People with schizophrenia experience hallucinations, emotional withdrawal, and cognitive impairment as well as a variety of comorbidities that lessen their health-related quality of life (HRQoL) (Barnes et al., 2012; WHO, 2016). HRQoL refers to ways in which health, illness, and medical treatment influence a person’s perception of functioning and well-being (Chan et al., 2007). Optimizing HRQoL is a goal set by leading national and international health organizations such as the Centers for Disease Control and the World Health Organization (Healthy People 2020, 2016; WHO, 2016). Recently, the National Institute of Nursing Research (NINR) 2016 draft strategic plan identified the improvement of QoL for individuals with chronic conditions as a current research priority (NINR, 2016). Mental health services focus increasingly on alternative and complementary approaches that take into account people’s well-being and functioning (Bouwmans et al., 2015). Recent efforts have focused on supporting patients and improving their QoL in the community (Nakamura, Watanabe & Matsushima, 2014). Gaining more information about HRQoL in groups of people with low perceived health could lead to improved treatments/strategies to improve their situations (CDC, 2016).Yet, the current methods used to define and measure QoL in serious mental illness represent a challenge for researchers and clinicians (Barnes et al., 2012). Authors have recently called for a need to assess HRQoL in people with schizophrenia (Montgomery et al., 2015) and to identify its influencing factors (Chou et al., 2014).
To date, most HRQoL studies in people with schizophrenia have identified discrete measureable factors that contribute to or detract from HRQoL in this population. Few studies, however, have explored what concerns persons with schizophrenia identify related to their HRQoL. In order to develop more comprehensive treatment strategies for people with schizophrenia, it is important to understand how they experience HRQoL from their own perspectives.
Although HRQoL concerns reported by people with schizophrenia have great value, low insight and impaired cognition in this population (Zhou et al., 2015) raise concerns about the accuracy of findings resulting from subjective interviews (Lysaker et al., 2005). An approach to address some of the concerns related to accuracy is to use multiple data sources to enhance the validity and reliability of qualitative analyses (Creswell, 2012).
Today researchers can use innovative technologies to advance science and influence clinical nursing practice. In recent years, researchers started to use computerized lexical analysis to count words in text data, to sort them into pre-defined word categories, and to investigate the topics most represented in the data (Firmin et al., 2016). Lexical analysis can further inform our understanding of commonly observed deficits in schizophrenia that are linked to emotions and social processes (Buck et al., 2015). Cognitive deficits are the most likely to impact QoL in people with schizophrenia (WHO, 2015). Since cognitive deficits include language dysfunction, further investigation of language patterns in people with schizophrenia is warranted.
Yet, few studies have used lexical analysis in people with schizophrenia (Buck et al., 2015; Minor et al., 2015). Most of previous studies implementing lexical analysis in this population have focused on comparing word use between people in the schizophrenia spectrum disorder and control groups. For example, people with schizoaffective disorder use more sadness words compared to the general population (Minor et al., 2015). Although computerized lexical analysis can conveniently and reliably analyze text data and relate word use to clinical variables, there is little work on how qualitative studies and computerized lexical analysis can inform each other and draw on their respective strengths (Firmin et al., 2016). To our knowledge, no study investigated the relationship between word use and reported HRQoL concerns in people with schizophrenia.
Research project
The overall purpose of this research project is to better understand HRQoL in people with schizophrenia to provide foundational information that can later be used to develop strategies to improve the HRQoL in this population. This project will occur in three phases:
1- We have conducted an integrative review with the aims to complete a formal assessment of the research of HRQoL in people with schizophrenia by examining its conceptual definitions, identifying its influencing factors, and identifying its methodological limitations. We sought to clarify our understanding of the concept, further support the validity of existing research, and direct future research.
