Lived Experience Of Mental Illness Research Articles

Anthropological perspectives on the trajectory from institutionalisation to community care in Irish psychiatry.

The trajectory of the anthropology of Irish psychiatry, like the trajectory of Irish psychiatry itself, is indelibly shaped by the history of Ireland's mental hospitals. This paper focuses on three works concerning the anthropology of psychiatry in Ireland: Nancy Scheper-Hughes's book, Saints Scholars and Schizophrenics: Mental Illness in Rural Ireland, an anthropological study (1977/2001); Eileen Kane's paper, 'Stereotypes and Irish identity: mental illness as a cultural frame', from Studies: An Irish Quarterly Review (1986) and Michael D'Arcy's conference paper, 'The hospital and the Holy Spirit: psychotic subjectivity and institutional returns in Dublin, Ireland' (2015), based on his PhD dissertation. All three publications explore the relationship between institutional and community psychiatric care in Ireland, concluding with the work of D'Arcy which, like much good anthropology, is rooted in the lived experience of mental illness and combines deep awareness of the past with tolerance of multiple, ostensibly contradictory narratives in the present.

The role of the peer support worker in increasing rural mental health help-seeking.

Mental health peer support workers draw on lived experience to provide benefit to people experiencing mental distress. People living in rural areas are less likely than their urban counterparts to seek professional help for psychological distress. The aim of this study was to explore the perceived value of rural peer support workers as facilitators to rural mental health help-seeking. Data were gathered through a cross-sectional survey distributed by a social media boosted post. A total of 349 "small" rural towns in New South Wales as defined by the Modified Monash Model classification system as MMM5. A total of 765 adult, rural residents completed the survey. Participants were asked to select, from a list of potential facilitators, those which they felt would make mental health help-seeking easier or harder. Study participants felt that a help provider with lived experience of mental illness or distress would make mental health help-seeking easier. Similarly, rural life experience in a help provider was thought to facilitate help-seeking. Participants also believed that flexible and informal meeting settings would make it easier to seek help for mental distress. Engaging rural mental health peer support workers in a flexible/informal setting, as a complement to conventional health service provision, may increase rural help-seeking for mental distress. Increased mental health help-seeking is likely to have a positive impact on instances of serious mental illness.

Mouse to man, a mental health recovery journey.

WHAT IS KNOWN ON THE SUBJECT?: The need for recovery narratives written by people with lived experience of mental illness is widely acknowledged in mental health research. Insights from lived experience narratives can assist nurses to reflect on practice in new ways. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: By describing the lived experience of one man's journey through adolescence crippled by anxiety to become one of the Australia's leading consumer advocates, this paper emphasizes the importance of retaining hope no matter how difficult challenges become. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Flexibility regarding service age limits for young people who experience mental illness is important, particularly if therapeutic relationships have been established. Services should provide longer-term treatment options for youth who experience mental illness. Mental health nurses need to guard against too much focus on getting rid of symptoms. Nursing should seek to develop the whole of a person's life as they move along their recovery journey.

The questions we ask – differences between the peer and allied health workforces

ABSTRACT Background: While there have been increased calls for mental health consumers to be involved in mental health services research, there is limited research exploring the research interests of this group. Aims: To compare the interests in different research topics of a peer workforce (people who are employed to use their lived experience of mental illness and recovery to support others) with those of Allied Health Professionals in a Hospital and Health Service. Method: A survey asking participants to rate their interest in researching various topics was distributed to the peer and allied health workforce. Differences between the two groups were tested with the Kruskal–Wallis test for independent samples. Results: The peer workforce consistently rated their interest in all questions as greater than the Allied Health Workforce with five of the seven questions showing statistically significant differences. The median ratings of interest for four of the seven topics were high for both the peer and allied health. These were primarily items on how to help. The peer workforce also expressed a greater interest in being involved in the research. Conclusions: Our study emphasises the importance of creating opportunities for including the peer workforce in all aspects of the research process.

Expert by Experience Involvement in Mental Health Research: Developing a Wellbeing Brochure for People with Lived Experiences of Mental Illness

This is a process paper that describes the development of a wellbeing brochure, shared between university researchers, a consumer research advocate, and fully informed by people who are living with mental illness (experts by experience). The purpose of this brochure was to provide strategies for maintaining wellbeing for EBEs, after attending a psychosocial intervention. Brochure development was guided by a mixed-methods research design, using a survey and focus group. The findings illustrate five key themes in EBEs strategies for maintaining wellbeing: good sleep hygiene, regular physical activity, maintaining a healthy lifestyle, relaxation techniques and social support. This process paper demonstrates how collaborating with experts by experience represents a valuable approach for developing mental health research and resources.

