saturation, which is the point whereby additional interviews are not expected to yield new or valuable information.The ongoing accumulation of validity evidence of PBMs for application to people with dementia and carers is essential, particularly as such measures have significant implications for the assessment of cost-effectiveness of interventions targeted for the condition. This study provided further evidence of the content and face validity of six PBMs and identified a number of aspects which may compromise the validity of data collected. Researchers should consider the advantages and disadvantages cross all measures when choosing a PBM and take the contextual aspects into account, which may favour some measures over others. Building on our findings, future qualitative studies are warranted in other settings, in addition to empirical comparative studies exploring these measures further to guide the selection of measures for future economic evaluation.


World Health Organization (WHO) International Classification of Diseases – Oncology (ICD-O) and one of the WHO Classification of Tumours series of books (the WHO “blue books”) [WHO Classification of Tumours—Soft Tissue and Bone Tumours, and many others are legitimate candidates [Pathologists diagnose cancers by looking at how their morphological, histochemical and molecular characteristics cluster in a single case. Almost always this results in a high probability of a known pathologic diagnosis. Occasionally, clustering falls so far from any known paradigm that a new nosological entity is needed. If so, a new diagnostic label is proposed and possibly endorsed by the medical community, thus entering the “morphology” 5-digit entities of the  books”) . Just asndidates . Thus, iWHO Classification of Tumours—Soft Tissue and Bone Tumours, there is a wide array of soft tissue “tumors of uncertain differentiation”, but others can be found amongst the “fibroblastic and myofibroblastic tumours” or the “so-called fibrohistiocytic tumors” [Why, amongst cancers, are sarcomas so peculiar? First, they are highly heterogeneous. Only hematological neoplasms do present with so many subgroups. The pathologic heterogeneity of sarcomas was shaped by early pathologists on the basis of morphology. Then, immunohistochemistry confirmed and widened morphological partitioning. Eventually, molecular biology is doing the same today with morphological and immunohistochemical entities . Possibl tumors” . Indeed,It is worth noting that the lack of a normal counterpart does not necessarily mean the lack of “any” differentiation, atypical though it may be. Just as an example, a desmoplastic small round cell tumor (DSRCT) does not correspond to any known normal tissue, but displays a pathologic differentiation which is highly specific. Probably, it is no coincidence that it is related to an “early” cellular event crucial to the molecular pathogenesis of the tumor: a fusion transcript activating genes underlying, say, histologic desmoplasia. Desmoplasia is a hallmark of DSRCT, pathologically and clinically, and underlies some features of the natural history of these tumors, such as their forming gross abdominal masses. In the end, some sarcoma entities, though not resembling any normal lineage, may present with a specific new differentiation, possibly related to a known strong molecular pathogenesis. A distinct natural history and a distinct clinical behavior follow. Under several respects, synovial sarcoma, Ewing sarcoma or solitary fibrous tumor recapitulate this paradigm.WHO Classification of Soft Tissue and Bone Tumours [Today, precision medicine is all about molecularly characterizing any single case. As from its incepts, the ambition has been to lead to “a new taxonomy of human disease based on molecular biology” . In canc Tumours . While oOur working proposal to the sarcoma community is that new diagnostic entities in the sarcoma field should never reflect just a new cluster of morphological, immunohistochemical and/or biomolecular characteristics. Conceptually, when new clusters are appreciated, an attempt should be made to correlate them with a distinct natural history. It is true that in rare cancers as sarcomas, all the more in ultrarare cancers as virtually all new potential sarcoma entities, the low number of patients may make it difficult to generate relevant clinical data in due time. Thus, it may be useful to assume that some specificity in the natural history of disease will be more likely if the new cluster corresponds to either: (1) a normal line of differentiation; (2) a new clear-cut differentiation, possibly resulting from a known strong molecular pathogenesis. In this case, a provisional label could well be accepted, in order to facilitate clinical data collection. But the simple presence of a molecular characteristic serving as a predictor of sensitivity to any anticancer drug should never be enough. This is by no means an obstacle to the fact that it can help tailor medical therapy in any single case and determine the approval of new agents from the regulatory point of view in a histologically-agnostic manner.We hope that this point of view may be discussed within the sarcoma community. Possibly, any such discussion about the “extreme” area of sarcomas could also be of help to other cancer-based communities, at a time of precision oncology, which, as a by-product, can generate so many new molecular clusters.


