ORAL HEALTH NURSING IN PSYCHOSIS CARE From Knowledge to Action SONJA ANNETTE KUIPERS
Oral Health Nursing in Psychosis Care From Knowledge to Action Sonja Annette Kuipers
Copyright 2024 © Sonja Kuipers All rights reserved. No parts of this thesis may be reproduced, stored in a retrieval system or transmitted in any form or by any means without permission of the author. ISBN 978-94-6506-296-9 Provided by thesis specialist Ridderprint, ridderprint.nl Printing: Ridderprint Layout and design: Erwin Timmerman, persoonlijkproefschrift.nl
Oral Health Nursing in Psychosis Care From Knowledge to Action Proefschrift ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen op gezag van de rector magnificus prof. dr. ir. J.M.A. Scherpen en volgens besluit van het College voor Promoties. De openbare verdediging zal plaatsvinden op donderdag 28 november 2024 om 16.15 uur door Sonja Annette Kuipers geboren op 11 juni 1970
Promotores Prof. dr. S. Castelein Prof. dr. T.C. Boonstra Copromotor Dr. L. Kronenberg Beoordelingscommissie Prof. dr. E.J. Finnema Prof. dr. G.H.M. Pijnenborg Prof. dr. B. Van Meijel
“So never lose an opportunity of urging a practical beginning, however small, for it is wonderful how often in such matters the mustard-seed germinates and roots itself” -Florence Nightingale (Notes on Nursing, what it is, and what it is not)-
Table of contents Chapter 1 General introduction 9 Part I Experiences of oral health in psychosis Chapter 2 Oral health experiences and needs among young adults after a first episode psychosis: a phenomenological study. 27 Chapter 3 Risk factors and oral health-related quality of life: a casecontrol comparison between patients diagnosed with a psychotic disorder (first episode) and people from the general population 51 Part II State of the art Chapter 4 Oral health interventions in patients with a mental health disorder: a scoping review with a critical appraisal of the literature 77 Part III The development of a supportive oral health nursing intervention Chapter 5 A human-centered design approach to develop oral health nursing interventions in patients with a psychotic disorder 125 Chapter 6 The development of an oral health nursing tool in patients with a psychotic disorder: a human-centered design with a feasibility test 173 Chapter 7 General discussion 223
Chapter 8 Summary Samenvatting in het Nederlands (Summary in Dutch) 243 250 Dankwoord (Acknowledgements) Curriculum Vitae Publications & Presentations 258 262 263
Chapter 1 General introduction
11 General introduction Introduction This thesis is predicated on a specific case that served as the impetus for further investigation into the role of mental health (MHNs) in oral healthcare with respect to patients diagnosed with psychotic disorders. One day, Maaike, a mental health nurse specialist, arrived at the department and encountered a young man of 22 years old, Joshua. Joshua was admitted due to a psychotic episode characterized by hallucinations and delusions, significantly impacting his functioning, including self-care. Maaike noticed that Joshua appears to have neglected his dental hygiene for an extended period. She observed that he has an unkempt set of teeth, and Joshua exhibited halitosis and conversed with his hand covering his mouth. When she raised this issue with a mental health nurse at the department, the response was as follows: “Oral health is not my responsibility as a mental health nurse; the responsibility lies with the client themselves. We focus on the improvement of mental health.” Maaike was surprised by this. She did not concur with these MHNs and raised the issue for discussion during a team meeting, which was attended by all MHNs. During this team meeting, it quickly became apparent that this MHN was not alone in her perspective, but rather, a significant number of the nurses shared this opinion. In light of the diverse viewpoints, it was imperative to initiate a dialogue concerning the responsibilities of a MHN in the realm of dental care. She suggested that additional research was necessary. Motivated by her curiosity, she assigned a student to undertake an initial inquiry by means of an exploratory study. The scenario in our case is not unique. In the following introduction, a general background describes the oral health of people with a psychotic disorder and the role of MHNs, as well as the research questions explored within this thesis. 1
12 Chapter 1 Contextualizing the thesis Psychosis Individuals with psychotic disorders encounter challenges across various domains of life. In psychopathology, a psychotic disorder is considered as one of the most severe mental states [1]. During a period of psychosis, people’s thoughts and perceptions can be disturbed, and their distinct experiences often lead to feelings of being misunderstood [2]. Psychotic symptoms are, for instance, hallucinations and delusions [3]. Hallucinations are delineated as “perception-like experiences that manifest without an external stimulus, marked by their vividness, clarity, and the intensity of normal perceptions, while being beyond voluntary control” [4]. Delusions are defined as “inflexible beliefs resistant to change despite contradictory evidence, which are not endorsed by others” [2]. Both hallucinations and delusions can be symptoms that are part of severe, debilitating mental disorders, such as psychotic disorder, yet they may also appear in transient, less severe, or non-distressing forms within the general population, independent of psychiatric illness [5]. Psychotic disorders tend to emerge in late adolescence and young adulthood [6,7]. Epidemiological studies indicate that nearly 75% of first onsets occur before the age of 40 [7]. Young males have a higher risk of psychotic disorders [6]. Adolescence and young adulthood represent pivotal periods for the emergence of psychotic disorders, underscoring the critical significance