Attitudes to psychiatry and to mental illness among nursing students: Adaptation and use of two validated instruments in preclinical education.

Stigma towards psychiatry and people with serious mental illness (SMI) is prevalent among healthcare providers and can adversely affect patient care. Internalized stigma among nurses can affect personal self-care and limit help-seeking behaviours. Stigma around mental health nursing can adversely affect recruitment into this already underserved field. This is the first report on the adaptation and use in a nursing student sample of two widely used stigma-related instruments that have been normed among medical students. The attitudes to psychiatry (ATP-30) and the attitudes to mental illness (AMI) instruments proved sensitive to change and can be useful in tracking specific anti-stigma curricular interventions. Interactive and participatory student activities in courses such as ours (that include simulation with standardized patients, clinical placements and patient interaction) need to be complemented by exposure to individuals with lived experience with mental illness in order to address stigmatized views of SMI. Nursing educators and fellow nurses willing to share their own experiences with mental illness-including diagnosis, health-seeking, treatment and recovery-may prove especially powerful and germane during nursing school. Even a strong academic curriculum is not sufficient to change stigmatized perceptions about mental illness, psychiatric care and mental health nursing as a profession. Comparison and potential synergy between ATP-30, AMI and OMS-HC (Opening Minds Scale for Health Care Providers) could prove fruitful in identifying a more comprehensive approach to stigma assessment over time. The addition of validated instruments, such as the Self-Compassion Scale-Short Form (SCS-SF) and the Self-Stigma of Seeking Help (SSOSH), which tap into internalized stigma and into health-seeking behaviours and intervening barriers could prove particularly useful in evaluating innovative interventions for stigma-decreasing initiatives in nursing education. Interactive and participatory didactic offerings need to be complemented by exposure to individuals with lived experience with mental illness and ideally to nursing educators and practicing nurses willing to share their histories of diagnosis, help-seeking, treatment and recovery. Introduction Stigma towards psychiatry and to people with serious mental illness (SMI) is prevalent among healthcare providers and can adversely affect patient care. Such stigmatized views can adversely affect recruitment into the already underserved field of mental health nursing. Aim/question We adapted two stigma-related instruments in a sample of nursing students and examined change in scores after participation in an eight-week preclinical psychiatry curriculum. Our goal was to identify stigma-malleable opportunities that would inform refinements in future iterations of a preclinical psychiatry curriculum in nursing. Method We made minor adaptations to the attitudes to psychiatry (ATP-30) and the attitudes to mental illness (AMI) instruments. We invited first-year nursing students to complete assessments at two time points: before and after completion of an eight-week core course in preclinical psychiatry. Results Seventy-one students completed the assessment at both time points. ATP-30 and three of its eight subscale scores improved by course's endpoint. By contrast, AMI scores did not change. Compared with medical student published norms, nursing students in our sample had higher (less stigmatized) average scores. Discussion The ATP-30 and the AMI can be easily adapted to a nursing student population and may prove useful in tracking specific anti-stigma educational interventions. Implications for practice A general psychiatry course during nursing school is, it and of itself, unlikely to change biased views about SMI and should be enhanced with exposure to, and interaction with individuals with lived experiences of mental illness, ideally by nurse educators and practicing nurses.

Consumer perceptions of community pharmacy-based promotion of mental health and well-being.

With nearly half of all Australians likely to experience a mental illness, increasing community-based mental health promotion is warranted. Community pharmacies are accessible health care destinations that effectively provide a range of public health services. This study explored consumer opinions of mental health promotion in the community pharmacy setting, the activities they have observed and the perceived role/s of pharmacy staff in this area. A survey was informed by five interviews with pharmacy consumers and a literature review. Adult pharmacy consumers were recruited nationwide via a Research Panel company between December 2018 and January 2019. Survey data were descriptively analysed and associations confirmed by chi-square analysis. Data were analysed from 537 of the 577 respondents; 34.3% of participants had a lived experience of mental illness. Just under a quarter of participants (23.3%) had observed mental health promotion in community pharmacy. Pharmacy was viewed as a suitable environment for this promotion by most respondents (n=446/516), particularly those with lived experience, with a preference for in-store leaflets, posters and linking with existing national mental health organisations/campaigns. Lack of privacy and the busy pharmacy environment were identified as barriers for promotion in this setting. There is a clear potential for mental health promotion within community pharmacies, although the uptake and impact of such activities require further investigation. SO WHAT?: These findings highlight a missed opportunity for pharmacists to engage with consumers about mental health and well-being, even though community pharmacies are accessible health care destinations.