Indeed, media portrayal of obesity has long been identified as one of the most influential sources in contributing to the development and maintenance of weight stigma attitudes and discriminatory behavior (e.g., Saguy and Almeling, They know what makes them fat and. dare I say it, they need to be shamed from eating and drinking too much” (Wilcock, A recent example includes highly stigmatizing comments from Lord Robathan who criticized NHS Staff and teachers with overweight and obesity saying that “Wilcock, . These cWilcock,  that demWilcock, .Framing of obesity as a societal “burden,” assigning blame and assigning individual responsibility, stigmatizing imagery, and language are well-known to contribute to the formation of stigmatizing attitudes and discriminatory behavior toward people living with obesity but also other health conditions. Media portrayal of obesity during COVID-19 has been no different. The impact of these media portrayals on influencing public opinion can be easily identified by reading the public responses sections or social media posts in response to media dissemination on these platforms.why lockdown is bad news for our kids' waistlines” (Lally, Moreover, the potential impact of lockdown on reducing physical activity, greater snacking, and more consumption of foods high in saturated fat, sugar, and salt which has been a continual line of messaging in media, for instance, “” Lally, . Across ” Lally, —all of wif you are fat, you are on death row,” “the reason this country is getting fatter is because we suffer from ‘can't-be-bothered-itis',” that people living with obesity should “take responsibility for their own health,” that they should “pay a premium for their healthcare” and that they should take matters into their own hands and lose weight rather than “blaming our genes” (Sulway, Finally, it is imperative that given the increased anxiety amongst the general population during the pandemic, and for some groups—which may understandably include people identified as at increased risk of severe illness and death, that media take steps to assess the contributions of invited guests that might also lead to negative consequences. For instance, during the COVID-19 pandemic, Steve Miller, a hypnotherapist, appeared on UK television saying that “ Sulway, . These s Sulway, . Indeed, Sulway, . Yet, deIn sum, experiences of weight stigma and discrimination is known to negatively impact physical and mental health and during the COVID-19 pandemic, these experiences which may be either directly or indirectly result from media portrayal may have a significant impact on people living with obesity. In line with previous calls (e.g., Flint et al., The author confirms being the sole contributor of this work and has approved it for publication.The author declares that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


Despite the well-known health benefits of physical activity (PA), older adults are the least active citizens. Older adults are also at risk for loneliness. Given that lonely individuals are at risk for accelerated loss of physical functioning and health with age, PA interventions that aim to enhance social connectedness may decrease loneliness and increase long-term PA participation. The objectives of this mixed-method study are to: (1) evaluate whether an evidence-based PA intervention  influenced PA and loneliness differently among self-identified ‘lonely’ versus ‘not lonely’ older adults and (2) to describe factors within CTM components most likely to promote social connectedness/reduce loneliness.n = 458 at baseline) at 0 (baseline), 3 (mid-intervention) and 6 (post-intervention) months. We conducted in depth interviews with a subset of older adults to understand how CTM facilitated or impeded their PA and social connectedness.CTM is a flexible, scalable, community-based health promoting physical activity intervention for older adults. Two community delivery partner organizations delivered 56 CTM programs in 26 urban locations across British Columbia. We collected survey data from participants , that modify the effect of an intervention on social connectedness outcomes for older adults engaged in community-based PA programs would be a welcome addition to the literature. Loneliness is closely linked with accelerated loss of physical functioning and health and age . We summarize socio-demographic characteristics for the whole sample in Table Results were similar for minimally and fully adjusted models, thus we focus on the fully adjusted model here Table . At baseResults were similar for minimally and fully adjusted models, thus we focus on the fully adjusted model here Table . By defin = 16) and women (n = 27), aged 60–74 (n = 33) or 75+ (n = 10) who identified as lonely (n = 26), not lonely (n = 16) or did not respond (n = 2). We present participant responses by time point , and whether participants identified as lonely or not lonely. Compared with not lonely participants, lonely participants more often discussed social connectedness factors  within each intervention component. Not lonely participants placed more emphasis on education and goal commitment. We focused our analysis on describing factors within CTM intervention components that may promote social connectedness/ reduce loneliness. The following themes were found: activity coach characteristics/personality traits and approaches; opportunities to share information and experiences and learn from others; engage with others who share similar/familiar experiences; increased opportunity for meaningful interaction; and accountability.Our deductive framework analysis consisted of three CTM intervention components as our categories. Below, we present each category and describe the themes , within each CTM intervention component, found to promote social connectedness/ reduce loneliness. We highlight the social connectedness indicators of each theme in Table Participants deemed the activity coach as essential to influencing social connectedness within all three CTM intervention components. Participants described distinct activity coach characteristics/personality traits and approaches that promote social connectedness/ reduce loneliness.Activity coach characteristics/personality traits and approaches: being personable , positive, accommodating, accepting, observant, careful, motivating, and approachable, offering encouragement and providing accountability.Oh, I really like it because it’s