Pathways to mental health services for young people: a systematic review

Purpose

While early access to appropriate care can minimise the sequelae of mental illnesses, little is known about how youths come to access mental healthcare. We therefore conducted a systematic review to synthesise literature on the pathways to care of youths across a range of mental health problems.

Methods

Studies were identified through searches of electronic databases (MEDLINE, PsycINFO, Embase, HealthSTAR and CINAHL), supplemented by backward and forward mapping and hand searching. We included studies on the pathways to mental healthcare of individuals aged 11–30 years. Two reviewers independently screened articles and extracted data.

Results

Forty-five studies from 26 countries met eligibility criteria. The majority of these studies were from settings that offered services for the early stages of psychosis, and others included inpatient and outpatient settings targeting wide-ranging mental health problems. Generally, youths’ pathways to mental healthcare were complex, involved diverse contacts, and, sometimes, undue treatment delays. Across contexts, family/carers, general practitioners and emergency rooms featured prominently in care pathways. There was little standardization in the measurement of pathways.

Conclusions

Except in psychosis, youths’ pathways to mental healthcare remain understudied. Pathways to care research may need to be reconceptualised to account for the often transient and overlapping nature of youth mental health presentations, and the possibility that what constitutes optimal care may vary. Despite these complexities, additional research, using standardized methodology, can yield a greater understanding of the help-seeking behaviours of youths and those acting on their behalf; service responses to help-seeking; and the determinants of pathways. This understanding is critical to inform ongoing initatives to transform youth mental healthcare.

     

Experiences of and attitudes toward mental health services among older youths in foster care

OBJECTIVES: This study explored the experiences of youths in the Missouri foster care system who were receiving mental health services in order to identify characteristics that they valued in relationships with mental health professionals and in the services they received and to examine whether their attitudes toward services were associated with their experiences with services. METHODS: As part of a larger study, 389 youths aged 17 years were asked open-ended questions about their experiences with mental health providers. The qualitative responses were classified through thematic analysis, and the frequencies of themes were assessed. Service use was measured, and the confidence subscale of the Attitude Toward Seeking Professional Psychological Help scale was used to measure attitudes. RESULTS: Youths' comments generally centered on three aspects of their mental health care: their relationship with their mental health provider, the level of professionalism of their provider, and the effects of the treatment, including medication management. Youths who reported only negative experiences had less positive attitudes toward services than other youths, but they were not any more likely to have experienced changes in service use or medication six months later. CONCLUSIONS: Soliciting feedback from youths about mental health services is important to the provision of high-quality care. In addition to themes identified in similar studies, this study suggests that medication management plays an important role in the acceptability of the treatment that youths receive.     

What carers of family members with mental illness say,think and do about their relative's smoking and the implications for health promotion and service delivery: a qualitative study

Few researchers have explored family carers’ perspectives of smoking by their family members with mental illness, despite smoking rates remaining high for people with mental illness. In-depth qualitative interviews with twelve South Australian family carers explored their experiences and views of providing care for people with mental illness who smoke. Data were analysed thematically. Around the central theme of the caring role within the context of mental illness and smoking, were three interrelated themes: (1) responsibility; (2) accommodation; and, (3) dissonance. Carers struggled physically, philosophically and emotionally with perceived responsibilities involving their family member's smoking. They felt isolated and asserted as there was limited support from service providers to assist them. Carers are important agents within the person's immediate environment who could potentially help them to improve their smoking cessation success. Community services aiming to support smoking cessation support for this population need to incorporate the role of family carers.     

Disclosure of domestic violence in mental health settings: A qualitative meta-synthesis

