Living with Mental Disorder

Insights from Qualitative Research

Jacqueline Corcoran

• Publisher: Routledge
• Year: 2016
• Print ISBN: 9780415739443
• eBook ISBN: 9781317811244
• Edition: 1
• Topic: Social Sciences
• Subtopic: Health Care Delivery
• Index: Social Sciences

This evidence-based text puts a human face on mental disorders, illuminating the lived experience of people with mental health difficulties and their caregivers. Systematically reviewing the qualitative research conducted on living with a mental disorder, this text coalesces a large body of knowledge and centers on those disorders that have sufficient qualitative research to synthesize, including attention-deficit/hyperactivity disorder, autism, intellectual disabilities, mood disorders, schizophrenia and dementia.

Supported by numerous quotes, the text explores the perspective of those suffering with a mental disorder and their caregivers, discovering their experience of burden, their understanding of and the meaning they give to their disorder, the strengths and coping they have used to manage, as well as their interactions with the formal treatment system and the use of medication.

This book will be of immense value to students, practitioners, and academics that support, study, and treat people in mental distress and their families.

1 Introduction and overview

In the US, there were 43.7 million adults diagnosed with a mental disorder in the past year, representing 18.6 percent of the population (National Institute of Mental Health, 2012). For children, one in five (about 20 percent) have or will have a mental disorder. Quantitative studies have indicated the toll that mental disorders may take in terms of impaired educational attainment (Mojtabai et al., 2015), employment in terms of days of disability (Bruffaerts et al., 2012), and increased risk of health conditions, such as ulcer (Scott, Alonso, de Jonge, et al., 2013), heart disease (Scott, de Jonge, Alonso, et al., 2013), diabetes (de Jonge et al., 2014), cancer (O’Neill et al., 2014), and hypertension (Stein et al., 2014). Indeed, the burden of impact of mental disorders is seen as more impairing in terms of personal and relationship functioning than physical disorders, although role functioning was viewed as being similarly impaired (Ormel et al., 2008). Further, there is an increased risk of suicidal behavior associated with mental health disorder diagnoses (Nock et al., 2013).

Qualitative research and its synthesis

Along with quantitative research that can tell us about risks associated with mental illness, qualitative research is ideally poised to relay the personal experience, as well as the meaning people give for their suffering, and what has been helpful or not helpful in terms of recovery and adjustment. Qualitative research further allows for the emergence of strengths and resources that people activate to cope with mental disorder. Qualitative research has been defined at its most basic level by asking “open questions about phenomena as they occur in context rather than setting out to test predetermined hypotheses” (Carter and Little, 2007). Data that is generated and analyzed is textual rather than numerical in nature and seeks to comprehend the meaning of human experience (Carter and Little, 2007; Schwandt, 2007; Strauss and Corbin, 1990).

Despite the advantages of qualitative research for the study of mental disorders, there are also limitations, namely the lack of generalizability beyond the small sample that is typically studied. To make up for this limitation and to contribute to knowledge building that qualitative research can so vitally contribute, meta-synthesis has recently developed.

Meta-synthesis is designed to systematically review and integrate results of primary qualitative studies that have been conducted on a similar topic (Finfgeld, 2003; Sandelowski and Barroso, 2006; Paterson et al., 2001). Meta-synthesis is a valuable way to build knowledge in a particular area of study. By drawing on all the relevant studies at once, it may offer new interpretations of findings. Thus, the knowledge of a given subject may become more substantive than if only individual studies were examined (Finfgeld, 2003). Because of its small scope, qualitative research is not as likely to be funded and can be marginalized. However, through the accumulation of such knowledge that can be found through meta-synthesis, qualitative research can contribute to service delivery and policy changes (Finfgeld, 2003).

Meta-synthesis developed in nursing (Paterson et al., 2001; Noblit and Hare, 1988; Sandelowski and Barroso, 2006), and subsequently, health-related topics were the initial focus of study as a result. However, social work has more recently contributed to its perspective (Aguirre and Bolton, 2014; Saini and Shlonsky, 2012), and over the last couple of years meta-syntheses on mental health topics have emerged (e.g., Mollard, 2014).

Evidence-based practice

Several reports have centered on mental health needs in the United States and have suggested the use of “evidence-based practice” (Knitzer, 1982; Cooper et al., 2008; President’s New Freedom Commission on Mental Health, 2003). Evidence-based practice (EBP) began in medicine in the early 1990s (Sackett et al., 1991) and was defined as the integration of the best available research knowledge with clinical expertise and consumer values. In other words, evidence-based treatment is a process of using research knowledge to make decisions about particular cases. The process of gathering the available research knowledge involves formulating specific questions, locating the relevant studies, assessing their credibility, and integrating credible results with findings from previous studies (Sackett et al., 1991).

