http://informahealthcare.com/jmh ISSN: 0963-8237 (print), 1360-0567 (electronic) J Ment Health, 2015; 24(2): 111–119 ! 2015 Shadowfax Publishing and Informa UK Limited. DOI: 10.3109/09638237.2015.1019052
REVIEW ARTICLE
Postsecondary study and mental ill-health: a meta-synthesis of qualitative research exploring students’ lived experiences Priscilla Ennals, Ellie Fossey, and Linsey Howie
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Department of Occupational Therapy, School of Allied Health, La Trobe University, Melbourne, Bundoora, Australia
Abstract
Keywords
Background: The postsecondary educational experiences of students living with mental health issues are not well understood. Existing studies are generally qualitative, small and contextspecific in nature, and individually have limited influence on policy and practice. Aims: To identify and synthesise the findings of qualitative studies exploring student views of studying while living with mental ill-health. Method: A systematic search of six electronic databases including CINAHL, ERIC, PsycINFO and Medline up to March 2013 was conducted. Findings were extracted from included studies and combined using qualitative meta-synthesis to identify core processes. Findings: The search identified 16 studies from five countries, with a total of 231 participants. Meta-synthesis of the findings revealed three common core processes: (1) knowing oneself and managing one’s mental illness, (2) negotiating the social space, and (3) doing the academic work required for successful postsecondary participation. Conclusion: Beyond the learning processes that underpin studying, these findings suggest knowing oneself and negotiating social spaces of educational settings are key processes for students living with mental ill-health seeking to survive and thrive in postsecondary education. With increased awareness of these processes, students and policy makers may conceive new ways to optimise student experiences of postsecondary study.
Lived experience, mental illness, meta-synthesis, postsecondary study, qualitative, students
Introduction Mental ill-health contributes to education and career disruptions or ruptures for many people (Waghorn et al., 2011). Participating in postsecondary study, or aspiring to do so, facilitates pursuit of employment goals, personal development and social inclusion (Ennals et al., 2014). Evidence indicates increasing numbers of people with mental ill-health are studying (Eisenberg et al., 2013; Storrie et al., 2010) but high drop-out rates are also suggested (Hartley, 2010). Meanwhile, postsecondary institutions and administrators are balancing rights to participation, with maintenance of standards and management of risk, in light of suicides and college shootings in the USA (Gordon & Keiser, 2000; Shuchman, 2007). In many countries, shifts in legislation, policies and practices increasingly promote inclusive postsecondary education (Collins & Mowbray, 2005) in line with a more hopeful discourse around mental illness (Borg & Davidson, 2008). Yet, learning-related challenges are frequently situated within individuals, focusing attention on how symptoms of mental illness impact studying and learning, whereas social, cultural and emotional factors at play in postsecondary education also Correspondence: Priscilla Ennals, Department of Occupational Therapy, Faculty of Health Sciences, School of Allied Health, La Trobe University, Melbourne, Bundoora 3086, Australia. Tel: +61 394795676. Fax: +61 394795737. E-mail: [email protected]
History Received 16 September 2014 Revised 16 December 2014 Accepted 2 February 2015 Published online 14 April 2015
need to be recognised (Tomlinson, 2013). So, while inclusive policies and practices are well intended, a more nuanced understanding of the personal, social and structural influences on student experiences is required to address the needs of students experiencing mental ill-health. Qualitative studies across three decades have explored postsecondary students’ experiences of studying and mental ill-health. Despite this lived experience knowledge having the potential to highlight relevant issues (Davidson et al., 2008), these mostly small-scale, context-specific studies individually have limited influence on policymakers and practitioners. A qualitative meta-synthesis approach was chosen as a means to synthesise the available qualitative research with the aim of generating insights applicable to policy and practice in postsecondary education. This meta-synthesis addresses the question: What is the experience of postsecondary study for students with mental ill-health?
Method A meta-synthesis employs qualitative methods to aggregate and synthesise findings from a number of qualitative studies to achieve a new or deeper understanding of the studied phenomenon. Meta-synthesis involves the ‘‘synthesist’s interpretation of the interpretations of primary data by the original authors’’ (Zimmer, 2006, p. 312), producing new representations that both embody and extract the intent of the original
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findings. This allows broader policy and practice implications to be drawn than those which are possible from individual studies (Thomas & Harden, 2008). Meta-synthesis, as a method, has been championed in health research to foreground lived experience perspectives and strengthen the consumer voice in evidence-based practice (Thorne, 2009). Yet, meta-synthesis also necessarily involves the interpretations of findings at a distance from the lived lives of original participants (Sandelowski, 2006). Therefore, critical reading to attend to the differences in research focus, theoretical stance and methodology between studies, and a detailed account that illuminate the meta-synthesist’s interpretive process, are advocated as methods to counter the potential for representational concerns (Sandelowski, 2006). The approach used in this article drew predominantly from the method described by Gewurtz et al. (2008), a four-step process to answer a clear research question involving: (1) systematic search, (2) quality assessment, (3) data extraction and synthesis, and (4) the generation of second order categories through a synthesis of findings. The search and inclusion process are illustrated in Figure 1. First, a systematic search of six databases was conducted using four key search areas and related search terms: student, mental illness, experience and postsecondary education. Limits imposed included English language, peer reviewed, and scholarly journals from 1993 to March 2013. The following inclusion criteria were applied: (1) studies included at least some qualitative component; (2) participant recruitment methods were reported; (3) study participants were adults who reported mental ill-health and students in university, college, or other postsecondary vocational educational settings. Studies were excluded if: (1) they focused
Figure 1. Overview of literature search and inclusion.
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primarily on learning disability, autism spectrum disorders, or dyslexia; (2) participants were predominantly students with disabilities, of whom only a small proportion identified mental ill-health; (3) reports lacked qualitative data. In addition, a hand search of key journals and key authors was conducted, to which the above criteria were also applied. Potentially relevant papers were read in full to check for conceptual congruence and that the qualitative findings clearly addressed the research question guiding this metasynthesis, resulting in inclusion of 16 studies. These 16 studies were reviewed for quality. Despite variability in the quality of reports, all were included since all investigated student views of postsecondary studying while experiencing mental ill-health. The studies employed varying research methodologies, albeit that most were not described in detail. Likewise, descriptions of the data analysis were generally minimal, limiting the understanding of how the authors conducted their analyses and the overall trustworthiness of their findings (Fossey et al., 2002). The higher order author-developed themes from each study were used as the primary data in this meta-synthesis, supported by original verbatim data presented in the reports. A constant comparative method was used to synthesise the data and identify key themes across the studies. Key themes were extracted from individual studies. Primary data were coded and compared by the first author, generating nine categories. Relationships and overlap between the categories were noted. Categories were discussed by the three authors on multiple occasions, with further sifting, sorting and comparison within, and between categories, to identify the processes underpinning the experience of studying while living with mental illness. Table 1 illustrates the analytic steps involved
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Table 1. Example illustrating the data extraction and synthesis process of one identified sub-process: efforts to belong. Data extraction and synthesis process
Example of synthesis involved in construction of the sub-process of efforts to belong
Findings extracted from studies
Building self-esteem and social confidence Social nature of postsecondary education Remaining isolated Making connections Finding friends Lacking social confidence and connection Loneliness Having choices (or not) about social support/connection Fitting in Fitting in exists along a continuum that can change (or not) over time: being isolated, tolerating social demands, fitting in, belonging socially/having friends. Students engage in a range of activities and efforts to belong, and to cope with social demands of studying Efforts to belong Negotiating the social space
Category Category summary
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Sub-process Process
in the generation of one sub-process. As a result, three key processes and associated sub-processes were identified. The first author then checked that the generated processes were a good fit for all the included studies, resulting in minor adjustments.
supported a sense of capability, while experiencing mental illhealth and stresses within and beyond the student role tested this capability and demanded changes in coping strategies.