Abstract

Little is known about how psychiatric services respond to service users’ experiences of domestic violence. This qualitative meta-synthesis examined the healthcare experiences and expectations of mental health service users experiencing domestic violence. Twenty-two biomedical, social science, grey literature databases and websites were searched, supplemented by citation tracking and expert recommendations. Qualitative studies which included mental health service users (aged ≥ 16 years) with experiences of domestic violence were eligible for inclusion. Two reviewers independently extracted data from included papers and assessed quality. Findings from primary studies were combined using meta-synthesis techniques. Twelve studies provided data on 140 female and four male mental health service users. Themes were generally consistent across studies. Overarching theoretical constructs included the role of professionals in identifying domestic violence and facilitating disclosures, implementing personalized care and referring appropriately. Mental health services often failed to identify and facilitate disclosures of domestic violence, and to develop responses that prioritized service users’ safety. Mental health services were reported to give little consideration to the role of domestic violence in precipitating or exacerbating mental illness and the dominance of the biomedical model and stigma of mental illness were found to inhibit effective responses. Mental health services often fail to adequately address the violence experienced by mental health service users. This meta-synthesis highlights the need for mental health services to establish appropriate strategies and responses to domestic violence to ensure optimal care of this vulnerable population.     

A Qualitative Exploration of the Views of Policymakers and Policy Advisors on the Impact of Mental Health Stigma on the Development and Implementation of Mental Health Policy in Singapore

Few studies have examined the views of policy makers regarding the impact of mental health stigma on the development and implementation of mental health policies. This study aimed to address this knowledge gap by exploring policymakers’ and policy advisors’ perspectives regarding the impact of mental health stigma on the development and implementation of mental health programmes, strategies, and services in Singapore. In all 13 participants were recruited for the study comprising practicing policymakers, senior staff of organisations involved in implementing the various mental health programmes, and policy advisors. Data was collected through semi-structured interviews, which were transcribed verbatim and analysed using reflexive thematic analysis. Data analysis revealed three superordinate themes related to challenges experienced by the policymakers/advisors when dealing with mental health policy and implementation of programmes. These themes included stigma as a barrier to mental health treatment, community-level barriers to mental health recovery, and mental health being a neglected need. Policymakers/advisors demonstrated an in-depth and nuanced understanding of the barriers (consequent to stigma) to mental healthcare delivery and access. Policymakers/advisors were able to associate the themes related to the stigma towards mental illness with help-seeking barriers based on personal experiences, knowledge, and insight gained through the implementation of mental health programmes and initiatives.

     

Participation in mental healthcare: a qualitative meta-synthesis

Background

Facilitation of service user participation in the co-production of mental healthcare planning and service delivery is an integral component of contemporary mental health policy and clinical guidelines. However, many service users continue to experience exclusion from the planning of their care. This review synthesizes qualitative research about participation in mental healthcare and articulates essential processes that enable service user participation in mental health care.

Methods

Electronic databases were systematically searched. Studies were included if they were peer reviewed qualitative studies, published between 2000 and 2015, examining participation in mental health care. The Critical Appraisal Skills Program checklist was used to assess the quality of each included study. Constant comparison was used to identify similar constructs across several studies, which were then abstracted into thematic constructs.

Results

The synthesis resulted in the identification of six principal themes, which articulate key processes that facilitate service user participation in mental healthcare. These themes included: exercising influence; tokenism; sharing knowledge; lacking capacity; respect; and empathy.

Conclusions

This meta-synthesis demonstrates that service user participation in mental healthcare remains a policy aspiration, which generally has not been translated into clinical practice. The continued lack of impact on policy on the delivery of mental healthcare suggests that change may have to be community driven. Systemic service user advocacy groups could contribute critically to promoting authentic service user participation in the co-production of mental health services.

     

Recovery in Psychosis from a Service User Perspective: A Systematic Review and Thematic Synthesis of Current Qualitative Evidence

There is a growing number of qualitative accounts regarding recovery from psychosis from a service user perspective. The aim of this study was to conduct a systematic review of these qualitative accounts. A thematic synthesis was utilised to synthesise and analyse seventeen studies included in the review. Studies were included if they used a qualitative methodology to explore service users’ experiences of recovery from psychosis as a primary research question. All included studies were subjected to a quality assessment. The analysis outlined three subordinate themes: the recovery journey, facilitators of recovery (e.g. faith and spirituality, personal agency and hope), and barriers to recovery (e.g. stigma and discrimination, negative effects of mental health services and medication). Recovery is an idiosyncratic process but includes key components which are important to people who experience psychosis. These should be explored within clinical practice.     

