Severe Mental Illness Experience Research Articles

Low satisfaction with sex life among people with severe mental illness living in a community

Research on the sex lives of people with severe mental illness (SMI) most often focuses on dysfunction and the side-effects of medication. We wished to determine how people with SMI experience sex and assess satisfaction with it in a broader evaluation of quality of life. Data were gathered using mixed methods, including a reliable psychometric quality of life instrument, and in-depth interviews. Sex life showed the lowest rating of all quality of life domains, with men indicating lower satisfaction in this area than women. Low satisfaction also correlated with lower scores on the total quality of life index. Sexuality and intimate relations were generally experienced as out of reach or something of secondary importance that had to be controlled, according to many of those suffering from SMI. Programs such as patient disorder-specific or partner assisted interventions, to increase the possibility of sustaining a sex life might need to be added to existing recommendations for people with SMI living in a community.

Searching for Sobriety: How Persons with Severe Mental Illness Experience Abstaining from Substance Use

Individuals diagnosed with severe mental illness (SMI) are more vulnerable to substances than are other people. Many people with SMI tend to attain full remission of their substance use, but others relapse frequently. There is more research on the reasons for substance use than on the reasons for abstaining among these individuals. Information from the latter may contribute to a better understanding of how individuals with SMI experience abstaining from substance use. Objective: The aim of this explorative study was to examine experiences of abstaining from substances of persons diagnosed with SMI. We examined both the reasons given and the requirements and strategies used when abstaining. Methods: A qualitative study with semi-structured interviews was conducted, and a descriptive and explorative design was applied. This study included a purposeful sample of 11 patients with SMI and substance use being treated by assertive community treatment teams. Results: The main reasons for quitting substance use were social relationships and meaningful activities. The stated requirements and strategies used in the search for sobriety were detachment towards people and places, positive thinking, controlling feelings and emotions, and fear of dependency. Conclusion: Our results are consistent with those from other qualitative studies on the importance of social relationships and meaningful activities as expressed reasons for abstaining. The strategy of actively avoiding a former adverse milieu to reach sobriety is consistent with findings from one similar study. The strategies of fear of adverse consequences, positive thinking, and controlling feelings and emotions found in the present study have not been reported by other qualitative studies.

A Recovery-Oriented Alternative to Hospital Emergency Departments for Persons in Emotional Distress: “The Living Room”

Persons with severe mental illness experience episodic crises, resulting in frequent visits to hospital emergency departments (EDs). EDs, however, are not the most effective treatment environments for these individuals who might better be served elsewhere in an environment based on recovery-oriented framework. The purpose of this study is to describe the lived experience of guests (persons in emotional distress) and staff (counselors, psychiatric nurses, and peer counselors) of a community, recovery-oriented, alternative crisis intervention environment—The Living Room (TLR). The total sample is comprised of 18 participants. An existential phenomenological approach was used for this qualitative, descriptive, study. Through non-directive in-depth interviews, participants were asked to describe what stands out to them about The Living Room. Interviews were audio-recorded, transcribed verbatim, and systematically analyzed using descriptive phenomenological methods of analysis by an interdisciplinary and community-based participatory research team. Participants’ experiences in hospital EDs and inpatient psychiatric units contextualized the phenomenological experience of TLR environment. The final thematic structure of the experience of TLR included the following predominant themes: A Safe Harbor, At Home with Uncomfortable Feelings, and It's a Helping, No Judging Zone. Findings from this qualitative study of a recovery-based alternative to hospital EDs for persons in emotional distress are supported by anecdotal and empirical evidence that suggests that non-clinical care settings are perceived as helpful and positive.