Mental health stigma and undergraduate nursing students: A self-determination theory perspective

BackgroundClinical placements are essential in preparing students for professional practice. Given the serious negative impact of stigma on people with lived experiences of mental illness, it is essential to explore whether the educational setting of a clinical placement can influence mental health stigma. AimsUsing a Self-Determination Theory lens, this study aimed to examine whether the educational setting of a clinical placemen influences the stigma of undergraduate nursing students toward people with lived experiences of mental illness. DesignQuasi-experimental; pre-test post-test. MethodsNinety-nine undergraduate students enrolled in an accredited nursing program within Australia completed two surveys pre- and post-clinical placement. The surveys measured the educational setting (learning climate) and mental health stigma (social distance). FindingsStudents who partook in an Autonomy-Supportive mental health clinical placement reported a significant decrease in stigma from pre-to-post placement, whereas the Balanced/Neutral group reported a significant increase in stigma from pre-to-post-placement. DiscussionThe findings of this research have considerable implications for nursing facilitators and preceptors. Those that support autonomy amongst future nursing professionals are more likely to positively influence students’ mental health stigma. Those who do not promote an autonomy-supportive setting may actually worsen mental health stigma. ConclusionThe educational setting in which a clinical placement occurs can influence nursing students’ mental health stigma.

Recovery college as a transition space in the journey towards recovery: An Australian qualitative study.

Recovery colleges are formal learning programs that aim to support people with a lived experience of mental illness. In this study, we aimed to explore the experiences of participants in a pilot recovery college that opened in Adelaide, South Australia, in 2016. A qualitative exploratory study was conducted involving interviews with learners (n = 8) and focus groups with lived experience facilitators (course facilitators with a lived experience of mental illness, n = 5), Clinician facilitators (mental health service staff facilitators, n = 4), and care coordinators (staff providing case management support, n = 5). Three main themes (hope, identity, and the recovery college as a transition space) and two subthemes (recovery college experience and outcomes) were identified. The results showed that the recovery college provided a transition space for shifting learners' identities from patient to student, facilitated by the experiences and outcomes of the recovery college, providing hope for the future. This study highlights the importance of providing mentally healthy and non-stigmatizing learning environments to promote and cement recovery for people with a lived experience of mental illness.

Mental health informed physical activity for first responders and their support partner: a protocol for a stepped-wedge evaluation of an online, codesigned intervention

BackgroundFirst responders (police, fire and ambulance officers) are at a significantly increased risk of experiencing poor mental health, including depression and post-traumatic stress disorder. These conditions are associated with high...

Assessing students’ mental health crisis skills via consumers with lived experience: a qualitative evaluation

Purpose Suicide is a major cause of preventable mortality and primary healthcare professionals, including pharmacists, require appropriate training to communicate with and support people at risk of suicide. Mental Health First Aid (MHFA) training teaches participants how to communicate with and support people experiencing suicidal thoughts. The purpose of this paper is to use a novel MHFA assessment approach involving simulated role-plays enacted by people with a lived experience of mental illness and explore MHFA participants’ and simulated patients’ views of participating in simulated role-plays of mental health crises. Design/methodology/approach MHFA is embedded into the Sydney School of Pharmacy curriculum. Post-MHFA training, pharmacy students were randomly allocated to participate in or observe a simulated role-play of one of three suicide crisis scenarios, with a person with a lived experience of mental illness. Two purpose-designed, semi-structured interview guides were used to conduct student focus groups and interviews with simulated patients to explore their views. Focus groups and interviews were digitally recorded, transcribed verbatim and thematically content analysed using a constant comparison approach. Findings In total, 22 pharmacy students participated in two focus groups and three simulated patients participated in interviews. Five themes emerged including: the benefits of participating; the value of having a lived experience; challenges with suicide assessment; communication; and the value of immediate feedback and debrief. Originality/value Students and simulated patients both benefited from participating in the role-plays. Students valued practicing their MHFA skills post-training with simulated patients with lived experiences. This unique approach to post-training assessment provides an opportunity to practice skills realistically and authentically, in a safe, learning environment.

Mind the Gap: Information Sharing Between Health, Mental Health and Social Care Services.

Information sharing is key to integrated, collaborative, and continuous care. People with a lived experience of mental illness may access several services across the health, mental health and social care sectors, which creates challenges for information sharing. The health informatics community has traditionally not prioritised social care informatics. However, with the growing role of social care in the lives of people with complex health conditions, now is the time when we must consider the articulation between health informatics and social care informatics in Australia. This paper reports the results of a qualitative study to understand the current context of information sharing between health, mental health and social care services. Interviews and focus groups with nine clinicians, caseworkers and support workers were undertaken. Thematic analysis supported the development of several themes. These include the growing role of social care services, the importance of trust and the challenge created by the complexity of conditions people can present with when accessing social care services. To ensure the growing range of social care services do not get left behind with the increasing digitisation of the Australian health system, the health informatics community should prioritise the inclusion of social care informatics in its scope of practice.