designed individually for me and [name of Activity Coach] is really easy to talk to and very personable. And so, yeah, when we had our one-hour session on Thursday where we discussed and made the plan for this coming week. And so when she said would you be interested, she was full of ideas. And she was good at taking my ideas and adjusting them. It’s personalized. So, yeah, which made it very manageable.Yeah, oh, so for the Choose to Move, yeah, having to be accountable, that’s an important thing for me, I find that once I make the commitment and I just-- really didn’t want to disappoint anyone else, as well as myself.Participants enjoyed being able to connect with an activity coach during the one-on-one consultation, and work with the activity coach to design a personalized action plan. This process enacted feelings of being listened to and cared for and supported development of a meaningful relationship between participants and their activity coach. The activity coach-participant relationship spurred feelings of motivation and encouragement.activity coach characteristics/personality traits and approaches; opportunities to share information and experiences and learn from others; engage with others who share similar/familiar experiences; and increased opportunity for meaningful interaction.Motivational Group Meetings were overwhelmingly considered of great value to create and sustain social connections. The following factors within the Motivational Group Meetings were found to promote social connectedness/reduce loneliness: Activity coach characteristics/personality traits and approaches: being positive, engaging, accommodating, accepting, observant, careful, motivating, offering encouragement and calls participants by name.Yeah, ‘cause when I missed one of the classes everybody said, oh, good to see you back. But they didn’t say “[name of participant].” But by the end of-- when (activity coach) said [name of participant], tell us what you’ve done, by the end of the class everybody goes, see you the next month [name of participant], right.She [activity coach] is so positive and she’s so encouraging. And she really knows her stuff. Because she really tries to engage everybody in-- she knows everybody and she knows everybody’s progress and ability. She is encouraging that way ‘cause she knows when someone is taking it slower ‘cause-- sprained ankle or not feeling well that day. And so she does that in the CTM too where she, you know, like, caters it kind of individually and often as a group. And it’s really hard to explain. But you do feel like you’re getting individual attention even though you’re also in a group getting to know everybody else.Opportunities to share information and experiences and learn from others promoted interactions between participants, encouraged the exchange of phone numbers, provided personal introductions, and engaged participants in paired and group discussions to share information on community resources.Well, everybody got to share what they did from the last meeting, and then-- like, every time, like, what we did and then if there were problems and what we plan to-- like, exactly what was in the email, but we said it out loud so everybody could hear. And I think everybody-- it was quite helpful, I think. When they had a solution to-- or everybody said, oh yeah, that happened to me. Or-- it was like bonding. So, it was nice, and everybody got to speak, and it was encouraged. And I don’t think anybody was really quiet about it. So, I think everybody enjoyed sharing. Yeah, and it was nice to speak up and see if other people felt the same way sometimes.I liked the meeting. I liked the fact that other people shared their difficulties. It makes me feel not so alone.There are so many people out there in our age group that would benefit from this if they knew about it. It’s-- so many of us people in, you know, in their 60s feel uncomfortable going to a gym because it’s, you know, full of 20 year olds and you feel like you don’t belong. And this-- with our instructor it just made us feel like we were part of a group like everybody else. It was a good feeling.Participants discussed how they enjoyed activities that offered them the opportunity to share information and experiences with other group members. Being able to learn from others created a sense of bonding, belonging and being cared for, and developed meaningful relationships.But it might be nice to have actually had a-- even if it was just a get together with the group, just to see how everybody else did. I know that one lady was wanting-- she had joined the group with the purpose of, you know, finding someone else to exercise with. Which is a good thing too. But there wasn’t a lot of social opportunity, I think, because we got information. We were given-- there was a video and there was talks and exercises and discussions about things that you did individually. But we really didn’t have a lot of opportunities to sort of talk to one another. And that’s [inaudible] I think everybody’s fairly shy. But it may be something that they could throw in, maybe halfway and again at the end. A little social time, a tea or something. And just everybody could sort of talk about how they’re doing things. ‘Cause we learn from what some of the other people were doing too. So that was a good thingSharing/learning opportunities within Motivational Group Meetings were considered a more fruitful way to promote social connectedness/reduce loneliness than were ‘lecture’ style sessions.Engage with others who share similar/familiar experiences promotes emotional and informational support to participants and offers space to share common characteristics or life experiences-- this fosters a sense of belonging and companionship.There were other people in the class that, when we all introduced ourselves, were having the same kind of struggles I had, the same kind of goals and were people that I thought, hmm, okay. There’s somebody I could probably call; see how they’re doing because they’re like me.Well, companionship or-- communication and companionship with the other people who are attending. Yeah, these weren’t people that I knew prior. It just-- I think it’s just more supportive when there are other people that you’re hearing are dealing with issues too that are similar, um-hum.Increased opportunity for meaningful interaction. Participants enjoyed the more frequent interactions during the active phase (first 