Findings
Belief in capability
The sixteen studies were from five countries: USA (3), Canada (6), Australia (2), UK (4) and South Korea (1). The studies involved 231 participants in total, with study sample sizes varying from 3 to 54. Half of the studies had samples of 5–10 participants, consistent with in-depth qualitative research. The larger studies tend to use different methods of data collection, for example, online surveys that included a qualitative component. Participants were aged 18–65 years. Self-reported diagnosis was recorded in 12 of the 16 studies and, while some students reported multiple diagnoses, the available aggregated demographic data shows a spread of high and low prevalence disorders: depression (85), psychotic disorders (including schizophrenia, schizoaffective disorder) (64), bipolar disorder (17), anxiety disorders (44) and personality disorders (3). The key methodological features and findings were extracted from each article and are presented in Table 2. The synthesised findings are then presented with illustrative quotes from the included research. Three main processes shape the experience of being a postsecondary student living with mental ill-health: (a) Knowing and managing oneself and one’s illness, (b) Negotiating the social space, and (c) Doing the academic work. The three processes and their subthemes are illustrated in Figure 2. Each process is discussed, and the inter-relationships between them are highlighted. Studies are identified through the numbers bracketed in text, referring to the study number in Table 2.
Being a student provided opportunities to demonstrate capability, facilitating growth in confidence as students engaged in study and received feedback on their performance and effort (Isenwater et al., 2002; Sung & Puskar, 2006; Weiner, 1996; Weiner & Wiener, 1996). This allowed hope for a positive future to grow, as students persisted with study, or tried again following an unsuccessful attempt (Isenwater et al., 2002; Knis-Matthews et al., 2007; Megivern et al., 2003; Sung & Puskar, 2006; Weiner & Wiener, 1997; Zafran et al., 2012). Studying and succeeding at study confirmed to students that they were ‘‘capable of doing university work’’ (Weiner & Wiener, 1997, p. 90).
Knowing and managing oneself and one’s illness The experience of postsecondary study while living with mental ill-health requires knowing, understanding, and managing one’s self and illness. Students reported entering postsecondary settings with some degree of understanding and skill in managing their mental health, or experiencing illhealth for the first time during their studies. Being a student
‘‘What am I capable of?’’
Capability tested Symptom impacts were real and challenging, interfering directly with study participation academically and socially. These impacts also fluctuated, as could students’ own awareness of them. Students described challenges with symptoms, such as concentration, memory, low mood and motivation, anxiety, delusional ideas and auditory hallucinations (Demery et al., 2012; Knis-Mathews et al., 2007; Martin & Oswin, 2010; Megivern et al., 2003; Mullins & Preyde, 2013; Quinn et al., 2009; Weiner, 1999; Weiner & Wiener, 1996). However, equally challenging and disabling for some students were related consequences, such as the loss of social skills and confidence (Weiner & Wiener, 1997; Weiner, 1999; Megivern et al., 2003; Quinn et al., 2009), medication effects (Weiner & Wiener, 1996; Megivern et al., 2003; Knis-Matthews et al., 2007; Martin & Oswin, 2010), financial stress (Megivern et al., 2003), and fear of relapse (Weiner & Wiener, 1996; Megivern et al., 2003; Venville, 2010; Mullins & Preyde, 2013). Mental ill-health challenged students’ sense of themselves: the self being experienced as unpredictable, unreliable and sometimes unlikeable (Venville, 2010; Demery et al., 2012; Mullins & Preyde, 2013).
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Table 2. Key methodological features and findings from reviewed studies. Citation
Purpose
Design and location
Participants
Findings – overall themes
1
Dougherty et al. (1996)
To understand student experience of clubhousebased mobile supported education (SEd)
Qualitative. Focus groups CT, USA.
26 (17 M, 9 F); 26–40 years. Current or former SEd students; 46% with prior college experience. Prior hospitalisations.
2
Weiner (1996)a
To understand perceived role of family for students with depression
Exploratory, grounded theory. Semi-structured interview. Canada.
3 (1 M, 2 F); 22, 24, 39 years. Positive family relationships
3
Weiner & Wiener (1996)a
To understand concerns and required supports of students with psychiatric disabilities
Qualitative component, mixed methods study. Questionnaire and interview. SEd program, Canadian University
24 (11 M, 13 F); 20–49 years. Undergraduates (21), postgraduates (3).
4
Weiner & Wiener (1997)a
To understand factors involved in withdrawing from study
Qualitative. In-depth interview. Canadian University
Eight undergraduate students, who had withdrawn from course.
5
Weiner (1999)a
To explore meaning of university for people living with serious mental illness
Grounded theory. Interview. University counselling department, Canada
8 undergraduate students using university counselling service. 6/8 had prior hospitalisations; 7/8 on medication
6
Isenwater et al. (2002)
To examine participation in College Link program (SEd) for people with long-term mental health needs.
Mixed methods evaluation. Semi-structured interviews. Socioeconomically disadvantaged area of London, UK
6 (4 M, 2 F) Students who completed 6 months of program randomly selected from larger evaluation (n ¼ 16)
7
Megivern et al. (2003)
To identify the higher education barriers and needs of SEd participants
Descriptive, quantitative study with summarised qualitative responses. Semi-structured interviews. Urban setting, USA
35 (15 M, 20 F); mean age 35.6 years. 80% with prior college experience; mental illness onset before first college enrollment (50%).
(1) Disclosure: the dilemma of revealing mental illness history. Full, modified, or no disclosure. (2) Expectations: what students wanted to accomplish (3) Support givers and supports valued. (1) The university experience – stressors (2) Importance of family understanding of the illness experience (3) Mental health system helped explain illness to families. (4) Family acceptance mattered more than solutions. (1) Symptom-related problems; (2) Low self-esteem; (3) Trust comes slowly, inhibiting relationships and help-seeking (4) Stigma impacts willingness to disclose; (5) High stress levels Influences on withdrawal: (1) Stage of illness; (2) Time of withdrawal; (3) Academic and university stressors; (4) Social and emotional factors; (5) Helpful supports delayed withdrawal; (6) Decision to return – illness acceptance and belief in capacity facilitated return for 6/8 students. Education described as a continuum, from a ‘‘means’’ to an ‘‘end in itself’’. Demands of university at times exacerbated illness symptoms; some students negotiated fluctuations by varying their rate of study. Perceived changes: (1) Enhanced self-esteem, confidence and motivation; (2) increased relationships/social skills; (3) increased cognitive skills; (4) course participation a step towards independence; (5) Experiencing mutual support and overcoming stigma. Mental illness could disrupt studying or cause no interference. Social isolation, conflict or need for increased support, were impacts. Reasons for leaving college: symptoms, academic challenge, and competing life circumstances. 63% returned to college 3 or more times, 23% more than 5 times. (continued )
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Table 2. Continued Citation
Purpose
Design and location
Participants
Findings – overall themes
8
Tinklin et al. (2005).
To understand the experience of students with mental health problems.
Case study approach. In-depth interview 3 universities (2 English; 1 Scottish), UK
5(2 M, 3 F) Recruited from larger study involving disabled students.
9
Sung & Puskar (2006).
To explore the experiences of students diagnosed with schizophrenia returning to college.
21 (13 M, 8); Attended college in past year; mean illness duration 4.5 years; all taking/had taken antipsychotic medication.
10
Knis-Matthews et al. (2007)
To understand postsecondary education experiences of students with mental illness.
Qualitative. Semi-structured interview; qualitative content analysis. 2 university hospitals, South Korea Phenomenology. In-depth interview. SEd program, NJ
11
Quinn et al. (2009)
To understand issues around disclosure and help-seeking for students with mental health issues.
Qualitative. Individual interviews, focus groups and contributions to online site. Scottish university, UK
12 people interviewed; up to 60 participating in the interactive web space.
12
Martin & Oswin (2010)
To understand experiences of students with mental ill-health.
Mixed methods. Anonymous online survey. 1 school within a university, Australia
54 (3.6% response to online survey); Students selfidentified as having mental ill-health
13
Venville (2010)
To understand experiences of learning for students with mental illness in vocational education courses
Qualitative interpretive, influenced by phenomenology. Semi-structured interviews. Regional vocational education and training institute, Australia.
5 (4 M, 1 F); Undisclosed diagnosed mental illness Non-probability purposive sampling; advertising on campus.
14
Demery et al. (2012)
To understand experiences and supports used by higher education students with mood disorders
Qualitative. Semi-structured interviews. 5 universities in Wales, UK.