of these developmental periods [8]. Because young people in this developmental phase still have much to learn, it is essential that they are guided and coached through it. This is because they are in a vulnerable period, and it is crucial that they receive specialized and appropriate guidance and support in which engagement in all social roles and the prevention of the chronic progression of psychosis are key [9]. MHNs are often tasked with educating, guiding, and supporting vulnerable patients and families and thereby are well positioned to address problems that occur during adolescence and young adulthood [10]. This thesis started with a focus on patients with first-episode psychosis. It is well known that psychotic experiences exist on a continuum, ranging from mild, attenuated psychotic experiences in the non-clinical population to clinically significant psychotic symptoms in individuals with fully developed psychotic disorders [11]. There are various stages within a psychotic disorder. In this dissertation, the focus
13 General introduction has primarily been on individuals with first-episode psychosis (FEP). Of all patients with FEP, one-third of individuals recover after FEP; another relapse occurs in onethird of individuals, but these people also usually function well; the final one-third have a more chronic course and are considered people with severe mental illness [5,9]. Globally, the yearly incidence of psychotic disorders is about 15 per 100,000 inhabitants, but this differs geographically between countries and can be based on the urban environment, migration, or drug and alcohol abuse [12,13]. The prevalence of people who meet the diagnostic criteria for a psychotic disorder according to the DSM-5 is around 1.5 to 3.5%, and a significantly larger number experience at least one psychotic symptom in their lifetime [13]. The recent literature shows that, until now, antipsychotic medication has been the cornerstone of treatment since its introduction in the 1960s [14]. Guidelines for psychosis care [5,9] described that the focus of treatment is directed toward symptom management (clinical recovery and medical model). However, recent psychosis care guidelines have adopted a broader understanding of recovery. They provide a neatly organized classification of both pharmacological and non-pharmacological treatments [5,9]. Recovery In psychiatry, the traditional approach involves working from the medical model. This model fundamentally suggests that if an individual presents with complaints, a physician addresses these complaints by clarifying the underlying symptoms. Currently, a paradigm shift towards recovery-oriented care is evolving. Recovery extends beyond merely the absence of clinical symptoms. Recovery in mental healthcare encompasses three domains: clinical, societal, and personal recovery [15]. Clinical recovery in psychosis stems from a perspective with broad symptoms: positive symptoms (i.e., hallucinations), negative symptoms (i.e., demotivation), and cognitive symptoms. All these symptoms might be reflected in the oral health issues of people with psychosis: e.g., a lack of motivation to act, neglecting to consider the issue, or being preoccupied with other matters. The recovery of these clinical symptoms implies a state in which these symptoms are eliminated [16]. Societal recovery involves persons who can fulfil societal roles (i.e., a partner, parent, employee). Often, patients with a psychotic disorder are limited with respect to 1
14 Chapter 1 their participation in society, and patients show impairments in several challenging everyday activities (i.e., informal and formal relationships) [17]. Oral health might be related to societal recovery, and poor oral health can undermine self-esteem and confidence and discourage social engagement. It might also hinder speech and communication, complicating social interactions [18]. Given society’s emphasis on appearance, including oral aesthetics, visible oral health issues can expose individuals to stigma, discrimination, and social isolation and, in this way, obstruct social recovery. Personal recovery involves the development of new meaning and purpose in one’s life as one recovers beyond the catastrophic effects of a mental illness. Personal recovery has a focus beyond clinical and societal recovery, and it has been defined as ‘a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills, and/or roles’ and ‘a way of living a satisfying, hopeful, and contributing life even within the limitations caused by illness’ [19]. Oral health problems can significantly impact an individual’s self-image, self-esteem, and mental well-being. Concerns about dental appearance can lead to social withdrawal, hindering the process of personal recovery. With respect to social withdrawal, people do not make connections, which can affect an individual’s hope for the future and how they view themselves (identity); it may also impact an individual’s sense of meaning and empowerment [20]. Another movement strives to improve personal well-being rather than being focused on symptoms, and it comprises an altered perspective on (positive) health. The concept of health is defined as follows: “Health as the ability to adapt and self-manage, in light of the physical, emotional and social challenges of life“ [21]. In this concept, health is no longer seen as the absence or presence of disease (such as in the medical model) but as the ability of people to deal with (changing) physical, emotional, and social life challenges and manage their own lives. The increasing focus on recovery and positive health might enable mental MHNs to integrate oral health more effectively into mental healthcare as it provides a broader view of (mental) health. Holistic nursing Health promotion is not a new concept. Thousands of years ago, Hippocrates recognized the power of lifestyle and prevention as medicine when he said, “If we could give every individual the right amount of nourishment and exercise, not too little and not too much, we would have found the safest way to health” [22]. Little