3 months) of Choose to Move and felt the decline in motivational group meetings over the later months (taper phase) negatively influenced their sense of social connectedness.name (activity coach) did say they were continuing for three more months for checking in on us, right. And I’d assume it’s through email, right, that it wasn’t over. But it would have been nice, I think, to do it one last time, to end the program, just for a goodbye. I guess it’s because I like the group maybe too, yeah.Well, I think It was nicer when we met more frequently, I think. I think that was-- yeah, ‘cause we met-- the first while we were meeting once a week, then once every two weeks and then it got to the month. I think the interaction for some people is a good thing. Through the winter that was really nice to have that group to go back to every few weeks, that other group, yeah. I think maybe a little more interaction would be good.Activity Coach characteristics/personality traits and approaches that promoted a sense of social connectedness/ reduced loneliness during the Check-Ins.Participants described specific Activity coach characteristics/personality traits and approaches that promoted social connectedness during check-ins included: being personable , positive, someone who offers encouragement, accommodates, is accepting, motivates, provides accountability, approachable, high energy, makes sure to be available, takes time, listens, and is thoughtful.Well, I think if they were serious about trying to get more physical in their activity and-- slowly and realistically and with support from the class and the instructor. And also, like, personal checks, either how would they prefer, email, face-to-face or phone call. So, I think it’s a really good follow-up, because a lot of times you get lost in the programs or it doesn’t seem like anybody cares, so you don’t care.Especially the encouragement. I mean, that’s the main thing anyway for me. ‘Cause I live alone and it’s easy to not do anything. So, it’s very nice when someone phones you up and says, how are you doing and, you know, can I help you in any way, get some ideas together and stuff like that. So that helps a great dealThe phone calls are very encouraging. So that helps a lot. Yeah, she’s [activity Coach] fabulous. Really is a dear friend already so-- wonderful lady, and a very good encouragerAccountability promoted social connectedness by providing participants a sense of responsibility to the Activity Coach and to themselves and the other older adults in their group. The pre-planned check-in offered a consistent point of contact for participants that many looked forward to. Participants were accountable to the Activity Coach, which motivated and encouraged participants to engage in activity.I mean, she’s right on top of it because she’ll make-- actually make an appointment for you. So that’s a good thing too, right. Because like I said, because I’m so busy doing stuff, that way I already-- it’s sort of pre-planned. I know she’s going to be phoning on that day, approximate time and all that. So, it’s not like I-- you know, so I already know that’s going to take place, and that’s great, yeahWell, I thought it was good. And she was excellent, and she made sure before she hung up that we had a date set and I had it written in my calendar. A date and time that she would call her next call. So, all the time when you’re-- if you weren’t doing something, in your head you know oh, you-- I’ve got to tell [name of Activity Coach] that I haven’t been doing anything. So, it’s just that little guilt trip there too, I guessCTM influenced PA and loneliness differently among older adults who identified as lonely versus older adults who identified as not lonely. It is not clear within an array of intervention mechanisms which ones directly or indirectly influence intervention effectiveness . Thus, wIt was telling that more than half 58%) of older adults in our study identified as lonely at baseline. In a recent systematic review % of olde, as theyIt is perhaps not surprising that lonely, as compared to not lonely participants, valued different parts of CTM program delivery. Activity coach characteristics/personality traits were the nexus of CTM program effectiveness—and especially valued by lonely participants. Activity coaches promoted social connectedness across all three CTM components. They were considered key to older adult participation  and CTM’In the motivational group meetings participants described the importance of sharing information and experiences, learning from others and engaging with others who shared similar/familiar experiences. Their perceptions distinguished between a group of older adults in a room receiving a ‘lecture’ about aspects of health versus embedding strategies that foster interaction and communication among the group. Oral or video presentations may reduce social isolation by increasing social contact, but may not generate feelings of being cared for, belonging or the development of meaningful relationships . Social Check-ins were instrumental to develop meaningful relationships between older adults and their activity coach. However, motivational group meetings were the core component that influenced social connectedness. Understanding the program components of CTM that drive effectiveness is essential to optimize interventions . OptimizTo maintain benefits for individuals beyond the initial intervention, behaviour change must be maintained – a potentially challenging feat to achieve . While eWe acknowledge volunteer and recruitment bias as the reach of partner organizations was primarily to a white middle-class (on average) constituency. Given our relatively homogeneous sample, results cannot be generalized to older adults who are marginalized by virtue of sex, gender, geography, socio-economic status, health status and/or ethnicity . We randWe classified participants as ‘lonely’ if they responded ‘some of the time’ or ‘often’ to any of the three questions on the questionnaire . We acknFinally, we used a single item, self-report measure of PA as a means to reduce participant burden and to enhance feasibility of a province-wide evaluation. We acknowledge the potential for social desirability bias with self-report measures. In addition, although the single item PA questionnaire demonstrates acceptable reliability  and valiFirst, given the ‘epidemic of loneliness’ that plagues many countries currently , PA and