Improvement of care for the physical health of patients with severe mental illness: a qualitative study assessing the view of patients and families

BackgroundPatients with severe mental illness (SMI) experience more physical comorbidity than the general population. Multiple factors, including inadequate seeking of healthcare and health care related factors such as lack of collaboration, underlie this undesirable situation. To improve this situation, the logistics of physical health care for patients with SMI need to be changed. We asked both patients and their families about their views on the current organization of care, and how this care could be improved.MethodsGroup and individual interviews were conducted with patients and family of patients to explore their needs and preferences concerning the care for the physical health of patients with SMI, and to explore the shortcomings they had experienced. Using thematic analysis, responses were firstly divided into common topics, after which these topics were grouped into themes.ResultsThree major themes for the improvement of the physical care of patients with SMI were found. Firstly, the reduced ability of patients with SMI to survey their own physical health interests requires health care that is tailored to these needs. Secondly, the lack of collaboration amongst mental health care professionals and general practitioners (GPs) hinders optimal care. Thirdly, concerns were expressed regarding the implementation of monitoring and supporting a healthy lifestyle. Patients with SMI welcome this implementation, but the logistics of providing this care can be improved.ConclusionsAn optimal approach for caring for the physical health of patients with SMI requires a professional approach, which is different to the routine care provided to the general public. This approach can and should be accomplished within the usual organizational structure. However, this requires tailoring of the health care to the needs of patients with SMI, as well as structural collaboration between mental health care professionals and GPs.

Defining Quality of Life in the Children of Parents with Severe Mental Illness: A Preliminary Stakeholder-Led Model

Severe parental mental illness poses a challenge to quality of life (QoL) in a substantial number of children and adolescents, and improving the lives of these children is of urgent political and public health concern. This study used a bottom-up qualitative approach to develop a new stakeholder-led model of quality of life relevant to this population. Qualitative data were collected from 19 individuals participating in focus groups or individual interviews. Participants comprised 8 clinical academics, health and social care professionals or voluntary agency representatives; 5 parents and 6 young people (aged 13–18 yrs) with lived experience of severe parental mental illness. Data underwent inductive thematic analysis for the purposes of informing a population-specific quality of life model. Fifty nine individual themes were identified and grouped into 11 key ‘meta-themes’. Mapping each meta-theme against existing child-centred quality of life concepts revealed a multi-dimensional model that endorsed, to a greater or lesser degree, the core domains of generic quality of life models. Three new population-specific priorities were also observed: i) the alleviation of parental mental health symptoms, ii) improved problem-based coping skills and iii) increased mental health literacy. The identification of these priorities raises questions regarding the validity of generic quality of life measures to monitor the effectiveness of services for families and children affected by severe mental illness. New, age-appropriate instruments that better reflect the life priorities and unique challenges faced by the children of parents with severe mental illness may need to be developed. Challenges then remain in augmenting and adapting service design and delivery mechanisms better to meet these needs. Future child and adult mental health services need to work seamlessly alongside statutory education and social care services and a growing number of relevant third sector providers to address fully the quality of life priorities of these vulnerable families.

From therapy to poetry and back again: One writer's journey

This reflective piece suggests three phases from therapeutic writing to full-fledged poetry to an audience's reading and discussion, illustrated with specific examples and commentary. The author, a social scientist, an adult educator and a published poet, begins with the role of writing in her own processing of the painful experience of a family member's severe mental illness and suicide, showing us her earliest therapeutic writing. She then illuminates a second phase, in which she gives us an inside look at the rewriting process that led to two poems suitable for public display. She considers how the resulting poems might be used for both therapeutic and educational purposes, offering discussion prompts and questions related to the poems.

Life‐sharing experiences of relatives of persons with severe mental illness – a phenomenographic study

Relatives of those suffering from severe mental illness experience multiple challenges and a complex life situation. The aim of this study was to describe life-sharing experiences from the perspective of relatives of someone with severe mental illness. A qualitative, descriptive study was performed, and interviews were carried out with eighteen relatives of persons with severe mental illness. A phenomenographic analysis, according to the steps described by Dahlgren and Fallsberg, was used to describe the relatives' conceptions of their situation. The findings show that the experiences of these relatives can be summarized in one main category: 'The art of balancing between multiple concerns'. Two descriptive categories emerged: 'Making choices on behalf of others and oneself' and 'Constantly struggling between opposing feelings and between reflections'. Relatives report that they have to manoeuvre between different ways to act and to prioritize between different wishes and needs. In addition, they face a wide range of strong feelings and they search for hope and meaning. Relatives of someone with severe mental illness have to balance multiple concerns, which induce ethical dilemmas. They felt love, compassion or sense of duty towards the mentally ill person. The changeable situation made it difficult for the relatives to establish a balance in their lives. To be able to prioritize some private time was important. Relatives need own support and sufficient follow-up of the mentally ill next of kin from the mental health services.