5 (2 M, 3 F) Students currently studying; purposive, snowball recruitment through student advisors.
15
Zafran et al. (2012)
To understand return-to-study experiences for people with first-episode psychosis
Phenomenology. Semi-structured interviews. Clinical early intervention service, Canada
16
Mullins & Preyde (2013)
To understand university experiences of students with invisible disability (dyslexia/mental illness)
Phenomenology. Semi-structured interviews; interpretive phenomenological analysis. Canada.
5 (4 M, 1 F); 20-25 years 4/5 currently studying. Psychosis; all living with/ supported by family. Purposive sampling 10 (10 F) Self-reported mental health disorder (n ¼ 3); convenience sample recruited through advertising posters.
(1) Stigma and alienation; (2) Higher education culture non-accepting of difference; (3) Academic demands and inflexible; (4) Staff lack awareness Negative experiences most frequent: family conflict, loneliness/withdrawal, loss of motivation, loss of interest, powerlessness, and denial/despair. (1) Education provided purpose/route to other life roles; (2) mental illness challenged consistency for study; (3) support systems and strategies contributed to success; (4) testing readiness to be a student again. (1) Reluctance to disclose and disappointment following disclosure. (2) Reluctance or confusion in help-seeking; (3) Flexible/practical supports most helpful. Failure to seek help earlier frequently regretted. (1) Reluctance to disclose – 34/54 did not disclose. Of those who disclosed, 18/20 reported positive experience; (2) Mental health issues had negative impacts on capacity to study; (3) Assistance usually helpful Mental illness created fallible sense of self that could disrupt learning. (1) Institute provided a respectful adult environment; (2) Controlled disclosure; (3) Hope for the future, but lowered expectations. (1)Social and family support helped negotiate university demands; friendships challenging to establish; (2) Powerful symptoms of mood disorders impacted study negatively; (3) Students experienced stigma. (1) Need to be ready to return to study. (2) Maturity: coping involved growing up and knowing self. (3) Studying provides hope. (1) The nature of the disability fluctuated over time; (2) University environment was accepting. Accommodations used; (3) Social and organisational barriers. Students considered if and when to disclose.
4 (2 M, 2 F); Attending classes at postsecondary education institutions.
M, male; F, female. a Unclear whether the same participants are represented in more than one of these four studies by the same authors.
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Figure 2. The experience of being a postsecondary student with mental ill-health: three core processes.
Some students described a downward spiral of getting behind in their work, getting stressed, feeling more anxious, losing confidence, and then being less able to problem solve or do the work to catch up (Isenwater et al., 2002; Tinklin et al., 2005; Quinn et al., 2009). ‘‘I wasn’t able to function then. The depression had taken quite a stranglehold. I felt different. I couldn’t get up and face the world. Having the work outstanding was causing me anxiety and with that, I wasn’t going to get any better and out of this pit’’ (Weiner & Wiener, 1997, p. 89). For some, an increased sensitivity to negative feedback and failure fed into loss of hope (Weiner & Wiener, 1996; Sung & Puskar, 2006; Martin & Oswin, 2010; Demery et al., 2012). Students managed this differently: some deciding that study was no longer an option, or at least not at that time (Weiner, 1999; Zafran et al., 2012). Some participants had moved through periods of failure and lost hope, to feel more hopeful about study, or were studying again (Weiner & Wiener, 1997; Megivern et al., 2003; Zafran et al., 2012). Adjusting and learning strategies for coping Many participants described developing effective coping strategies. These included learning to match study demands to their available capacity, for example, by managing their course load or personal expectations about their effort, attendance, or grades (Weiner, 1999; Megivern et al., 2003). Others accepted supports or medications could enhance their coping (Weiner, 1999; Megivern et al., 2003; Mullins & Preyde, 2013). Finding this balance required students to know themselves and know ‘‘how to deal with stresses so they won’t take you by surprise’’ (Weiner, 1999, p. 408). Hence, students were constantly learning about themselves, their ill-health and how it impacted the student experience, and accepted each in varying degrees across time (Weiner & Wiener, 1997; Weiner, 1999; Megivern et al., 2003). Negotiating the social space Postsecondary study is typically a social occupation. Social struggles, perhaps shared by many postsecondary students, include tolerating social spaces with large numbers of people;
fitting in; finding a social network and friends; and liaising with academic and professional staff. For students living with mental ill-health, a range of additional social demands and choices had to be negotiated in efforts to belong, in deciding what to reveal of themselves, in disclosing, and in seeking support. Efforts to belong While postsecondary campuses are social settings, belonging requires: (a) finding people who share a common interest to connect with; and (b) having the confidence to establish and maintain social connections. A sense of social belonging may happen quickly as students encounter friendly peers (Dougherty et al., 1996; Isenwater et al., 2002; Zafran et al., 2012). For example, one student quickly felt ‘‘part of the college crowd’’ (Dougherty et al., 1996, p. 65), whereas other students found it took more time to build social skills and confidence (Weiner & Wiener, 1996; Weiner, 1999; Isenwater et al., 2002; Tinklin et al., 2005; Demery et al., 2012). Postsecondary study was a more solitary or isolating experience for others, with students describing a spectrum of social challenges from awkwardness and self-consciousness, to increased social sensitivity, and social phobia (Dougherty et al., 1996; Weiner & Wiener, 1997; Weiner, 1999; Megivern et al., 2003; Tinklin et al., 2005; Sung & Puskar, 2006; Zafran et al., 2012). For some students, social challenges persisted throughout their enrollment, an on-going ordeal faced day-today. This student sums up her desolate experience: ‘‘I was aloof the whole time . . . I just went to college to my class, came out and that was that. No one noticed me . . . I never struck up a conversation with anybody’’ (Dougherty et al., 1996, p. 64).
Deciding what to reveal In addition to the social demands of postsecondary education, students described need to negotiate which aspects of themselves, their ill-health or situation they were going to share; and to constantly weigh the benefits and risks of sharing (Dougherty et al., 1996; Weiner, 1999; Tinklin et al., 2005; Knis-Matthews et al., 2007; Quinn et al., 2009; Martin & Oswin, 2010).
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Their caution resulted from feeling different to other students, and from their lived experience of being treated differently by others (Dougherty et al., 1996; Weiner & Wiener, 1996; Weiner, 1999; Megivern et al., 2003; Tinklin et al., 2005; Martin & Oswin, 2010; Mullins & Preyde, 2013). They desired to be seen and treated as people, rather than suffering interactions based on the stigmatising attitudes or diagnostic interpretations of others (Dougherty et al., 1996; Weiner, 1999; Tinklin et al., 2005; Martin & Oswin, 2010). Participants in several studies expressed a clear preference for maintaining control over revealing personal information (Dougherty et al., 1996; Weiner & Wiener, 1996; Quinn et al., 2009; Venville, 2010; Mullins & Preyde, 2013). Yet, some students also described how symptom-related behaviours gave them away, and how others stepped in to manage the situation (Demery et al., 2012). Choices about disclosure Disclosure decisions changed over time and were weighed heavily by students. Those, who felt well on commencing study, anticipated remaining well and not requiring adjustments (Quinn et al., 2009; Venville, 2010). Others became so unwell that they were unable to disclose on their own terms, or to receive timely and helpful supports or accommodations (Weiner & Wiener, 1997; Demery et al., 2012). Not disclosing was also an active choice related to feeling ‘‘a bit more normal’’ (Mullins & Preyde, 2013, p. 154), and in control of one’s life (Dougherty et al., 1996; Quinn et al., 2009; Venville, 2010). ‘‘I wouldn’t tell the teacher anything. I would just sit there like I was just as normal as anybody else.’’ (Dougherty et al., 1996, p. 63) Some students also described disclosure as taking responsibility for their own needs and rights, accessing accommodations, and challenging stigma through openness (KnisMatthews et al., 2007; Venville, 2010; Demery et al., 2012), while others reported fearing and experiencing, the negative consequences of disclosure: stigma, discrimination, and being treated differently (Dougherty et al., 1996; Weiner & Wiener, 1996; Weiner, 1999; Megivern et al., 2003; Tinklin et al., 2005; Martin & Oswin, 2010; Venville, 2010; Demery et al., 2012). Supports and their impact Support from people on and off campus made major contributions to students considering, commencing, sustaining, and successfully completing their studies, including professional (academics, on-campus counselling, disability support staff, university mental health advisors or mental health professionals) and natural supports (family, friends, peers). Some students described examples of very effective professional supports delivered through accessible and wellstructured service systems (Dougherty et al., 1996; KnisMatthews et al., 2007; Venville, 2010). Professional supports such as counselling services were usually seen as helpful (Dougherty et al., 1996; Weiner & Wiener, 1997; KnisMatthews et al., 2007; Demery et al., 2012), though not always (Demery et al., 2012).
