“It cannot be boring!”: Developing a measure of function for young adults accessing integrated youth services – Journal of Patient-Reported Outcomes

Conceptualization of function (Phase 1)

Demographics

Nineteen participants made up two focus groups. Participants ranged from 19 to 25 years old, with a median age of 24 years old. Seven (37%) participants identified as female, twelve (63%) identified as male and one participant (5%) identified as non-binary. The majority of participants (63%) identified as White. Six (32%) identified as First Nations/Metis/Inuit, three each identified as South Asian, Black/African and Hispanic/Latino (16%), and two identified as Middle Eastern/North African (11%). Two participants (11%) were attending school only, three (16%) were employed, one (5%) was attending school and had employment, while twelve (63%) participants were unemployed and not in school. Seven (37%) participants were looking for employment, and six (32%) were not. Six (32%) participants had a high school diploma and seven (37%) had some high school. Three (16%) participants had some college or technical school education, two (11%) had some university education, and one (5%) had a bachelor’s degree. Ten (53%) reported living in a single room occupancy (SRO) hotel, group home, or Covenant House. SROs are a low-cost housing option in Vancouver typically made up of single rooms ranging from 8-12m² in size, including a sink, hot plate, and shared washroom facilities [4, 5]. Four (21%) participants were living with someone else and six (32%) were living in an apartment. Participants’ self-reported mental health diagnoses included mood disorders (79%), anxiety disorders (74%), post-traumatic stress disorder (PTSD) (32%), other disorders (32%) and psychotic disorders (16%). Most participants (69%) reported using alcohol, 53% reported using cannabis, and 31% reported using substances in the last two weeks.

Conceptual model

Participants provided diverse and wide-ranging definitions of function, which fit into three broad themes of (1) basic needs (2) roles and participation and (3) social connection described in Fig. 3. Basic needs include the subcategories: diet, sex, self-regulation, substance use, personal hygiene, sleep and exercise. Roles and participation include the subcategories of school and work, exercise, goals, engagement and enjoyment, service use and managing daily life. Finally, social connection includes the subcategories of healthy relationships, communication, social norms and support networks.

Depiction of conceptualization of function from the perspective of young adults with mental health challenges accessing integrated youth health services in an urban setting. The model has three integrated parts: (1) basic needs, (2) roles and participation, and (3) social connection

Spectrum of function

Participants described a spectrum of function, from low to high. Additionally, participants depicted various elements, such as self-regulation, participation and social relationships as interacting, leading to downward spirals. One participant described, “if lots of things are not going the right way in your life, you might be stressed which would lead to more low function.” Conversely, participants described how elements can snowball and build functional gains, describing “let’s say you finish part of your studies, or you find something that was important to you… I feel it gives you the confidence and inspires the drive to pursue more or go further down the path.” Numerous other elements were described as interrelating; components of managing daily life, such as organizing time, were depicted as highly related to basic needs such as diet or sleep, with participants describing the importance of “eating habits and sleep routines.” Participants framed goals relative to “societal productivity standards,” and “milestones” therefore sharing a close relationship with social norms and “fitting in.” Additionally, one participant noted how healthy relationships shape self regulation, stating that when “surrounded by people who have confidence in you, you have confidence in yourself.” Given this, our conceptual model depicts these themes as dynamically interacting (Fig. 3).

Basic needs

Sleep

Participants highlighted the importance of a sleep schedule, and expressed that low function involved “not sleeping for 3 days straight.” In addition to getting enough sleep, participants noted that during periods of higher function they were “able to just get up.”

Self-regulation

Participants spoke of how function well involves actively controlling thoughts, emotions, attention and focus. Participants shared that function entails “establishing and maintaining emotional stability,” “being aware of your thought patterns” and having “control of your thoughts.” Participants highlighted that controlling your thoughts might entail “different coping skills for when the situation occurs.” Other self-regulation strategies include “building exposure to your triggers”, “mindfulness”, being “aware of self-harm” and “processing things, in words of, like, how an operation or situation goes.”

Safe substance use

One participant said low function usually entails “trying to sedate myself with drugs.” Others suggested higher function entails “controlling your substance use.” Substance use was not restricted to elicit substances, with participants noting it “could be from cigarettes or hard drugs.”

Personal hygiene

Participants described that function well entails one to “brush your teeth and maintain proper hygiene”, while the lower end of function involved “not partaking in personal hygiene habits.”

Exercise

Participants noted that exercise is a central component of health that is integral to function. One participant described that during high function periods they “move daily.”

Diet

Participants highlighted that function well entails “eating right”; however, on the lower end of the spectrum, “you don’t keep good eating habits.”

Sex and intimacy

Participants also expressed that having safe sex is integral to function. As one participant noted, “This is important S@$* that not one talks to us about, but man it is all I care about, all that is important to me at this phase in my life, everyone dances around it- I would give up showers, eating, and work….this is what I care about as a 20-year old man”.

