Valuing whole complex lives: Young adults’ experiences of recovery-related principles in mental healthcare in the United States

2.1 Participants

Participants were 19 young adults between ages 19 and 26 years recruited from the community through social media advertisements, flyers and therapist referrals. Recruitment for these focus groups was part of a larger quasi-experimental intervention study for young adults experiencing depression and/or anxiety. Participants who enrolled in the study, either in the intervention group or the comparison group, were eligible to volunteer for focus groups, which were conducted at baseline prior to the start of any intervention. Eligibility criteria for all participants included: aged 18–26 years, at least moderate depression and/or anxiety as measured by the Patient Health Questionnaire-9 and Generalized Anxiety Disorder-7, no active substance use in need of treatment as assessed by the short form of the Simple Screening Instrument for Substance Abuse (Centre for Substance Abuse Treatment, 1994), and no self-reported suicide attempt in the prior 90 days.

2.2 Procedures

Four focus groups (n = 4, 5, 4, 6) were facilitated by either the first author or a qualified research associate. Focus group methodology was selected for the advantage of eliciting varied, and potentially sensitive, experiences that might only surface through the interaction of participants (Morgan, 2009). Focus groups took place between June and August 2018, prior to the start of the larger intervention study, and lasted approximately 75–90 min. Participants were provided a cover letter for consent and were told that they could leave the focus group at any time, without jeopardising their participation in the larger intervention study. Once all participants gave verbal consent, the audio recording device was turned on. Participants were instructed to avoid using their names, but were assured that transcriptions would be made anonymous regardless.

Participants were asked to describe prior experiences when one or more of these concepts was present or done well, and prior experiences when one or more of these concepts was absent or done poorly. With remaining time left, participants were asked to reflect generally on the best and worst qualities of the professionals and programmes they had engaged with in the past when seeking help.

Snacks and drinks were available to participants at the start of the focus group, and each participant received a $20 gift card to compensate for their time and travel expenses. This study was approved by the Colorado State University Research Integrity and Compliance Review office.

2.3 Data analysis

Audio recordings were professionally transcribed and uploaded into NVivo version 12 for coding and analysis (QSR International, 2018). Deductive thematic analysis was used to identify patterned responses within the six broader recovery-related concepts that guided the focus group discussion (Braun & Clarke, 2006). Two independent coders first read all four focus group transcripts and then coded one transcript by applying the a priori concepts to segments of text. Individual extracts of text may have been coded once or coded multiple times insofar as they were relevant to one or more of the six recovery-related concepts. The two coders and the first author met to examine inter-coder agreement from this initial coding stage and discuss emerging patterns in semantic content found within each of the broader conceptual groupings. All three coders agreed on the development of initial themes, capturing the range of positive and negative experiences described by participants, within each conceptual grouping. The two coders then independently coded the remaining three transcripts, maintaining the flexibility to add emergent themes as they progressed in the coding progress. Finally, the two coders and the first author met again to examine inter-coder agreement, discuss any newly emerging themes, and review and refine the final set of themes with regard to arriving at the most accurate representation of the range of experiences within each recovery-related concept.

3.1 Sample description

Table 1 provides the demographic characteristics for this sample of young adults. Most participants identified as female (78.9%), White (84.2%) and with at least some college education completed (94.7%). Most were employed full time (63.2%) and less than half were current college students (47.4%). In their baseline assessments, participants reported first receiving a mental health diagnosis at a mean age of 16 years (min 12; max 21), most often related to depression or anxiety. In all, 14 participants (73.7%) reported a history of psychotropic medication use, having tried an average 2.5 (SD = 2.03) prescribed medications. The mean age of starting on a psychotropic medication was 17 years (min 11; max 21), with a combined 41 person-years spent on psychiatric medications.

Most participants (78.9%) described accessing therapy or counselling services at some point in their lives. Of those, five reported that their first experience was involuntary or mandatory. Participants also reported seeking help from a psychiatrist or doctor, non-emergency hospital visits, college campus resources, or talking with family, teachers or youth pastors. A few participants (21.1%) described accessing what they considered to be alternative or complementary care services, including brain spotting (i.e. a therapy to access unprocessed trauma through points in a person's visual field), EMDR or acupuncture.