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Doing the academic work Doing the academic work as a student involved connecting with a student identity, and fulfilling the tasks expected. These provided a role and structure during a student’s enrollment and required not only their persistence over an extended period, but also coping with the fluctuating demands of student life. Being a student and learning Being a postsecondary student involves doing the academic work. Most studies referred to students valuing and enjoying the academic work (Weiner & Wiener, 1997; Sung & Puskar, 2006; Knis-Matthews et al., 2007). Some participants identified strongly with studying (Dougherty et al., 1996; Weiner & Wiener, 1996; Weiner, 1999; Isenwater et al., 2002; Knis-Matthews et al., 2007; Zafran et al., 2012) as a role of recognised value: ‘‘I can say I’m a student and not a client at a mental health program’’, (Knis-Matthews et al., 2007, p.110) in comparison to being a patient (Weiner & Wiener, 1996; Weiner, 1999; Knis-Matthews et al., 2007). Further, postsecondary education provided a structure and reason for getting up each day (Weiner, 1999), or a focus that allowed a person to forget other challenges, as highlighted in this student’s reflection: ‘‘It keeps me going. It’s something to look forward to. I may not be alive today if I didn’t have something to look forward to.’’ (Weiner, 1999 p. 406) The academic pressures of student life Students were aware of the ebbs and flows of academic pressures and how these interacted with general life stressors, illness symptoms and their sense of coping (Tinklin et al., 2005; Mullins & Preyde, 2013). Academic assessment was a noted time of increased stress, managed more or less well by students (Weiner & Wiener, 1996; Tinklin et al., 2005; Sung & Puskar, 2006; Demery et al., 2012). Coping was sometimes a juggling act that could result in students struggling, failing or dropping-out (Weiner & Wiener, 1997; Tinklin et al., 2005; Demery et al., 2012; Demery et al., 2012; Fossey et al., 2002; Korsbek, 2013). Alternatively, students pushed through challenging times by managing their course load or accepting additional supports (Weiner, 1999; Tinklin et al., 2005). Dealing with the pressures of student life was described as a learning process (Demery et al., 2012). The learning for some students was that study was not a good fit for them (Weiner, 1999; Venville, 2010; Zafran et al., 2012). However, others described learning through disappointing experiences until they found a good-fit between their interests, capacities, the demands of the student role and available supports. For example, in the Megivern et al.’s (2003) study, two thirds of the 35 participants reported enrolling, then withdrawing or failing at least three times, yet they were willing to try again.
Discussion The synthesised findings from 16 qualitative studies of student perspectives provide insight into the experience of
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studying while living with mental ill-health. This metasynthesis highlights many commonalities across five countries in the experience of postsecondary study among students who describe varying mental ill-health diagnoses and stages of recovery. Successful participation in postsecondary study for these students demanded active engagement with three complex and intricately related processes: (1) knowing oneself and managing one’s illness, (2) negotiating the social space and (3) doing the academic work. Being a student is a socially valued role and provides a context in which students can learn about themselves, their illness, their academic skills and environments. In postsecondary study, students test themselves through negotiating the social spaces of educational settings and doing the academic work. In turn, students construct their understandings of themselves, their capabilities and health through engagement in this social environment. Thus, when they have positive experiences in their academic or social spheres, they experience a more capable sense of self and student identity (Kielhofner, 2008). The hope and optimism that results promote taking greater risks to convert dreams to goals. In contrast, symptoms, emotional distress, stress, and stigmatising responses from others may undermine their ability to negotiate the social spaces and do the required academic work of postsecondary study. Yet, many students also describe strategies of resistance and resilience (Peters, 2010), which enable them to study and graduate in spite of experiencing mental ill-health. Students self-managed by adjusting what, when, and the pace at which they study; lowering expectations of achievement; making health-enhancing lifestyle changes; and using natural and professional supports. Some students did this automatically, some learned to self-manage as a process of trial and error, and some were supported to develop selfmanagement skills (a stated role of many supported education programs). Many study findings illustrated that the right social support can mitigate potentially negative impacts of symptoms, stress, and the secondary consequences of mental ill-health. Raising students’ awareness of self-management strategies may reduce the need for trial and error, and negative outcomes such as dropping-out or failing. To enhance student resilience, educational institutions could implement inclusive approaches to foster student selfmanagement around social supports, such as peer mentoring or coaching. Negative experiences of study – failing, withdrawing, or simply struggling – can be internalised as a failed student identity, extinguishing hope for future academic success. Alternatively, reframing these as an imbalance between academic demands and their capacities/resources at a particular time, may facilitate constructive learning about their mental ill-health and capacity to tolerate the demands of student life, thereby strengthening their self-management and resilience (Borg & Davidson, 2008). This may make a return to study possible. If educational institutions raise awareness of this postsecondary study pathway, it may provide a beacon for students, families and educators as they confront periods of struggle or academic failure. Postsecondary study then becomes a process in which success and failure can both be valued.
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Many models of providing support to students experiencing mental ill-health are dependent on students disclosing their conditions (Salzer et al., 2008); however, the need for a critique of the disclosure discourse in mental health has recently been well argued by Korsbek (2013). This metasynthesis highlights that disclosure is complex from a student perspective, with many students carefully considering whether or not to disclose (Tang et al., 2014; Venville et al., 2013). Importantly, students found that disclosure did not guarantee access to effective and timely support. Students often disclosed after realising they were having difficulty with their studies and risked failing. However, as their need for support increased, they frequently experienced an antithetical decrease in their capacity to socially negotiate the supports and accommodations they required or were entitled to, resulting in a downward spiral leading to failure or dropping-out of study. Structural conditions such as disclosure, as the means by which certain students are singled out for supports or adjustments require reconsideration in light of these findings. More research is needed to understand how students debate whether or not to disclose, and strategies they develop over time. With this information, students could be coached around the complexity, costs, and benefits of disclosure, and whether, how and when they disclose for different purposes at different times (Korsbek, 2013). Yet, further development of inclusive approaches to support may counter the need for disclosure. Meta-synthesis is an interpretive approach, so findings and conclusions reached are acknowledged as one construction from the synthesis of previously published accounts (Thorne, 2009). As a result, some misinterpretation of author generated themes may have occurred, however efforts to mitigate this include close, critical reading of the studies, the involvement of three authors in interpretation, and an extended period of thinking, interpretation and reflection during analysis and synthesis (Sandelowski, 2006; Zimmer, 2006). While postsecondary education occurs in culturally specific settings, there was considerable consistency in the findings; however, few studies referred explicitly to their cultural context. Future research should further examine the generated theory, to determine whether the ideas hold across different cultural contexts and student cohorts, as well as the usefulness of the suggested self-management and disclosure-coaching approaches for supporting successful participation in postsecondary education.
Conclusion Findings from this meta-synthesis identified three interconnected processes that students, educators and mental health professionals could usefully consider to facilitate successful student outcomes. Students and aspiring students may benefit from awareness of these three processes, supporting reflection on factors most relevant to them and their specific experience. Understanding the complexity of each process and their relationships with each other can inform policies and practices aiming to optimise student experience and minimise dropout. The framing of postsecondary study as a social, rather than an individual endeavour, may encourage students to actively use social supports and build resilience during
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their studies (Hartley, 2010). There is a role for educational institutions to actively foster peer support, mentoring, and coaching to circumvent students feeling wholly personally responsible for their struggles and success in postsecondary education.