Understanding the experiences and service needs of siblings of individuals with first-episode psychosis: a phenomenological study

Background: Despite recent focus on developing family‐inclusive services to meet the needs of young people with first‐episode psychosis, the needs of their siblings are often overlooked. Aims: This study explored the experiences and needs of siblings of young adults with first‐episode psychosis receiving support from two Early Intervention in Psychosis Services in South‐East England. Methods: Thirty‐one siblings aged 11–35 years, were given a semi‐structured interview to gather their perspectives and accounts of their lived experiences. The resultant rich qualitative data was analysed using responsive‐reader and framework methods. Results: Six themes were identified: siblings' roles and involvement; emotions; impact on relationships; coping patterns; resilience; and siblings' service needs. Conclusion: All participants had been greatly affected by the onset of the psychosis in their brother or sister. Most siblings did not identify themselves as carers, although most played a significant part in their brother's or sister's life. Participants wanted dynamic, robust and accessible services, especially information and peer support to meet their needs.     

A qualitative investigation of LGBTQ+ young people’s experiences and perceptions of self-managing their mental health

There is evidence that young people generally self-manage their mental health using self-care strategies, coping methods and other self-management techniques, which may better meet their needs or be preferable to attending specialist mental health services. LGBTQ+ young people are more likely than their peers to experience a mental health difficulty and may be less likely to draw on specialist support due to fears of discrimination. However, little is known about LGBTQ+ young people’s experiences and perceptions of self-managing their mental health. Using a multimodal qualitative design, 20 LGBTQ+ young people participated in a telephone interview or an online focus group. A semi-structured schedule was employed to address the research questions, which focussed on LGBTQ+ young people’s experiences and perceptions of self-managing their mental health, what they perceived to stop or help them to self-manage and any perceived challenges to self-management specifically relating to being LGBTQ+ . Reflexive thematic analysis yielded three key themes: (1) self-management strategies and process, (2) barriers to self-management and (3) facilitators to self-management. Participants’ most frequently mentioned self-management strategy was ‘speaking to or meeting up with friends or a partner’. Both barriers and facilitators to self-management were identified which participants perceived to relate to LGBTQ+ identity. Social support, LGBTQ+ youth groups and community support were identified as key facilitators to participants’ self-management of their mental health, which merits further investigation in future research. These findings also have important implications for policy and intervention development concerning LGBTQ+ young people’s mental health.

     

Correlates of stress in carers

Background: Mental health services are required to take account of the needs of carers, yet little is known about how services affect carers. Aims: This paper explores the relationship between the user's mental health problems, the services received and the impact of caring on carers. Methods: Sixty-four carers were interviewed, measuring their experiences of care-giving, carer stress and the service user's level of impairment. A robust, composite measure of user severity was derived. Results: Carers were sometimes better judges than care co-ordinators of user impairment. Their experience reflected the independently rated severity of service users' problems. When carers were aware of care plans, they felt less negative about caring. Even in above-average mental health services, carers lacked information about: care plans, medication and complaints procedures. Conclusions: This evidence can be used in allocating resources such respite care, family therapy and CBT to carers. These findings have implications for how mental health services might improve their provision for carers, for instance, involvement in care planning may help carers to cope.     

“It’s Us That Have to Deal with it Seven Days a Week”: Carers and Borderline Personality Disorder

Carers provide unpaid support to family or friends with physical or mental health problems. This support may be within the domain of activities of daily living, such as personal care, or providing additional emotional support. While research has explored the carer experience within the National Health Service in the United Kingdom, it has not focused specifically on carers of individuals with a diagnosis of borderline personality disorder (BPD). Eight carers for those with a diagnosis of BPD were invited to take part in two focus groups. The first carers’ focus group, entitled ‘The role of Mental Health services,’ produced four super-ordinate themes. The second carers’ focus, entitled ‘Experiences in the Community,’ produced six super-ordinate themes. It seems carers of those with a diagnosis of BPD are continuing to be overlooked by mental health services, and subsequently require more support to ensure their own well-being.     