Roles and participation

Goals

Participants noted that higher function entails “knowing where you want to go and trying to achieve that.” Additionally, participants spoke of the importance of “hope” or “vision” for high function. Beyond setting goals, participants expressed that higher function entails “following through with plans or goals,” and that when functioning well, “plans that are in your head come into fruition and actions are executed fully.” Participants noted that this was a “large range” and “can be as simple as getting out of bed or working for a year.” Goals were framed in relation to life transitions and societal roles, with a participant expressing that low function entails not reaching “what’s expected when you grow up.” Participants provided examples such as “dogs, kids, house,” and “moving out.”

School/work

Participants mentioned that high function means to “go to school” or “go to work.” Additionally, participants depicted school and work as key goals, with one participant describing a goal of “being a social worker.” Many participants reporting being out of work or school, but highlighting this was critical to high levels of function. However participants also noted many barriers to returning to school/work, including disclosing a mental health challenge, low pay, complications with disability laws, and extended time away from the workforce or education system.

Daily life management

Participants expressed that function necessitates “life skills.” Examples given were “to keep reminders”, “cooking” and “cleaning”. Additionally, managing finances and medication was also mentioned. Being able to organize time was also brought up by participants, as was “balancing between needs and wants.” Managing daily life did not always entail maintaining the status quo, with participants noting that higher function may encompass “leaving your comfort zone,” and “breaking, maybe, a habit that would’ve caused you issues to begin with.”

Service use

Low function was depicted as “not making it to appointments.” Services highlighted as important to function include “psychiatrists,” and “case managers, peer support workers, doctors,” and “outreach workers.” Participants also spotlighted that function entails being able to use transit to get to appointments. Participants stressed that often appointments were not coordinated and in many locations across the city. One participant noted “my entire functioning in my day could often be just me getting to where I am supposed to go to see my worker, my doctor, my pharmacist for methadone, and my friends”.

Engagement and enjoyment

Participants highlighted that when on the higher end of the spectrum of function, they participated in activities for their own engagement and enjoyment including “being mentally active” and “doing things you like to do.” Examples included hobbies, sports or “learning, not even specifically from schooling but just from like other people.”

Social connection

Healthy relationships

Participants described that to have high function, you “gotta find the right people.” Low function was depicted as “inflicting unfairness towards yourself that impacts others around you,” while high function entails “feeling connected to others.” Participants described that functional gains involved being “away from toxic people” or “people who want to hurt you,” highlighting the importance of healthy relationships.

Social norms

Participants indicated that when they are functioning well, they “behave in a socially acceptable manner,” but during periods of low function, “social cues and behaviours” are a struggle. Participants also described the importance of “fitting in” and reaching “societal productivity standards”.

Communication

Several participants noted that function means to “communicate clearly.” Participants also noted that higher function necessitates “taking action and engaging with others”, as well as “the ability to resolve conflict”.

Support networks

Participants described “reaching out” as key to functional gains. Lower states of function involve being “isolated” or feeling “no one they share their feelings with is there to actually help.” Participants also described “not being heard” by healthcare workers during periods of low function but having “people who are there to sincerely help you,” when function highly.

Item bank development (Phase 2)

Based on Phase 1, our team co-developed 97 items with our youth of researchers including the youth peer research and four additional youth researchers (n = 4). Based on the conceptual model, the item set comprised of items from basic needs (n = 50), roles and responsibilities (n = 30), and social connections (n = 17). Based on a preliminary internal review, our team revised 15 items for clarity, and eliminated 13 for repetition, which resulted 84 (basic needs n = 37, roles and responsibly n = 30, social connections (n = 17). We made a choice to include several items for each category to provide a variety of options to participants in phase 3 to consider and choose.

Cognitive debriefing (Phase 3)

Demographics

Participants were aged 20–24 and identified as men (n = 8), women (n = 3), female and non-binary (n = 1), with a variety of ethnic backgrounds (see Table 1). Nine of the participants had high school diplomas and, of these, three had attended university or another form of education. Participants had a range of mental health diagnoses and seven participants were homeless or precariously housed at the time of the study. The breakdown of other participant characteristics are in Table 1.

Item refinement

Following the cognitive debriefing focus groups, we retained 31 items, eliminated 38 (for being not clear, not relevant to function, or lame), revised 15 (for clarity and lameness) and added 4 new ones. Table 2 describes the qualitative criteria considered for item removal or modification. After this phase, 50 items were deemed ready for next phases in the PROM development process: experts by experience review (including young adults accessing services and health providers) and psychometric testing (see Additional file 2: Table S2 for item list). All items were mapped back to the conceptual model from phase 1 (see Fig. 3) including basic needs (n = 26), roles and responsibilities (n = 16), and social connections (n = 8). Participants also noted in this phase that instructions were clear and there was value in having a response scale that had both a numerical options (e.g., 0, 1, 2, 3, 4) and associated descriptors with each number (e.g., none of the time, some of the time, half of the time, most of the time, all of the time). They also noted the value of “time” as descriptors, as it is something most young people have in common and can understand.