“Left Alone with Straining but Inescapable Responsibilities:” Relatives’ Experiences with Mental Health Services

Relatives of persons with severe mental illness experience burden and straining changes in their lives that put their health at risk. Consequently, they need support from health professionals. The aim of this study was to describe experiences from encounters with mental health services as seen from the point of view of relatives of persons with severe mental illness. A qualitative, explorative study was performed, based on two open-ended questions in a cross-sectional study of relatives’ health, burden, and sense of coherence (n = 216). A manifest qualitative content analysis was used to describe the relatives’ experiences. The findings show that some relatives had experienced positive encounters with health personnel, but the majority of experiences reported were negative. The encounters can be summarized into one main category: “Left Alone with Straining but Inescapable Responsibilities.” Two categories emerged: “Striving for Involvement for the Sake of the Mentally Ill Person,” and “Wanting Inclusion for the Sake of Oneself.” There is a gap between relatives’ needs for support in order to handle their own situation in relation to their mentally ill next of kin, and what they actually receive from the mental health services. The findings suggest that health professionals should collaborate with and support these relatives.

Aging With a Severe Mental Illness: Challenges and Treatments

Severe mental illness (SMI) impacts many different facets of individuals' lives. As they age, those with SMI experience increased physical illnesses, functional impairment, cognitive deficits, and social disability. To promote more effective social work practice with this population, this article highlights the major biopsychosocial and family issues of aging with a psychiatric diagnosis. In addition, intervention approaches that have demonstrated efficacy are summarized along with ways to coordinate services across multiple service delivery sectors. Finally, future directions in practice and research are presented to develop additional methods of support for older adults with SMI and their families.

Personal experiences and perspectives of psychiatric intensive care and recovery

Two stays in different psychiatric hospitals left me with very differing experiences of severe mental illness. The impact of the more severe episode was much reduced due to the positive way in which staff interacted with me. Recovery was impeded during the first episode by the paucity of therapeutic relationships with staff and the absence of control over one’s medical choices. The role of being a patient was very much a negative experience and the memories of which are still with me ten years on. A positive outlook can be enormously helpful when relayed from staff to patients.

Loss, psychosis, and chronic suicidality in a Korean American immigrant man: Integration of cultural formulation model and multicultural case conceptualization.

Culture shapes the nature, experience, and expression of psychopathology and help-seeking behavior across ethnically diverse groups. Although the study of psychopathology among Asian Americans has advanced, clinicians remain in need of culturally appropriate tools for the assessment and diagnosis of severe mental disorders including psychotic symptoms among Asian Americans. In this article, we present a brief overview of two culturally relevant conceptual tools: a) the Cultural Formulation Model, and b) the Multicultural Case Conceptualization approach. We use a case scenario to illustrate the integration of these two approaches in providing culturally responsive clinical conceptualization, assessment and treatment of a Korean American immigrant suffering from prominent psychiatric symptoms. We intend this discussion to engender further empirical work to advance our knowledge of the manifestation and experience of severe mental illness including psychotic disorders among Asian Americans, and contribute to culturally competent prevention and intervention of chronic and persistent mental illness within this group.

Oral health problems and support as experienced by people with severe mental illness living in community-based subsidised housing - a qualitative study

The purpose of this study was to explore how persons with severe mental illness (SMI) experience oral health problems (especially dry mouth), and weigh the support they received in this regard from professionals and staff at community-based congregate housing through a controlled intervention programme. Oral health problems and dry mouth are found in association with apathy and indifference, cognitive deficits, and long-term medication with psycho-pharmacological drugs. The present study describes the results from one part of a longitudinal intervention programme, which sought effective ways of mitigating dry mouth through increased support with oral health problems. This part consists of 67 informal interviews with ten participants in two community-based urban housing projects between November 2006 and June 2007, with a follow-up session in December 2007. Content analysis of the results yielded five categories: The shame of having poor dental health, history of dental care, experiences of self-care, handling of oral health problems, and experiences of staff support. Poor oral health caused shame and limited participation in social activities. Participants avoided oral health issues by such circumventions as denial of a tooth ache or dental infections, or postponing oral problems with the hope that they would die away. Offers of support were frequently resisted because of unsatisfactory prior encounters with dental professionals and staff. Our findings suggest that self-care needs to be facilitated in an unobtrusive manner with minimal staff involvement, and clients should be referred to dental care providers experienced in treating people with SMI.