3.2 Listened to and validated

Feeling listened to and validated was the most discussed concept of the six and appeared to be a cornerstone of other concepts, particularly inclusivity, full information and consent, and connectedness. Participants described positive experiences as being able to talk openly to professionals without fear of judgement or paternalistic responses. Participant B4 explained, ‘I think always the best thing is just listening and being able to trust the person…without worrying that they're going to judge you or kind of make a decision for you’. This concept also extended to a felt sense of genuineness from a professional or that they truly ‘want to be there for you’ (B4).

3.3 Inclusivity

The second way young adults elaborated on inclusivity was in terms of having individualised options presented to them. This was contrasted with experiences of professionals offering whatever single tool they seemed to most prefer, which was interpreted as them having ‘an agenda’. Participants specifically described feeling annoyed by continued suggestions from therapists to practice ‘mindfulness’, despite repeated explanations that mindfulness was not working or was not what they needed. Participant A1 explained their experience with this as, ‘oh, mindfulness. They talk about mindfulness so much and I swear I was like, I hate mindfulness. Like, that's not what I need and I just—I don't know like that's been a very big struggle for me…’ Instead, participants valued having individualised options and the quality of adaptability on the part of the professional ‘to think on your feet and be creative or be out of the box’ (B3).

3.4 Full information and consent

On the positive side, young adults reported having trust in professionals who can say ‘I don't know, but I can look into some things and get back to you’ (B3), or who lay out all the options so that they can come to their own informed decision. Participant E4 shared a helpful interaction with their therapist where ‘she just drew it out of me and then gave me advice and laid it all out for me, like a path, paths that I could take. And she didn't say her own opinion, she just laid it out. That just really helped me to see it clearly’.

3.5 Hope and optimism

Feelings of hope and optimism were discussed in the context of grappling with the question, ‘Why do I feel the way I do?’ Some participants shared their sense of confusion around making sense of their distress when their rational minds would tell them that they have nothing to complain about: ‘You start thinking you're crazy for feeling these things. Especially like, I don't know, being a white female… I definitely am constantly like, Why do I feel like I have issues?… I have nothing to complain about’ (A2). Participants acknowledged the impacts of oppression and trauma as legitimate experiences to feel depression and anxiety over. In the absence of direct oppression and trauma, however, there was no apparent reason to live with such negative feelings. This further led to a sense of isolation and hopelessness, as if they had to ‘deal with it myself’ and ‘figure it out’ on their own.

3.6 Connectedness

Connectedness emerged as an important concept that closely hinged on feeling listened to and validated, and extended into a desire for belonging, depth in their interactions with others and understanding mind–body connections. Participants described their most successful experiences with counselling centres and therapeutic groups in terms of the sense of community that was cultivated. Participants described feeling ‘connected to people on a level that you can't just get to every day when they're complete strangers’ (C4).

In their interactions with therapists and doctors, participants experienced the greatest connection when they felt as if they were ‘more than just a client’, which could be demonstrated with small acts, such as the professional offering relevant books or resources based on conversation shared in a prior session. Participants equally discussed negative experiences with therapists or professionals who failed to demonstrate their dedication, as reflected by participant B1, ‘I just felt sometimes, they're there for you in the moment but then they're not… You're just a patient to them and they don't understand. They don't care’.

Connectedness thus emerged as spanning a sense of community and belonging, and further, to an expressed desire for depth, integration and holism from treating professionals.

3.7 Change

Participants discussed change as an elusive concept that can be difficult to notice or track. They noted that tracking change could be a helpful role for therapists and professionals. One participant (C2) explained, ‘… because it's gradual… it is hard to track that (change) yourself. So it's good to see, to have other people see that change and to comment on it’. Participants who had less prior experience with therapy or treatment described having to ‘figure out things on my own’ (A2), which led to questioning their self-efficacy, for example, ‘I don't know if I can change… the anxiety and thoughts that I have on a daily basis, from the moment I wake up until I go to bed’ (B2).