Declaration of interest The authors declare no conflicts of interests. The authors alone are responsible for the content and writing of this article.
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REVIEW ARTICLE
Postsecondary study and mental ill-health: a meta-synthesis of qualitative research exploring students’ lived experiences Priscilla Ennals, Ellie Fossey, and Linsey Howie
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Department of Occupational Therapy, School of Allied Health, La Trobe University, Melbourne, Bundoora, Australia
Abstract
Keywords
Background: The postsecondary educational experiences of students living with mental health issues are not well understood. Existing studies are generally qualitative, small and contextspecific in nature, and individually have limited influence on policy and practice. Aims: To identify and synthesise the findings of qualitative studies exploring student views of studying while living with mental ill-health. Method: A systematic search of six electronic databases including CINAHL, ERIC, PsycINFO and Medline up to March 2013 was conducted. Findings were extracted from included studies and combined using qualitative meta-synthesis to identify core processes. Findings: The search identified 16 studies from five countries, with a total of 231 participants. Meta-synthesis of the findings revealed three common core processes: (1) knowing oneself and managing one’s mental illness, (2) negotiating the social space, and (3) doing the academic work required for successful postsecondary participation. Conclusion: Beyond the learning processes that underpin studying, these findings suggest knowing oneself and negotiating social spaces of educational settings are key processes for students living with mental ill-health seeking to survive and thrive in postsecondary education. With increased awareness of these processes, students and policy makers may conceive new ways to optimise student experiences of postsecondary study.
Lived experience, mental illness, meta-synthesis, postsecondary study, qualitative, students
Introduction Mental ill-health contributes to education and career disruptions or ruptures for many people (Waghorn et al., 2011). Participating in postsecondary study, or aspiring to do so, facilitates pursuit of employment goals, personal development and social inclusion (Ennals et al., 2014). Evidence indicates increasing numbers of people with mental ill-health are studying (Eisenberg et al., 2013; Storrie et al., 2010) but high drop-out rates are also suggested (Hartley, 2010). Meanwhile, postsecondary institutions and administrators are balancing rights to participation, with maintenance of standards and management of risk, in light of suicides and college shootings in the USA (Gordon & Keiser, 2000; Shuchman, 2007). In many countries, shifts in legislation, policies and practices increasingly promote inclusive postsecondary education (Collins & Mowbray, 2005) in line with a more hopeful discourse around mental illness (Borg & Davidson, 2008). Yet, learning-related challenges are frequently situated within individuals, focusing attention on how symptoms of mental illness impact studying and learning, whereas social, cultural and emotional factors at play in postsecondary education also Correspondence: Priscilla Ennals, Department of Occupational Therapy, Faculty of Health Sciences, School of Allied Health, La Trobe University, Melbourne, Bundoora 3086, Australia. Tel: +61 394795676. Fax: +61 394795737. E-mail: [email protected]
History Received 16 September 2014 Revised 16 December 2014 Accepted 2 February 2015 Published online 14 April 2015
need to be recognised (Tomlinson, 2013). So, while inclusive policies and practices are well intended, a more nuanced understanding of the personal, social and structural influences on student experiences is required to address the needs of students experiencing mental ill-health. Qualitative studies across three decades have explored postsecondary students’ experiences of studying and mental ill-health. Despite this lived experience knowledge having the potential to highlight relevant issues (Davidson et al., 2008), these mostly small-scale, context-specific studies individually have limited influence on policymakers and practitioners. A qualitative meta-synthesis approach was chosen as a means to synthesise the available qualitative research with the aim of generating insights applicable to policy and practice in postsecondary education. This meta-synthesis addresses the question: What is the experience of postsecondary study for students with mental ill-health?
Method A meta-synthesis employs qualitative methods to aggregate and synthesise findings from a number of qualitative studies to achieve a new or deeper understanding of the studied phenomenon. Meta-synthesis involves the ‘‘synthesist’s interpretation of the interpretations of primary data by the original authors’’ (Zimmer, 2006, p. 312), producing new representations that both embody and extract the intent of the original
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findings. This allows broader policy and practice implications to be drawn than those which are possible from individual studies (Thomas & Harden, 2008). Meta-synthesis, as a method, has been championed in health research to foreground lived experience perspectives and strengthen the consumer voice in evidence-based practice (Thorne, 2009). Yet, meta-synthesis also necessarily involves the interpretations of findings at a distance from the lived lives of original participants (Sandelowski, 2006). Therefore, critical reading to attend to the differences in research focus, theoretical stance and methodology between studies, and a detailed account that illuminate the meta-synthesist’s interpretive process, are advocated as methods to counter the potential for representational concerns (Sandelowski, 2006). The approach used in this article drew predominantly from the method described by Gewurtz et al. (2008), a four-step process to answer a clear research question involving: (1) systematic search, (2) quality assessment, (3) data extraction and synthesis, and (4) the generation of second order categories through a synthesis of findings. The search and inclusion process are illustrated in Figure 1. First, a systematic search of six databases was conducted using four key search areas and related search terms: student, mental illness, experience and postsecondary education. Limits imposed included English language, peer reviewed, and scholarly journals from 1993 to March 2013. The following inclusion criteria were applied: (1) studies included at least some qualitative component; (2) participant recruitment methods were reported; (3) study participants were adults who reported mental ill-health and students in university, college, or other postsecondary vocational educational settings. Studies were excluded if: (1) they focused
Figure 1. Overview of literature search and inclusion.
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primarily on learning disability, autism spectrum disorders, or dyslexia; (2) participants were predominantly students with disabilities, of whom only a small proportion identified mental ill-health; (3) reports lacked qualitative data. In addition, a hand search of key journals and key authors was conducted, to which the above criteria were also applied. Potentially relevant papers were read in full to check for conceptual congruence and that the qualitative findings clearly addressed the research question guiding this metasynthesis, resulting in inclusion of 16 studies. These 16 studies were reviewed for quality. Despite variability in the quality of reports, all were included since all investigated student views of postsecondary studying while experiencing mental ill-health. The studies employed varying research methodologies, albeit that most were not described in detail. Likewise, descriptions of the data analysis were generally minimal, limiting the understanding of how the authors conducted their analyses and the overall trustworthiness of their findings (Fossey et al., 2002). The higher order author-developed themes from each study were used as the primary data in this meta-synthesis, supported by original verbatim data presented in the reports. A constant comparative method was used to synthesise the data and identify key themes across the studies. Key themes were extracted from individual studies. Primary data were coded and compared by the first author, generating nine categories. Relationships and overlap between the categories were noted. Categories were discussed by the three authors on multiple occasions, with further sifting, sorting and comparison within, and between categories, to identify the processes underpinning the experience of studying while living with mental illness. Table 1 illustrates the analytic steps involved
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Table 1. Example illustrating the data extraction and synthesis process of one identified sub-process: efforts to belong. Data extraction and synthesis process
Example of synthesis involved in construction of the sub-process of efforts to belong
Findings extracted from studies
Building self-esteem and social confidence Social nature of postsecondary education Remaining isolated Making connections Finding friends Lacking social confidence and connection Loneliness Having choices (or not) about social support/connection Fitting in Fitting in exists along a continuum that can change (or not) over time: being isolated, tolerating social demands, fitting in, belonging socially/having friends. Students engage in a range of activities and efforts to belong, and to cope with social demands of studying Efforts to belong Negotiating the social space
Category Category summary
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Sub-process Process
in the generation of one sub-process. As a result, three key processes and associated sub-processes were identified. The first author then checked that the generated processes were a good fit for all the included studies, resulting in minor adjustments.
supported a sense of capability, while experiencing mental illhealth and stresses within and beyond the student role tested this capability and demanded changes in coping strategies.