The major findings were (1) that the conceptual ambiguity of HRQoL limits its ability to contribute to practice and research; (2) that there is strong evidence that HRQoL in people with schizophrenia is influenced by the severity of psychiatric symptoms, the presence of medical comorbidities, the impact of treatments, and opportunities for social contacts; (3) that there is moderate evidence that HRQoL in people with schizophrenia is influenced by the engagement in leisure and physical activity, the physical living setting of individuals, and the quality of interactions with health care providers; and (4) that the studies reviewed unequally spanned the population of people with schizophrenia, thus producing a selection bias. The manuscript that presents these findings will be submitted to SAGE Open Nursing journal.
2- We are currently conducting a qualitative descriptive study with the aim of describing common HRQoL concerns in persons with schizophrenia based on narratives in which they describe their life experiences. Qualitative descriptive methods as described by Sandelowski (2000) guide the analysis and are expected to provide a coherent and useful summary of events that could be relevant to practitioners and policy makers. Data for this study were drawn from a larger on-going study exploring language, thinking, and symptoms in people with schizophrenia. Twenty participants completed the Indiana Psychiatric Illness Interview survey (IPII), a semi-structured narrative interview in which they shared in as much details as possible their life stories.
For the current study, narratives are analyzed with conventional content analysis as described by Miles, Huberman, & Saldaña (2014). To begin the organization of the codes into meaningful categories, the research team used Ferrans’ (2005) HRQoL domains (biological function, symptoms, functional status, general health perceptions, and overall quality of life. A person-by-topic matrix (Miles, Huberman, & Saldana, 2014) was developed to provide a structure by which the data could be organized and displayed.
The analysis is currently in progress. Initial results suggest that participants are primarily concerned about their social dysfunction with family and friends, their symptoms, their occupational challenges, their health perception, their financial constraints, their lack of romantic relationships, and their uncertainty about the future. I anticipate that the final product will be a typology that identifies the major concerns of people with schizophrenia related to their HRQoL. The manuscript that describes this typology will be submitted to the Journal of the American Psychiatric Nurses Association.
3. Building on the findings from the qualitative descriptive study, I plan to design a mixed methods study that has the purpose of investigating the potential of computerized lexical analysis to assess HRQoL concerns reported by people with schizophrenia.
Although this study has not yet been designed, I anticipate to use a convergent mixed method design (Creswell, 2015) to integrate the qualitative and the quantitative findings. I anticipate (1) to quantitatize the qualitative descriptive data to display the relative importance of HRQoL concerns for each participant; (2) to translate the participants’ narratives into percentages of word use through computerized lexical analysis; and (3) to investigate the relationship between agreed-upon pairs (Qualitative HRQoL concern / lexical analysis category). The qualitative HRQoL concerns will be numerically represented and summarized in frequency tables displaying the relative frequencies of HRQoL concerns for each participant.
For the purpose of this study, Linguistic Inquiry and Word Count (LIWC) will be used because it provides more nuanced categories of words compare to other software and because of its prior use in the schizophrenia population (Buck & Penn, 2015). The LIWC2015 (Pennebaker,, 2015), examines words in a text file and matches each word to a dictionary of more than 6400 word stems, organized into 90 categories.
A joint display will merge HRQoL concerns and their associated relative frequencies, as well as the agreed upon matching LIWC categories and their associated percentage of word use. (e.g., social functioning 20% / social words 15%). I anticipate that the more overlap there is between the description of HRQoL concerns (e.g., negative symptoms, work related concerns, social functioning) and the description of their matched LIWC categories (e.g., negative words, achievement, social words), the more strongly HRQoL concerns will be related to LIWC categories.
Conclusion
By advancing the understanding of HRQoL in people with schizophrenia, this project advocates for the needs of this marginalized group. Results could help identify additional targets and avenues for intervention and lead to comprehensive strategies for improving the lives of all people with schizophrenia. Today, nurse researchers are well placed to integrate traditional qualitative methods and innovative technologies to advance the science of HRQoL in people with schizophrenia and to influence clinical practice.
Recommendations for future research include (1) developing a theory that connects the biological, psychological, and social determinants of HRQoL in schizophrenia and (2) testing the feasibility of computerized lexical analysis as a supplemental means to assess HRQoL concerns in clinical practice.
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