4.1 Limitations

Young adults in these focus groups were homogeneous in their demographic characteristics and are unlikely to represent the experiences and preferences of demographically and socioeconomically diverse young adults. Persons experiencing more extreme states, such as psychosis, are also not represented in this study sample and findings should not be generalised to young adults with more serious mental and emotional distress. Participants in this study were also seeking to enrol in a novel intervention programme and, therefore, might have greater negative prior experiences with conventional mental healthcare than is typical. However, a range of experiences and symptom severity appeared to be represented across participants. For example, a few participants had no prior mental health diagnosis and reported few lifetime interactions with formal mental health services outside of a University counselling centre. Other participants reported multiple diagnoses, inpatient hospitalisations and long histories of medication-taking. Regardless, the experiences of this largely white, female, fairly educated sample of young adults might not generalise to the potentially diverse experiences of persons from marginalised communities. At the same time, young adult participants were eager to share their voices and provided rich data for programme planning purposes.

4.2 Application to programme planning and development

The experiences and voices of young adults should push mental health providers to consider developing programmes that shift focus away from an exclusively medical understanding of distress and towards holistic, educational or relational approaches that value body, mind and authentic social connection. Programmes should emphasise the whole biopsychosocial person and avoid symptom-based solutions, offer multiple options and sustainable strategies for personal growth, and provide non-judgemental space for the process of making meaning out of mental and emotional distress.

More holistic and integrated models can be found in Coordinated Specialty Care and Open Dialogue approaches for first-episode psychosis. Both models use team-based and person-centred approaches to support multiple aspects of a person's life, with Open Dialogue adopting an explicit aim to minimise the use of psychotropic drugs (Seikkula et al., 2006). However, such coordinated and comprehensive support is not often available to young adults with milder forms of psychological distress. Clinicians in routine practice might therefore adopt stepped care approaches and encourage the generation of greater psychosocial options (Murphy, McCarthy, Baer, Zima, & Jellinek, 2014). For example, education around sustainable adjustments to diet, nutrition and exercise could be offered as biological points of intervention for depression and anxiety. Ample research evidence documents the value of diet patterns and nutritional support in mental health (Akkasheh et al., 2016; Jacka et al., 2017; Rucklidge, Kaplan, & Mulder, 2015), and recent research in humans suggests a role for gut microbiota in depression (Valles-Colomer et al., 2019). Exercise for depression has demonstrated efficacy equivalent or superior to pharmacological and psychological interventions in multiple randomised controlled trials (Cooney et al., 2013).

Physical interventions described above coupled with other first-line psychosocial approaches, such as peer support and ‘social prescribing’, might together offer valuable treatment packages for young adults experiencing depression and anxiety. Peer support modalities prioritise principles articulated by young adults to be important, including meaningful connection, authenticity and sustainable growth and healing. Peer-based interventions, such as Hearing Voices Groups and Alternatives to Suicide Groups, are spreading in the United Kingdom, the United States and other countries as an alternative discourse to narrowly focused psychiatric narratives of distress (Dillon & Hornstein, 2013). Intentional Peer Support provides trainings internationally to service users and professionals on how to build partnership, create dialogue and practice ‘the art of connection’. Benefits of peer support modalities have been described as fostering a shared sense of identity, increased self-confidence, social inclusion, resilience and self-agency (Faulkner & Basset, 2010; Seebohm et al., 2013).

In a similar vein to ‘social prescribing’ in the United Kingdom (Chatterjee, Camic, Lockyer, & Thomson, 2017), mental health programmes for young adults might consider supporting self-exploration and social connections as additional first-line approaches. A variety of positive outcomes related to self-esteem, psychosocial competence and maturity, connectedness, positive identity, and life satisfaction appear to be mediated by a process of identity exploration and formation that can be fostered by engagement in self-defining activities (Coatsworth, Palen, Sharp, & Ferrer-Wreder, 2006; Tew et al., 2012). Programmatically, flexible-spending accounts can be applied for activities of young adults’ choosing, such as gym or sports membership, meditation, martial arts, music or art lessons, or outdoor excursions.

Young adults see themselves as interconnected, whole persons and report a desire for treatment options that explore and engage their full and complex lives. When it comes to young adult mental health, at minimum, professionals should listen, validate and facilitate informed choice. In the process of programme development, planners should start with the building blocks of validation, authentic connection and choice, and ask what kind of environment or programming would be most conducive to fostering these values and ways of being. This requires thinking beyond the medical model of distress towards holistic, sustainable self-development approaches.