Findings
Belief in capability
The sixteen studies were from five countries: USA (3), Canada (6), Australia (2), UK (4) and South Korea (1). The studies involved 231 participants in total, with study sample sizes varying from 3 to 54. Half of the studies had samples of 5–10 participants, consistent with in-depth qualitative research. The larger studies tend to use different methods of data collection, for example, online surveys that included a qualitative component. Participants were aged 18–65 years. Self-reported diagnosis was recorded in 12 of the 16 studies and, while some students reported multiple diagnoses, the available aggregated demographic data shows a spread of high and low prevalence disorders: depression (85), psychotic disorders (including schizophrenia, schizoaffective disorder) (64), bipolar disorder (17), anxiety disorders (44) and personality disorders (3). The key methodological features and findings were extracted from each article and are presented in Table 2. The synthesised findings are then presented with illustrative quotes from the included research. Three main processes shape the experience of being a postsecondary student living with mental ill-health: (a) Knowing and managing oneself and one’s illness, (b) Negotiating the social space, and (c) Doing the academic work. The three processes and their subthemes are illustrated in Figure 2. Each process is discussed, and the inter-relationships between them are highlighted. Studies are identified through the numbers bracketed in text, referring to the study number in Table 2.
Being a student provided opportunities to demonstrate capability, facilitating growth in confidence as students engaged in study and received feedback on their performance and effort (Isenwater et al., 2002; Sung & Puskar, 2006; Weiner, 1996; Weiner & Wiener, 1996). This allowed hope for a positive future to grow, as students persisted with study, or tried again following an unsuccessful attempt (Isenwater et al., 2002; Knis-Matthews et al., 2007; Megivern et al., 2003; Sung & Puskar, 2006; Weiner & Wiener, 1997; Zafran et al., 2012). Studying and succeeding at study confirmed to students that they were ‘‘capable of doing university work’’ (Weiner & Wiener, 1997, p. 90).
Knowing and managing oneself and one’s illness The experience of postsecondary study while living with mental ill-health requires knowing, understanding, and managing one’s self and illness. Students reported entering postsecondary settings with some degree of understanding and skill in managing their mental health, or experiencing illhealth for the first time during their studies. Being a student
‘‘What am I capable of?’’
Capability tested Symptom impacts were real and challenging, interfering directly with study participation academically and socially. These impacts also fluctuated, as could students’ own awareness of them. Students described challenges with symptoms, such as concentration, memory, low mood and motivation, anxiety, delusional ideas and auditory hallucinations (Demery et al., 2012; Knis-Mathews et al., 2007; Martin & Oswin, 2010; Megivern et al., 2003; Mullins & Preyde, 2013; Quinn et al., 2009; Weiner, 1999; Weiner & Wiener, 1996). However, equally challenging and disabling for some students were related consequences, such as the loss of social skills and confidence (Weiner & Wiener, 1997; Weiner, 1999; Megivern et al., 2003; Quinn et al., 2009), medication effects (Weiner & Wiener, 1996; Megivern et al., 2003; Knis-Matthews et al., 2007; Martin & Oswin, 2010), financial stress (Megivern et al., 2003), and fear of relapse (Weiner & Wiener, 1996; Megivern et al., 2003; Venville, 2010; Mullins & Preyde, 2013). Mental ill-health challenged students’ sense of themselves: the self being experienced as unpredictable, unreliable and sometimes unlikeable (Venville, 2010; Demery et al., 2012; Mullins & Preyde, 2013).
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Table 2. Key methodological features and findings from reviewed studies. Citation
Purpose
Design and location
Participants
Findings – overall themes
1
Dougherty et al. (1996)
To understand student experience of clubhousebased mobile supported education (SEd)
Qualitative. Focus groups CT, USA.
26 (17 M, 9 F); 26–40 years. Current or former SEd students; 46% with prior college experience. Prior hospitalisations.
2
Weiner (1996)a
To understand perceived role of family for students with depression
Exploratory, grounded theory. Semi-structured interview. Canada.
3 (1 M, 2 F); 22, 24, 39 years. Positive family relationships
3
Weiner & Wiener (1996)a
To understand concerns and required supports of students with psychiatric disabilities
Qualitative component, mixed methods study. Questionnaire and interview. SEd program, Canadian University
24 (11 M, 13 F); 20–49 years. Undergraduates (21), postgraduates (3).
4
Weiner & Wiener (1997)a
To understand factors involved in withdrawing from study
Qualitative. In-depth interview. Canadian University
Eight undergraduate students, who had withdrawn from course.
5
Weiner (1999)a
To explore meaning of university for people living with serious mental illness
Grounded theory. Interview. University counselling department, Canada
8 undergraduate students using university counselling service. 6/8 had prior hospitalisations; 7/8 on medication
6
Isenwater et al. (2002)
To examine participation in College Link program (SEd) for people with long-term mental health needs.
Mixed methods evaluation. Semi-structured interviews. Socioeconomically disadvantaged area of London, UK
6 (4 M, 2 F) Students who completed 6 months of program randomly selected from larger evaluation (n ¼ 16)
7
Megivern et al. (2003)
To identify the higher education barriers and needs of SEd participants
Descriptive, quantitative study with summarised qualitative responses. Semi-structured interviews. Urban setting, USA
35 (15 M, 20 F); mean age 35.6 years. 80% with prior college experience; mental illness onset before first college enrollment (50%).
(1) Disclosure: the dilemma of revealing mental illness history. Full, modified, or no disclosure. (2) Expectations: what students wanted to accomplish (3) Support givers and supports valued. (1) The university experience – stressors (2) Importance of family understanding of the illness experience (3) Mental health system helped explain illness to families. (4) Family acceptance mattered more than solutions. (1) Symptom-related problems; (2) Low self-esteem; (3) Trust comes slowly, inhibiting relationships and help-seeking (4) Stigma impacts willingness to disclose; (5) High stress levels Influences on withdrawal: (1) Stage of illness; (2) Time of withdrawal; (3) Academic and university stressors; (4) Social and emotional factors; (5) Helpful supports delayed withdrawal; (6) Decision to return – illness acceptance and belief in capacity facilitated return for 6/8 students. Education described as a continuum, from a ‘‘means’’ to an ‘‘end in itself’’. Demands of university at times exacerbated illness symptoms; some students negotiated fluctuations by varying their rate of study. Perceived changes: (1) Enhanced self-esteem, confidence and motivation; (2) increased relationships/social skills; (3) increased cognitive skills; (4) course participation a step towards independence; (5) Experiencing mutual support and overcoming stigma. Mental illness could disrupt studying or cause no interference. Social isolation, conflict or need for increased support, were impacts. Reasons for leaving college: symptoms, academic challenge, and competing life circumstances. 63% returned to college 3 or more times, 23% more than 5 times. (continued )
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Table 2. Continued Citation
Purpose
Design and location
Participants
Findings – overall themes
8
Tinklin et al. (2005).
To understand the experience of students with mental health problems.
Case study approach. In-depth interview 3 universities (2 English; 1 Scottish), UK
5(2 M, 3 F) Recruited from larger study involving disabled students.
9
Sung & Puskar (2006).
To explore the experiences of students diagnosed with schizophrenia returning to college.
21 (13 M, 8); Attended college in past year; mean illness duration 4.5 years; all taking/had taken antipsychotic medication.
10
Knis-Matthews et al. (2007)
To understand postsecondary education experiences of students with mental illness.
Qualitative. Semi-structured interview; qualitative content analysis. 2 university hospitals, South Korea Phenomenology. In-depth interview. SEd program, NJ
11
Quinn et al. (2009)
To understand issues around disclosure and help-seeking for students with mental health issues.
Qualitative. Individual interviews, focus groups and contributions to online site. Scottish university, UK
12 people interviewed; up to 60 participating in the interactive web space.
12
Martin & Oswin (2010)
To understand experiences of students with mental ill-health.
Mixed methods. Anonymous online survey. 1 school within a university, Australia
54 (3.6% response to online survey); Students selfidentified as having mental ill-health
13
Venville (2010)
To understand experiences of learning for students with mental illness in vocational education courses
Qualitative interpretive, influenced by phenomenology. Semi-structured interviews. Regional vocational education and training institute, Australia.
5 (4 M, 1 F); Undisclosed diagnosed mental illness Non-probability purposive sampling; advertising on campus.
14
Demery et al. (2012)
To understand experiences and supports used by higher education students with mood disorders
Qualitative. Semi-structured interviews. 5 universities in Wales, UK.
5 (2 M, 3 F) Students currently studying; purposive, snowball recruitment through student advisors.