Staff Expectations of an Australian Integrated Model of Residential Rehabilitation for People With Severe and Persisting Mental Illness: A Pragmatic Grounded Theory Analysis.

Mental health services increasingly involve peer support workers. Staff expectations of working in these services are important because they frame processes and cultures that develop within services, and influence work satisfaction, staff retention, and consumer experience. We examined staff expectations at two new community-based residential rehabilitation units trialing a staffing model where most staff are employed based on their lived experience of mental illness. Qualitative semi-structured interviews were conducted with ten peer support workers and five clinical staff on commencement at Community Care Units that opened in 2014 and 2015. Staff views covered individual motivations, emerging organizational practices and culture, and the nature and philosophy of recovery and recovery-oriented rehabilitation. Subtle differences were evident in staff understandings of recovery and recovery-oriented rehabilitation. Staff were mostly optimistic about the services’ potential but expressed uncertainty about how the professions would work together and practicalities of the new roles. Concerns that staff foreshadowed are consistent with those reported in the literature and can be pre-emptively addressed. Future research on staff experiences will enhance understanding of how staff perceptions of recovery-oriented rehabilitation change over time, and of how these relate to consumer experiences and outcomes.

The crucible of co-production: Case study interviews with Recovery College practitioner trainers

Objectives: This study explored healthcare professionals’ accounts of being practitioner trainers in a mental health Recovery College, where they worked with peer trainers, who were people with lived experience of mental illness, to co-produce workshops for mental health service users and staff. The aim of this study was to understand the process of co-production in the Recovery College from the perspective of practitioner trainers. Design: Single-site case study. Setting: A Recovery College in the South of England, open to staff and service users from one mental health care provider organisation. Methods: Semi-structured interviews with eight mental healthcare professionals. Transcripts were thematically analysed. Results: A central image of ‘the workshop as crucible’ emerged from the three themes derived from the analysis. Co-facilitating the workshop was a ‘structured’ encounter, within which health professionals experienced ‘dynamism’ and change. For them, this involved experiences of ‘challenge and discomfort’. Conclusion: Findings from this study contribute to the evidence base for the evaluation of Recovery Colleges by focusing on the training impact on staff. Findings suggest that taking on a trainer role in Recovery College co-production is beneficial for healthcare professionals as well as mental health service users, especially if healthcare professionals are open to the dynamism and possible discomfort of these workshop encounters. Future research, however, should expand beyond single-site case studies to test the extent to which this metaphor and themes are appropriate to describing the ‘transformative’ element of co-production.

Health impacts of a WISE: a longitudinal study

PurposeThis paper aims to report findings from the first year of the Vanguard Laundry evaluation study, which explores the impacts of a work integration social enterprise (WISE) on health.Design/methodology/approachDrawing on social determinants of health (SDH) conceptual framework, a mixed-methods longitudinal case study is used to evaluate the health impacts of a WISE employing people with lived experience of mental illness. In stage one of this study, 31 participants including staff and managers completed semi-structured interviews, validated health and well-being measures and a questionnaire based on the organisation’s theory of change. Quantitative data were analysed descriptively, and qualitative data are analysed thematically.FindingsData provided further evidence of the conceptualised WISE pathways for impact on SDH through employment, social integration, increased income, improved social position and living conditions. While social enterprise (SE) beneficiary staff had lower well-being scores than other staff members and management, the majority reported improved health, increased social supports and enhanced well-being through improved material conditions and increased sense of purpose, confidence and social connection.Research limitations/implicationsStage one of this study relied on self-reported data. Future stages will incorporate income support and health data extracted from government agencies with participant consent.Originality/valueThis paper responds to calls for longitudinal studies that include a range of participants and use health outcome measures to further explore how a WISE impacts health through acting on SDH.

Understanding what it means to be socially included for people with a lived experience of mental illness.