A qualitative investigation of first-episode psychosis in adolescents

Although a number of researchers have explored the help-seeking pathways of individuals with psychosis, there has been little focus on the experience of illness and services in the under-18 age group. It was our aim to examine by qualitative means the experience of first-episode psychosis and the experience of accessing effective treatment, from two perspectives - that of the adolescents and that of their primary caregivers. A general inductive approach was used to analyse interviews with 12 young people receiving treatment for psychosis, and 12 carers. We found that lack of awareness of mental illness prevented access to early effective treatment. Young people relied on others to access help, and the emotional impact on caregivers was great. Experience of services was mixed, and recommendations were made for both service providers and service users. We discuss the results particularly in relation to developmental and cultural considerations and conclude that there is a need for education about mental illness and normal adolescent development on an individual and societal level.     

Exploring young people's expectations of a youth mental health care service

Client expectations about mental health services relate to the client's and the therapist's role, the therapeutic process and therapeutic outcomes. Research with adults shows that such expectations affect service engagement and clinical outcomes. Aim: The present study investigated expectations for adolescents and young adults, which have not been adequately investigated and may partly explain the reluctance of young people to seek professional help. Methods: Participants included 20 young people aged 12–24 attending their initial session at a youth mental health service, who were interviewed immediately prior to their initial session. Data were analysed using qualitative methods to draw main themes around each of the four expectancy types. Results: Overall, the strongest theme was that young people were unsure of what to expect from attending a mental health service. The key theme for expectations of their role as a client was readiness for therapy, and for the therapist's role the key themes were who they expected to see, the directiveness and likeability of the therapist, and the type of help they expected they would receive. The young people expected that the therapy process would involve simply talking and expected their engagement to be dependent on how much they liked their first few sessions. Outcome expectations were non‐specific and the theme of hopefulness was most evident. Conclusion: As unrealistic and unmet expectations can lead to poorer engagement and outcomes in therapy, the study highlights a need for young people to be better informed about what to expect when coming to mental health services.     

The health and well-being of LGBTQ serving and ex-serving personnel: a narrative review

Abstract

The relaxation of discriminatory policies against lesbian, gay, bisexual, transgender, and queer (LGBTQ) service personnel has led to increased diversity among military populations. Given this increase, it is important to assess sexual and gender minority groups’ health and well-being in the context of military service. This narrative review assessed these outcomes in LGBTQ military personnel. The electronic databases OVID Medline, PsycInfo, and Embase were searched for papers published between January 2000 and July 2018. Thirty papers were included. In line with life course model, studies aligned with four themes: (1) mental health and well-being; (2) stigma and healthcare utilization; (3) sexual trauma; and (4) physical health. These themes highlighted that LGBTQ military personnel and veterans have poorer mental health and well-being; report more stigma and barriers to mental healthcare, which reduces uptake of accessed healthcare services; experience more sexual trauma; and have poorer physical health than heterosexual military personnel and veterans. However, there are substantial gaps in the current evidence for this population. Future research should aim to address limitations of the literature, and to ensure that data on LGBTQ personnel and veterans is collected as standard.     

“I’m Coming Home,Tell the World I’m Coming Home”. The Long Homecoming and Mental Health Treatment of Iraq and Afghanistan War Veterans

This study explored the journey of American armed forces personnel from their decision to join the service, through their service in an active military conflict and how these factors may be associated with potential resistance for mental healthcare. The data came from qualitative interviews with 46 OIF/OEF/OND active-duty military, reservists, and discharged veterans of the average age of 25 years, who presented for a new episode of mental health treatment to a large Veterans Affairs Hospital (VAH) in Northeastern United States in 2011–2012. Qualitative analysis of veterans’ perceptions revealed several major themes describing how a mental health diagnosis would negatively impact both their sense of identity and pragmatic career-building goals: enlisting as a career-building avenue, ‘noble superhero’ identity, escaping from hardship, and mental illness as a career-killer. Findings suggest that factors making young veterans resist mental healthcare may be reduced by partnering VAH psychiatrists with career counselors, and by enhancing military leadership’s awareness and understanding about how to support soldiers with emotional and mental health needs, with a goal to eliminating stigma.     

‘First and foremost a human being…’: user perspectives on mental health services from 50 mentally disordered offenders

Abstract

Background: This is the first study of this kind in a Danish context. Knowledge and research on user perspectives is rather limited in Danish as well as Nordic psychiatry.