15
Zafran et al. (2012)
To understand return-to-study experiences for people with first-episode psychosis
Phenomenology. Semi-structured interviews. Clinical early intervention service, Canada
16
Mullins & Preyde (2013)
To understand university experiences of students with invisible disability (dyslexia/mental illness)
Phenomenology. Semi-structured interviews; interpretive phenomenological analysis. Canada.
5 (4 M, 1 F); 20-25 years 4/5 currently studying. Psychosis; all living with/ supported by family. Purposive sampling 10 (10 F) Self-reported mental health disorder (n ¼ 3); convenience sample recruited through advertising posters.
(1) Stigma and alienation; (2) Higher education culture non-accepting of difference; (3) Academic demands and inflexible; (4) Staff lack awareness Negative experiences most frequent: family conflict, loneliness/withdrawal, loss of motivation, loss of interest, powerlessness, and denial/despair. (1) Education provided purpose/route to other life roles; (2) mental illness challenged consistency for study; (3) support systems and strategies contributed to success; (4) testing readiness to be a student again. (1) Reluctance to disclose and disappointment following disclosure. (2) Reluctance or confusion in help-seeking; (3) Flexible/practical supports most helpful. Failure to seek help earlier frequently regretted. (1) Reluctance to disclose – 34/54 did not disclose. Of those who disclosed, 18/20 reported positive experience; (2) Mental health issues had negative impacts on capacity to study; (3) Assistance usually helpful Mental illness created fallible sense of self that could disrupt learning. (1) Institute provided a respectful adult environment; (2) Controlled disclosure; (3) Hope for the future, but lowered expectations. (1)Social and family support helped negotiate university demands; friendships challenging to establish; (2) Powerful symptoms of mood disorders impacted study negatively; (3) Students experienced stigma. (1) Need to be ready to return to study. (2) Maturity: coping involved growing up and knowing self. (3) Studying provides hope. (1) The nature of the disability fluctuated over time; (2) University environment was accepting. Accommodations used; (3) Social and organisational barriers. Students considered if and when to disclose.
4 (2 M, 2 F); Attending classes at postsecondary education institutions.
M, male; F, female. a Unclear whether the same participants are represented in more than one of these four studies by the same authors.
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Figure 2. The experience of being a postsecondary student with mental ill-health: three core processes.
Some students described a downward spiral of getting behind in their work, getting stressed, feeling more anxious, losing confidence, and then being less able to problem solve or do the work to catch up (Isenwater et al., 2002; Tinklin et al., 2005; Quinn et al., 2009). ‘‘I wasn’t able to function then. The depression had taken quite a stranglehold. I felt different. I couldn’t get up and face the world. Having the work outstanding was causing me anxiety and with that, I wasn’t going to get any better and out of this pit’’ (Weiner & Wiener, 1997, p. 89). For some, an increased sensitivity to negative feedback and failure fed into loss of hope (Weiner & Wiener, 1996; Sung & Puskar, 2006; Martin & Oswin, 2010; Demery et al., 2012). Students managed this differently: some deciding that study was no longer an option, or at least not at that time (Weiner, 1999; Zafran et al., 2012). Some participants had moved through periods of failure and lost hope, to feel more hopeful about study, or were studying again (Weiner & Wiener, 1997; Megivern et al., 2003; Zafran et al., 2012). Adjusting and learning strategies for coping Many participants described developing effective coping strategies. These included learning to match study demands to their available capacity, for example, by managing their course load or personal expectations about their effort, attendance, or grades (Weiner, 1999; Megivern et al., 2003). Others accepted supports or medications could enhance their coping (Weiner, 1999; Megivern et al., 2003; Mullins & Preyde, 2013). Finding this balance required students to know themselves and know ‘‘how to deal with stresses so they won’t take you by surprise’’ (Weiner, 1999, p. 408). Hence, students were constantly learning about themselves, their ill-health and how it impacted the student experience, and accepted each in varying degrees across time (Weiner & Wiener, 1997; Weiner, 1999; Megivern et al., 2003). Negotiating the social space Postsecondary study is typically a social occupation. Social struggles, perhaps shared by many postsecondary students, include tolerating social spaces with large numbers of people;
fitting in; finding a social network and friends; and liaising with academic and professional staff. For students living with mental ill-health, a range of additional social demands and choices had to be negotiated in efforts to belong, in deciding what to reveal of themselves, in disclosing, and in seeking support. Efforts to belong While postsecondary campuses are social settings, belonging requires: (a) finding people who share a common interest to connect with; and (b) having the confidence to establish and maintain social connections. A sense of social belonging may happen quickly as students encounter friendly peers (Dougherty et al., 1996; Isenwater et al., 2002; Zafran et al., 2012). For example, one student quickly felt ‘‘part of the college crowd’’ (Dougherty et al., 1996, p. 65), whereas other students found it took more time to build social skills and confidence (Weiner & Wiener, 1996; Weiner, 1999; Isenwater et al., 2002; Tinklin et al., 2005; Demery et al., 2012). Postsecondary study was a more solitary or isolating experience for others, with students describing a spectrum of social challenges from awkwardness and self-consciousness, to increased social sensitivity, and social phobia (Dougherty et al., 1996; Weiner & Wiener, 1997; Weiner, 1999; Megivern et al., 2003; Tinklin et al., 2005; Sung & Puskar, 2006; Zafran et al., 2012). For some students, social challenges persisted throughout their enrollment, an on-going ordeal faced day-today. This student sums up her desolate experience: ‘‘I was aloof the whole time . . . I just went to college to my class, came out and that was that. No one noticed me . . . I never struck up a conversation with anybody’’ (Dougherty et al., 1996, p. 64).
Deciding what to reveal In addition to the social demands of postsecondary education, students described need to negotiate which aspects of themselves, their ill-health or situation they were going to share; and to constantly weigh the benefits and risks of sharing (Dougherty et al., 1996; Weiner, 1999; Tinklin et al., 2005; Knis-Matthews et al., 2007; Quinn et al., 2009; Martin & Oswin, 2010).
Postsecondary study and mental ill-health
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Their caution resulted from feeling different to other students, and from their lived experience of being treated differently by others (Dougherty et al., 1996; Weiner & Wiener, 1996; Weiner, 1999; Megivern et al., 2003; Tinklin et al., 2005; Martin & Oswin, 2010; Mullins & Preyde, 2013). They desired to be seen and treated as people, rather than suffering interactions based on the stigmatising attitudes or diagnostic interpretations of others (Dougherty et al., 1996; Weiner, 1999; Tinklin et al., 2005; Martin & Oswin, 2010). Participants in several studies expressed a clear preference for maintaining control over revealing personal information (Dougherty et al., 1996; Weiner & Wiener, 1996; Quinn et al., 2009; Venville, 2010; Mullins & Preyde, 2013). Yet, some students also described how symptom-related behaviours gave them away, and how others stepped in to manage the situation (Demery et al., 2012). Choices about disclosure Disclosure decisions changed over time and were weighed heavily by students. Those, who felt well on commencing study, anticipated remaining well and not requiring adjustments (Quinn et al., 2009; Venville, 2010). Others became so unwell that they were unable to disclose on their own terms, or to receive timely and helpful supports or accommodations (Weiner & Wiener, 1997; Demery et al., 2012). Not disclosing was also an active choice related to feeling ‘‘a bit more normal’’ (Mullins & Preyde, 2013, p. 154), and in control of one’s life (Dougherty et al., 1996; Quinn et al., 2009; Venville, 2010). ‘‘I wouldn’t tell the teacher anything. I would just sit there like I was just as normal as anybody else.’’ (Dougherty et al., 1996, p. 63) Some students also described disclosure as taking responsibility for their own needs and rights, accessing accommodations, and challenging stigma through openness (KnisMatthews et al., 2007; Venville, 2010; Demery et al., 2012), while others reported fearing and experiencing, the negative consequences of disclosure: stigma, discrimination, and being treated differently (Dougherty et al., 1996; Weiner & Wiener, 1996; Weiner, 1999; Megivern et al., 2003; Tinklin et al., 2005; Martin & Oswin, 2010; Venville, 2010; Demery et al., 2012). Supports and their impact Support from people on and off campus made major contributions to students considering, commencing, sustaining, and successfully completing their studies, including professional (academics, on-campus counselling, disability support staff, university mental health advisors or mental health professionals) and natural supports (family, friends, peers). Some students described examples of very effective professional supports delivered through accessible and wellstructured service systems (Dougherty et al., 1996; KnisMatthews et al., 2007; Venville, 2010). Professional supports such as counselling services were usually seen as helpful (Dougherty et al., 1996; Weiner & Wiener, 1997; KnisMatthews et al., 2007; Demery et al., 2012), though not always (Demery et al., 2012).