The highest level of evidence is the systematic review and meta-analysis. A systematic review aims to comprehensively locate and synthesize the research that bears on a particular question. It uses organized, transparent, and replicable procedures at each step in the process (Littell et al., 2008). Meta-analysis involves the quantitative summary of quantitative studies that have been conducted in an area of knowledge. Meta-synthesis is the qualitative counterpart to meta-analysis, and both are embedded within the systematic review. The Joanna Briggs Institute (2014) recognizes the role of qualitative synthesis in the evidence-based process. The authors of the reviewer manual state that although such synthesis cannot address the effectiveness of interventions, it can offer key information about the impact of having a disorder and the types of intervention that can be helpful. “It also provides a means of giving consumers a voice in the decision-making process through the documentation of their experiences, preferences and priorities” (p. 16). Living with Mental Disorder: Insights from Qualitative Research will use meta-synthesis to discover the lived experience of those who suffer from mental health disorders, as well as their caregivers, in managing illness.

Limitations of meta-synthesis

Meta-synthesis is not without controversy (see Finlayson and Dixon, 2008; Jones, 2004; Saini and Shlonsky, 2012). A main limitation is that the meta-synthesist does not have access to the original data (i.e., the transcription of the taped conversations with the individuals that participated in the primary qualitative studies). Instead, he or she relies on the interpretation of these narratives by the author(s) of the particular research. Although researchers of the primary studies typically documented a process for gaining trustworthiness in terms of credibility, transferability, dependability, and confirmability (Lincoln and Guba, 1985), it is unknown the extent to which studies enacted these standards. We rely on the expertise, competence, and ethics of the researcher to carry out the research according to the methods outlined in writing.

Another argument against meta-synthesis is that combining studies together that have a variety of epistemologies, methodologies, methods, and analyses leads to an “apples” and “oranges” approach (Finlayson and Dixon, 2008; Jones, 2004). Despite these objections to meta-synthesis, reviewing comprehensively the qualitative research that has been done on a disorder, and attempting to synthesize some of the dominant findings is, in itself, a contribution, offering “a whole that is more than the sum of its parts.” The conceptualization articulated by social workers’ researchers Aguirre and Bolton’s (2014) involves each study changing “from an individual pocket of knowledge of a phenomenon into part of a web of knowledge about the topic where a synergy among the studies creates a new, deeper and broader understanding” (p. 283). They further argue that the use of various qualitative traditions and data collection methods aids in the process of triangulation, as does the fact that there are multiple perspectives represented across the primary studies.

Format

Each chapter in Living with Mental Disorder: Insights from Qualitative Research will address a particular mental health disorder and follow a similar format. First, a brief description of the disorder will be presented, including its prevalence. Second, the relevant quantitative literature, as well as any meta-syntheses that have already been conducted, will be reviewed. The bulk of each chapter will comprise the meta-synthesis that has been undertaken. A summation of the methodology is provided in Chapter 2; each chapter thereafter focuses on the results of the meta-synthesis, with supporting details about the primary studies included and the development of themes in tables. Discussion in each chapter compares and contrasts findings to the quantitative research conducted in the area and any relevant existing meta-syntheses. It will highlight the unique contributions of the qualitative results to practice and policy.

Audience

The use of meta-synthesis as a way to approach the field of mental disorders is unique and cutting-edge. It also offers readers a comprehensive review of qualitative research that has been conducted on mental disorders and covers a vast field, encapsulating it in one volume. The audience for Living with Mental Disorder includes graduate students from mental health disciplines (psychiatry, psychology, counseling, nursing, and social work). Practitioners in these fields are another potential audience. Living with Mental Disorder: Insights from Qualitative Research puts a human face on mental disorders, illuminates the suffering and the meaning that people make of their disorder, and offers insights into relevant and helpful service provision, all through a replicable and systematic research method. To conclude, Living with Mental Disorder will offer the following benefits to readers by:

• providing comprehensive reviews of the qualitative research on each topic of mental health;

• offering a synthesis of the qualitative findings in each area;

• conveying the lived experience of those suffering from mental health disorders and their caregivers;

• offering insights as to perceived contributing factors to mental illness, and what is helpful to recovery;

• offering insight about the strengths and resources that people employ when coping with mental illness;

• offering insights about service delivery systems;

• developing implications for practice and policy from the client perspective

References

Aguirre, R., and Bolton, K. (2014). Qualitative interpretive meta-synthesis in social work research: Uncharted territory. Journal of Social Work, 14, 279–294.

Beecher, B. (2009). The medical model, mental health practitioners, and individuals with schizophrenia and their families. Journal of Social Work Practice, 23(1), 9–20.