Aims: The aim of the study was to create new knowledge on patient and user perspectives and how mentally disordered offenders perceive their hopes and expectancies as well as their interactions with staff in mental health services. Furthermore, the aim was to establish what constitutes helpful care and treatment seen from a user perspective, and how the users themselves look at and perceive their sentences and how, according to them, the overall aim to prevent future crime can be fulfilled.

Method: The study is based on 50 semi-structured qualitative research interviews. Main themes and patterns were condensed and synthesized in a qualitative analysis.

Results: The study has provided useful knowledge of service users’ experiences with nursing, treatment and rehabilitation practices. As part of the interviews, patients were asked to contribute with advice on how to improve practices within mental health services. There are remarkable similarities between the answers, and central points were reiterated from interview to interview: The importance of mental health staff acting with respect and empathy in their interaction with patients, improved communication between patients and professionals involved in clinical pathways, responsiveness and shared decision-making when adjusting medical treatment as well as a greater variety of activities offered within inpatient units.

Conclusion: When asked what it is like to be a forensic patient, the informants underline that despite severe mental illness, social marginalization as well as various criminal records they are still, first and foremost, human beings. However, they often feel dehumanized and monstrous.     

Adults With Mild Intellectual Disabilities’ Experiences of Mental Health Problems: A Qualitative Study Using Interpretative Phenomenological Analysis

Research addressing people with intellectual disabilities’ experiences of mental health problems has mainly focused on the perspectives of family members or professionals, or has been driven by service evaluation. Few studies have sought the views of people with intellectual disabilities about their own mental health experiences. This study explored the experiences of eight adult participants with mild intellectual disabilities who self-identified as having experienced anxiety, depression, and/or psychosis. Participants completed semi-structured interviews and data was analyzed using interpretative phenomenological analysis (IPA). Four superordinate themes emerged: distress, fear and isolation; damaging impact of relationships and people; negative view of self; and the challenge of “getting my sparkle back.” The themes identified in the participants’ accounts of their mental health experiences are discussed in relation to clinical and research implications.     

Service User and Family Carer Involvement in Mental Health Care: Divergent Views

This study assessed differences between service users’, family carers’ and mental healthcare providers’ perceptions on service user and family carer involvement in mental healthcare. We conducted questionnaires in care networks for persons with serious and persistent mental illness, among 111 service users, 73 family carers and 216 mental healthcare providers. Many aspects of service user and family carer involvement are achieved to satisfactory levels while other aspects are scarcely realized. Service users and mental healthcare providers perceive family carer involvement as less important and realized than service user involvement. Family carers hold more favorable views on the importance and realization of involvement than do mental healthcare providers. The implementation of stakeholders’ involvement in healthcare is ongoing. Notwithstanding great efforts, service users’ and family carers’ involvement preferences are not yet fully considered. Developing procedures, training and monitoring cycles regarding involvement may enhance this situation.     

Perceived barriers to mental health services among youths in detention

OBJECTIVE: To examine perceived barriers to mental health service use among male and female juvenile detainees. METHOD: The sample included 1,829 juveniles newly detained in Chicago. The Diagnostic Interview Schedule for Children and Children's Global Assessment Scale were used to determine the need for services. Service use and barriers to services were assessed with the Service Utilization and Risk Factors interview. RESULTS: Approximately 85% of youths with psychiatric disorders reported at least one perceived barrier to services. Most common was the belief that problems would go away without help. Generally, attitudes toward services were remarkably similar across sex and race. Among females, significantly more youths with past service use or referral to services reported this barrier than did youths who had never received or been referred to services. Among males, significantly more youths who had been referred, but never received, services were unsure about where to go for help than youths with past service use. Significantly more youths with no past service use or referrals were concerned about the cost of services than youths with past service use. CONCLUSIONS: Despite the pervasive need for mental health services, the findings of this study suggest that detained youths do not perceive the mental health system as an important or accessible resource. Youths who believe their problems can be solved without assistance are unlikely to cooperate with referrals or to independently seek mental health services. Service providers must be sensitive to clients' perceived barriers to mental health services and work to reduce negative perceptions of services.