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Doing the academic work Doing the academic work as a student involved connecting with a student identity, and fulfilling the tasks expected. These provided a role and structure during a student’s enrollment and required not only their persistence over an extended period, but also coping with the fluctuating demands of student life. Being a student and learning Being a postsecondary student involves doing the academic work. Most studies referred to students valuing and enjoying the academic work (Weiner & Wiener, 1997; Sung & Puskar, 2006; Knis-Matthews et al., 2007). Some participants identified strongly with studying (Dougherty et al., 1996; Weiner & Wiener, 1996; Weiner, 1999; Isenwater et al., 2002; Knis-Matthews et al., 2007; Zafran et al., 2012) as a role of recognised value: ‘‘I can say I’m a student and not a client at a mental health program’’, (Knis-Matthews et al., 2007, p.110) in comparison to being a patient (Weiner & Wiener, 1996; Weiner, 1999; Knis-Matthews et al., 2007). Further, postsecondary education provided a structure and reason for getting up each day (Weiner, 1999), or a focus that allowed a person to forget other challenges, as highlighted in this student’s reflection: ‘‘It keeps me going. It’s something to look forward to. I may not be alive today if I didn’t have something to look forward to.’’ (Weiner, 1999 p. 406) The academic pressures of student life Students were aware of the ebbs and flows of academic pressures and how these interacted with general life stressors, illness symptoms and their sense of coping (Tinklin et al., 2005; Mullins & Preyde, 2013). Academic assessment was a noted time of increased stress, managed more or less well by students (Weiner & Wiener, 1996; Tinklin et al., 2005; Sung & Puskar, 2006; Demery et al., 2012). Coping was sometimes a juggling act that could result in students struggling, failing or dropping-out (Weiner & Wiener, 1997; Tinklin et al., 2005; Demery et al., 2012; Demery et al., 2012; Fossey et al., 2002; Korsbek, 2013). Alternatively, students pushed through challenging times by managing their course load or accepting additional supports (Weiner, 1999; Tinklin et al., 2005). Dealing with the pressures of student life was described as a learning process (Demery et al., 2012). The learning for some students was that study was not a good fit for them (Weiner, 1999; Venville, 2010; Zafran et al., 2012). However, others described learning through disappointing experiences until they found a good-fit between their interests, capacities, the demands of the student role and available supports. For example, in the Megivern et al.’s (2003) study, two thirds of the 35 participants reported enrolling, then withdrawing or failing at least three times, yet they were willing to try again.
Discussion The synthesised findings from 16 qualitative studies of student perspectives provide insight into the experience of
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P. Ennals et al.
studying while living with mental ill-health. This metasynthesis highlights many commonalities across five countries in the experience of postsecondary study among students who describe varying mental ill-health diagnoses and stages of recovery. Successful participation in postsecondary study for these students demanded active engagement with three complex and intricately related processes: (1) knowing oneself and managing one’s illness, (2) negotiating the social space and (3) doing the academic work. Being a student is a socially valued role and provides a context in which students can learn about themselves, their illness, their academic skills and environments. In postsecondary study, students test themselves through negotiating the social spaces of educational settings and doing the academic work. In turn, students construct their understandings of themselves, their capabilities and health through engagement in this social environment. Thus, when they have positive experiences in their academic or social spheres, they experience a more capable sense of self and student identity (Kielhofner, 2008). The hope and optimism that results promote taking greater risks to convert dreams to goals. In contrast, symptoms, emotional distress, stress, and stigmatising responses from others may undermine their ability to negotiate the social spaces and do the required academic work of postsecondary study. Yet, many students also describe strategies of resistance and resilience (Peters, 2010), which enable them to study and graduate in spite of experiencing mental ill-health. Students self-managed by adjusting what, when, and the pace at which they study; lowering expectations of achievement; making health-enhancing lifestyle changes; and using natural and professional supports. Some students did this automatically, some learned to self-manage as a process of trial and error, and some were supported to develop selfmanagement skills (a stated role of many supported education programs). Many study findings illustrated that the right social support can mitigate potentially negative impacts of symptoms, stress, and the secondary consequences of mental ill-health. Raising students’ awareness of self-management strategies may reduce the need for trial and error, and negative outcomes such as dropping-out or failing. To enhance student resilience, educational institutions could implement inclusive approaches to foster student selfmanagement around social supports, such as peer mentoring or coaching. Negative experiences of study – failing, withdrawing, or simply struggling – can be internalised as a failed student identity, extinguishing hope for future academic success. Alternatively, reframing these as an imbalance between academic demands and their capacities/resources at a particular time, may facilitate constructive learning about their mental ill-health and capacity to tolerate the demands of student life, thereby strengthening their self-management and resilience (Borg & Davidson, 2008). This may make a return to study possible. If educational institutions raise awareness of this postsecondary study pathway, it may provide a beacon for students, families and educators as they confront periods of struggle or academic failure. Postsecondary study then becomes a process in which success and failure can both be valued.
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Many models of providing support to students experiencing mental ill-health are dependent on students disclosing their conditions (Salzer et al., 2008); however, the need for a critique of the disclosure discourse in mental health has recently been well argued by Korsbek (2013). This metasynthesis highlights that disclosure is complex from a student perspective, with many students carefully considering whether or not to disclose (Tang et al., 2014; Venville et al., 2013). Importantly, students found that disclosure did not guarantee access to effective and timely support. Students often disclosed after realising they were having difficulty with their studies and risked failing. However, as their need for support increased, they frequently experienced an antithetical decrease in their capacity to socially negotiate the supports and accommodations they required or were entitled to, resulting in a downward spiral leading to failure or dropping-out of study. Structural conditions such as disclosure, as the means by which certain students are singled out for supports or adjustments require reconsideration in light of these findings. More research is needed to understand how students debate whether or not to disclose, and strategies they develop over time. With this information, students could be coached around the complexity, costs, and benefits of disclosure, and whether, how and when they disclose for different purposes at different times (Korsbek, 2013). Yet, further development of inclusive approaches to support may counter the need for disclosure. Meta-synthesis is an interpretive approach, so findings and conclusions reached are acknowledged as one construction from the synthesis of previously published accounts (Thorne, 2009). As a result, some misinterpretation of author generated themes may have occurred, however efforts to mitigate this include close, critical reading of the studies, the involvement of three authors in interpretation, and an extended period of thinking, interpretation and reflection during analysis and synthesis (Sandelowski, 2006; Zimmer, 2006). While postsecondary education occurs in culturally specific settings, there was considerable consistency in the findings; however, few studies referred explicitly to their cultural context. Future research should further examine the generated theory, to determine whether the ideas hold across different cultural contexts and student cohorts, as well as the usefulness of the suggested self-management and disclosure-coaching approaches for supporting successful participation in postsecondary education.
Conclusion Findings from this meta-synthesis identified three interconnected processes that students, educators and mental health professionals could usefully consider to facilitate successful student outcomes. Students and aspiring students may benefit from awareness of these three processes, supporting reflection on factors most relevant to them and their specific experience. Understanding the complexity of each process and their relationships with each other can inform policies and practices aiming to optimise student experience and minimise dropout. The framing of postsecondary study as a social, rather than an individual endeavour, may encourage students to actively use social supports and build resilience during
DOI: 10.3109/09638237.2015.1019052
their studies (Hartley, 2010). There is a role for educational institutions to actively foster peer support, mentoring, and coaching to circumvent students feeling wholly personally responsible for their struggles and success in postsecondary education.
Declaration of interest The authors declare no conflicts of interests. The authors alone are responsible for the content and writing of this article.
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