Social inclusion is increasingly understood to have positive and beneficial implications for the mental health outcomes of people with severe mental illness. The concept is plagued by definitional inconsistencies and a lack of consensus regarding what it means to be socially included, in particular for groups most vulnerable to social exclusion, such as people with mental illness. The aim of this study was to obtain a consensus regarding the key contributors to social inclusion from the perspective of people with and without a lived experience of mental illness (consumers of mental health services, carers, and general community members). Delphi methodology was employed to reach consensus agreement. The Delphi questionnaire was based on a previous review of the literature and consisted of 147 items categorized into 13 domains. It was presented to participants over three rounds. Participants (N = 104) were recruited into three groups (32 consumers, 32 carers of people with a mental illness, and 40 members of the general community - neither consumers nor carers). Retention of participants from Round 1 to Round 3 was 79.8%. Similarities and differences were observed between the groups. A number of items were very strongly endorsed as key contributors to social inclusion, relating to social participation, social supports, housing, neighbourhood, community involvement, employment and education, health and well-being and service utilization. Findings supported previous work, indicating the importance of having a strong sense of connection with others as well as the importance of safe and stable housing, support services and personal motivation and hope. We obtained a well-rounded perspective among groups regarding the key contributors to social inclusion, with a particular relevance to people living with mental illness. This perspective has significant clinical and research utility.

What happens when peer support workers are introduced as members of community-based clinical mental health service delivery teams: a qualitative study

ABSTRACTThe insights of people who have experienced mental health issues are at the core of recovery frameworks. The inclusion of peer support workers in clinical care teams is crucial to a recovery-supportive focus. Peer support workers facilitate egalitarian spaces for non-peer staff and consumers to frankly discuss the lived experience of mental illness. This study was part of a larger evaluation study which aimed to explore the implementation of a newly formed community-based mental health team in South-East Queensland, Australia. The paper reports the role of peer support workers and answers two research questions: “How is peer support work constructed in an interprofessional clinical care team?” and (2) “How do interprofessional mental health clinical care teams respond to the inclusion of peer support workers as team members?” Three themes were identified: peer support worker’ ability to navigate a legitimate place within care teams, their value to the team once they established legitimacy and their ability to traverse the care landscape. Ultimately, successful integration in interprofessional teams was dependent upon the ability of clinical staff to focus on unique strengths that peer support workers bring, in addition to lived experience with mental illness as a carer or consumer.

Mental Health First Aid training: lessons learned from the global spread of a community education program.

Many health education interventions achieve limited dissemination, even when there is supporting evidence for their efficacy. The authors think there are lessons to be learned for those aiming to disseminate such interventions from those rare examples where the dissemination has been successful. This article describes the six factors that appear to underlie the success of one such program: Mental Health First Aid (MHFA) training. MHFA training began in Australia in 2000 as a collaboration between one volunteer with lived experience of mental illness and a researcher. From this small beginning, it spread rapidly in Australia and to other countries. By mid-2018, over 700,000 Australians had been trained and the program had spread to 25 other countries, with over 2.7 million people trained globally.

The Social and Emotional Impact of Involving Individuals With Mental Illness in the Research Process.

There is a need to involve individuals with a lived experience in health and medical research. Some organizations have developed mechanisms to seek the input of people with a lived experience. However, there are few examples of qualitative research into the impacts of participation. In this study, we investigate the social and emotional impact of participation on individuals, as well as the perceived impact on the organization, in an advisory panel at an Australian mental health research institute. In-depth qualitative interviews were conducted with 50% of the participants on the panel to understand how they conceptualized their involvement. Participants became invested in the organization and their role within it, and found it personally valuable to access diverse perspectives and discuss mental health outside a treatment context. These findings suggest that participating in the research process is beneficial to individuals with a lived experience of mental illness.

The patient experience in a community pharmacy mental illness and addictions program.

The Bloom Program was designed to enhance pharmacists' care of people with lived experience of mental illness and addictions in Nova Scotia. The Program's demonstration period was from September 2014 to December 2016 and included a qualitative evaluation of the patient experience. Patients were recruited for individual interviews through Bloom Program pharmacies. Interviews were transcribed verbatim and analyzed following Braun and Clarke's 6-step approach for thematic analysis. Ten patients were interviewed between May and June 2016. Ten themes were determined through data analysis and included medication management, accessing pharmacists in a new way, providing social support, bridging service gaps, providing interim care, reducing financial barriers, navigation and advocacy, holistic approaches, empowerment through knowledge and awareness and collaboration. Pharmacists expectedly provided medication management activities to patients for both physical and mental health concerns in the Bloom Program. Many activities conducted with Bloom Program patients fell outside of dispensing roles and medication management. These activities, such as social support, triage, navigation and increasing access, which were highly valued by patients, are poorly measured and assessed in pharmacy practice research. Participants in the Bloom Program reported the significant contributions of pharmacists and pharmacy teams in their overall health and wellness. Future evaluations of interventions like the Bloom Program should include measurement of constructs valued by patients and also consider impacts on inequalities and inequities. Pharmacy practice researchers can benefit from other research and evaluation being conducted for primary care interventions.