Bruffaerts, R., Vilagut, G., Demyttenaere, K., Alonso, J., Alhamzawi, A., Andrade, L. H., et al. (2012). Role of common mental and physical disorders in partial disability around the world. The British Journal of Psychiatry: The Journal of Mental Science, 200(6), 454. doi:10.1192/bjp.bp.111.097519.

Carter, S., and Little, M. (2007). Justifying knowledge, justifying method, taking action: Epistemologies, methodologies, and methods in qualitative research. Qualitative Health Research, 17, 1316–1328.

Cooper, J. L., Aratani, Y., Knitzer, J., Douglas-Hall, A., Masi, R., Banghart, P. L., et al. (2008). Unclaimed children revisited: The status of children’s mental health policy in the United States, Columbia University Academic Commons. Retrieved from http://hdl.handle.net/10022/AC:P:8917.

de Jonge, P., Alonso, J., Stein, D. J., Kiejna, A., Aguilar-Gaxiola, S., Viana, M. C., et al. (2014). Associations between DSM-IV mental disorders and diabetes mellitus: A role for impulse control disorders and depression. Diabetologia 57(4), 699–709.

Finfgeld, D. L. (2003). Metasynthesis: The state of the art – so far. Qualitative Health Research, 13(7), 893–904.

Finlayson, K. W., and Dixon, A. (2008). Qualitative meta-synthesis: A guide for the novice. Nurse Researcher, 15(2), 59–71.

Joanna Briggs Institute. (2014). The Joanna Briggs Institute Reviewers’ Manual. 2014 edition. University of South Adelaide: Joanna Briggs Institute.

Jones, M. (2004). Application of systematic review methods to qualitative research: Practical issues. Journal of Advanced Nursing, 48(3), 271–278.

Knitzer, J. (1982). Unclaimed children: The failure of public responsibility to children in need of mental health services. Washington, DC: Children’s Defense Fund.

Lincoln, Y., and Guba, E. (1985). Naturalistic inquiry. Newbury Park, CA: Sage Publications.

Littel, J., Corcoran, J., and Pillai, V. (2008). Systematic reviews and meta-analysis. New York: Oxford University Press.

Mojtabai, R., Stuart, E., Hwang, I., Eaton, W., Sampson, N., and Kessler, R. (2015). Long-term effects of mental disorders on educational attainment in the national comorbidity survey ten-year follow-up. Social Psychiatry and Psychiatric Epidemiology, 50(10), 1577–1591. doi:10.1007/s00127–015–1083–5.

Mollard, E. (2014). A qualitative meta-synthesis and theory of postpartum depression. Issues in Mental Health Nursing, 35, 656–663.

National Institute of Mental Health. (2012). Any mental disorder (AMI) among adults. Retrieved from www.nimh.nih.gov/health/statistics/prevalence/any-mental-illness-ami-among-adults.shtml.

National Institute of Mental Health. (2012). Any disorder among children. Retrieved from www.nimh.nih.gov/health/statistics/prevalence/any-disorder-among-children.shtml.

Noblit, G. W., and Hare, R. D. (1988). Meta-ethnography: Synthesizing qualitative studies. Newbury Park, CA: Sage Publications.

Nock, M. K., Green, J. G., Hwang, I., McLaughlin, K. A., Sampson, N. A., Zaslavsky, M., et al. (2013). Prevalence, correlates and treatment of lifetime suicidal behavior among adolescents: Results from the National Comorbidity Survey Replication – Adolescent Supplement (NCS-A). JAMA Psychiatry, 70(3), 300–310.

O’Neill, S., Posada-Villa, J., Medina-Mora, M. E., Al-Hamzawi, A. O., Piazza, M., Tachi-mori, H., et al. (2014). Associations between DSM-IV mental disorders and subsequent self-reported diagnosis of cancer. Journal of Psychosomatic Research, 76(3), 207–212.

Ormel, J., Petukhova, M., ...

Table of contents

• Cover Page
• Half Title page
• Series page
• Title Page
• Copyright Page
• Contents
• Tables
• Acknowledgments
• 1 Introduction and overview
• 2 Methodology
• Part I Disorders in children
• 3 The lived experience of parents of children with ADHD
• 4 The lived experience of parents of children with autism spectrum disorders
• 5 The lived experience of parents of youths with intellectual disability
• Part II Disorders in adults
• 6 The lived experience of people with bipolar disorder
• 7 The lived experience of people with schizophrenia
• 8 The lived experience of women with depression
• Part III Disorders in older adults
• 9 The lived experience of adults with intellectual disabilities Health, sexuality, and aging
• 10 The lived experience of adult child caregivers of parents with Alzheimer's disease
• 11 The lived experience of older adults with depression
• Index