S10-03 - Hope and personal meaning in schizophrenia

For the individual a psychotic episode involves the profound experience of distress and identity confusion. The process of recovery includes redefining the self, understanding what has happened and finding new meaning and purpose in order to establish a personally satisfying, hopeful and contributing life.Hope may be defined as a primarily future-orientated expectation of attaining personally valued goals that will give or restore meaning to one's own experiences. As such it may be seen as a pre-requisite for recovery but also as an important outcome of the recovery process.This presentation will explore the connection between hope and the attribution of meaning in the process of overcoming demoralisation, resolving psychological defense and integrating the experience of severe mental illness from a psychological, philosophical, and therapeutic viewpoint. Empirical data on hope and its relation to personal explanations following a psychotic episode will be presented.

Care for patients with severe mental illness: the general practitioner's role perspective.

BackgroundPatients with severe mental illness (SMI) experience distress and disabilities in several aspects of life, and they have a higher risk of somatic co-morbidity. Both patients and their family members need the support of an easily accessible primary care system. The willingness of general practitioners and the impeding factors for them to participate in providing care for patients with severe mental illness in the acute and the chronic or residual phase were explored.MethodsA questionnaire survey of a sample of Dutch general practitioners spread over the Netherlands was carried out. This comprised 20 questions on the GP's 'Opinion and Task Perspective', 19 questions on 'Treatment and Experiences', and 27 questions on 'Characteristics of the General Practitioner and the Practice Organisation'.Results186 general practitioners distributed over urban areas (49%), urbanised rural areas (38%) and rural areas (15%) of the Netherlands participated. The findings were as follows: GPs currently considered themselves as the first contact in the acute psychotic phase. In the chronic or residual phase GPs saw their core task as to diagnose and treat somatic co-morbidity. A majority would be willing to monitor the general health of these patients as well. It appeared that GP trainers and GPs with a smaller practice setting made follow-up appointments and were willing to monitor the self-care of patients with SMI more often than GPs with larger practices.GPs also saw their role as giving support and information to the patient's family.However, they felt a need for recognition of their competencies when working with mental health care specialists.ConclusionGPs were willing to participate in providing care for patients with SMI. They considered themselves responsible for psychotic emergency cases, for monitoring physical health in the chronic phase, and for supporting the relatives of psychotic patients.

The power of identification: peer support in recovery from mental illness

Peer support has been described as facilitating individuals' recovery from mental illness and offering useful support, hope and encouragement. The aim of this study was to explore how individuals with experience of severe mental illness in Sweden perceived peer support facilitating their recovery. The results from the grounded theory analysis of 27 in-depth interviews illustrated that despite diagnoses of severe mental illness, often described in terms of an inability to interact with other people, the identification when meeting others with similar experiences were powerful. The participants described how peer support meant an end to isolation and became an arena for identification, normalization, connection and being important to others. Involvement in the peer support group is related to time and recovery stage, and to how the participants in relation to peers pay attention to their own achievements and their recovery progress, also comparing their level of wellness with that of their peers.

The Invisibility of Violence Against Women Diagnosed With Schizophrenia

Women diagnosed with severe mental illness experience twice the rates of violence compared with women without mental illness. Despite awareness of violence, mental healthcare providers feel powerless to combat the problem. This article synthesizes 2 previous interpretive studies that examined violence perpetrated against women diagnosed with schizophrenia. This synthesis critically examines the perspectives of women who experience violence and schizophrenia and case managers who care for them. Stigma was an overarching theme in participants' stories but each group differed in its understanding of how stigma impacted women's lives. This disconnection perpetuates stigma and allows violence to remain invisible.

‘Stealing Me from Myself’: Identity and Recovery in Personal Accounts of Mental Illness

To understand and promote recovery from serious mental illnesses, it is important to study the perspectives of individuals who are coping with mental health problems. The aim of the present study was to examine identity-related themes in published self-narratives of family members and individuals with serious mental illness. It adds to the body of research addressing how identity affects the process of recovery and identifies potential opportunities for using published narratives to support individuals as they move toward positive identities that facilitate recovery. Forty-five personal accounts from individuals with severe mental illness, which were published in two prominent research journals between 1998 and 2003, were qualitatively analysed. Individuals with mental illness and their family members described a loss of self and identity that had to be overcome, or at least managed, for recovery to become possible. Writers described (i) a loss of self, (ii) the duality of (ill/well) selves, (iii) perceptions of normality, (iv) specific concerns about parenting and identity, and (v) hope and reconciliation. Individuals' stories of their experiences of severe mental illness describe severe challenges managing identity. Efforts to publish personal accounts that focus on strengths-based patient-centred stories, rather than on deficits, could be helpful to provide hope for patients. These published narratives highlight the importance of moving recovery and hope to the forefront among patient, family, and clinician groups. Increasing such information and role models can provide important resources to individuals working to redefine themselves and create a sense of self-worth and stable identity that will support productive, happy lives.

Do individuals with a severe mental illness experience greater alcohol and drug-related problems? A test of the supersensitivity hypothesis

The supersensitivity hypothesis posits that individuals with a severe mental illness (i.e., schizophrenia and bipolar disorder; SMI) are more likely to be diagnosed with a substance abuse as opposed to a substance dependence diagnosis, and experience greater negative consequences associated with substance use at lower levels of consumption, as compared with non-SMI substance abusers. This is the first known study to test this hypothesis with a control group of non-SMI substance abusing individuals. Forty-two individuals with only a substance use disorder (SUD-only) and 53 dually diagnosed individuals (DD) were compared on measures of substance use, alcohol and drug dependence, negative consequences, substance use outcome expectancies, and motivation for change. A third group of SMI-only individuals (i.e., no SUD; n = 35) were also recruited and all three groups were compared on psychological symptoms. Substance use, negative consequences, substance use outcome expectancies, motivation for change, and severity of alcohol and drug dependence were not found to differ significantly between the DD and SUD-only groups. However, the DD group had significantly greater levels of psychological symptoms, as compared with the SMI-only and SUD-only groups. Overall, this study does not provide support for the supersensitivity hypothesis.

Bipolar disorder and childbirth: the importance of recognising risk

In October 2003 the report was published of an inquiry into the death of a psychiatric colleague that raised a number of important questions – not least regarding our management of women with bipolar disorder in pregnancy and the postpartum period (North East London Strategic Health Authority, 2003). Dr Daksha Emson took the life of herself and her 3-month-old daughter, Freya. This tragedy took place during a psychotic episode triggered by childbirth and was a consequence of her history of bipolar affective disorder. Sadly, the case of Dr Emson is far from unique. The Confidential Enquiries into Maternal Deaths (2001) found that suicide had become the leading cause of maternal mortality in the UK, accounting for 28% of maternal deaths (Oates, 2003a). The majority of the women who died by suicide suffered an abrupt onset of a severe psychotic illness within days of childbirth – a ‘puerperal psychosis', to use the traditional nosological label. For some women an episode of puerperal psychosis will be the first experience of severe mental illness, but a significant proportion of women will have had previous episodes. In the Confidential Enquiries into Maternal Deaths (2001), for example, 46% of the women who killed themselves (the majority by violent means) had previously been in contact with psychiatric services – and half of these had had a previous admission with a severe episode of illness following childbirth (Oates, 2003b). In many maternal suicides, therefore, the occurrence of an episode of severe post-partum psychiatric illness is an eminently predictable event. Although some women in the report were in contact with psychiatric services, none had received a detailed risk assessment, none had a formal management plan, and none was under close surveillance in the puerperium. It is also worth noting that none of the women in the cases of maternal suicide reported in the Confidential Enquiries was under the care of a mother and baby unit or perinatal psychiatric service (Oates, 2003a). The report on maternal deaths in 2000–2002 has now been published (Confidential Enquiries into Maternal Deaths, 2004) and, sadly, the findings are similar.

Until the Crisis Is Over

Until the Crisis Is Over