15 General introduction progress was made from then until the 1900s. The basis of current nursing practices can be traced to the 19th century when Florence Nightingale characterized the profession of nursing as follows: “Medicine, so far as we know, assists nature to remove the obstruction but does nothing more. What nursing must do is to put the patient in the best condition for nature to act upon him” [23]. This principle has been crucial in contemporary nursing. Subsequent perspectives, such as those of Virginia Henderson [24], Dorothea Orem [25], and Mieke Grypdonck [26], adopted an emancipatory and integrated viewpoint in their approach to nursing, centring on the human aspect and focusing on the repercussions of illnesses or conditions. Moreover, these perspectives address the impact of illnesses or conditions on daily functioning and an individual’s self-perception. The professional profile of nurses is based on a holistic view of care, which includes the utilization of knowledge in anatomy, physiology, (psycho)pathology, and psychosocial processes. This holistic process entails also considering prevention. Nurses must make every effort to improve the quality of care and quality of life of patients [27]. The Bachelor of Nursing 2030 educational profile can be found on the Professional Profile for Nurses [28]. In the new BN2030 educational profile, there is a shift in the focus of nursing work from predominantly curative tasks to distinctly recognizable preventive tasks. Lifestyle interventions are a part of prevention, and they are not new to nursing [23]. A healthy lifestyle also includes good oral health; oral health plays a pivotal role in advancing positive overall health outcomes [10]. However, it is not clear how MHNs think about oral health and what MHNs need in interventions to support patients with psychotic disorders in maintaining their oral health. Another important part of prevention is risk assessment. Although risk assessment and early detection are part of clinical reasoning, the case of Joshua demonstrates that the integration of physical health issues within psychiatry has not yet become standard practice. Here, the NANDA (North American Nursing Diagnosis Association) risk diagnosis can be used (such as risk for impaired oral mucous membranes (domain 11, class 2, code 00247))[28]. Risk diagnoses are clinical judgments that conclude that a problem does not exist, but the presence of risk factors indicates that a problem is likely to develop over time unless nurses intervene [28]. Readiness diagnoses are diagnoses referring to a specific category of nursing diagnoses employed when an individual or group demonstrates motivation and willingness to enhance their health status, reduce risk factors, or optimize wellness (such as readiness for enhanced self-care (domain 4, class 5, code 00182)). To effectively 1
16 Chapter 1 establish a precise nursing diagnosis, it is crucial to undertake a thorough collection of data followed by an analytical assessment of this information. This methodological approach is vital for accurately reflecting the patient’s current health conditions and facilitating the formulation of appropriate intervention strategies. MHNs often experience hesitation in addressing oral care issues in patients with psychotic disorders. Therefore, it is crucial to explore what oral health interventions are available for MHNs. Oral health in mental health Patients with mental illness have overall poor physical health [29]. The importance of attention to oral healthcare in patients diagnosed with a psychotic disorder is described and is poor in patients with SMI [30]. This indicates the importance of prevention at an earlier stage, such as during first-episode psychosis (FEP). Therefore, this research study starts with a primary focus on oral health in patients after FEP. A study among outpatients in Sweden who have been diagnosed with schizophrenia showed that a decrease in mental health is associated with an increased need for dental care [31]. This underscores the importance of thoroughly assessing the experiences and needs of patients with FEP. Population surveys show that impaired mental health is associated with an increased need for oral healthcare [31–34]. These studies also indicated that people with enduring mental health problems make less frequent planned visits to the dentist and report a greater number of missing teeth than the general population. Kilbourne et al. [32] demonstrated that 61% of patients diagnosed with psychotic disorders reported poor oral health and that over 34% of patients stated that oral health problems made it difficult to eat. Poor oral health (gum disease and tooth loss) impacts daily living (e.g., eating, social acceptance, self-esteem, feeling comfortable) and is also associated with chronic disorders: for example, diabetes; high blood pressure; and respiratory disease in patients diagnosed with a severe mental illness, such as psychosis [33–35]. A large cohort study (>one million participants) showed that patients with poor oral health have an increased risk of coronary heart disease, and smoking can be a confounder [36]. This finding shows that oral care is an important part of general health in patients diagnosed with a psychotic disorder. Risk factors for poor oral health are also known, and inferences can be carried out from syntheses of the literature. These risk factors include the following: the type and stage of mental illness; a lack of motivation and low self-esteem; a lack of perception with respect to oral health problems; lifestyle (e.g., smoking, drinking alcohol, substance use,
17 General introduction eating and drinking sugary food/drinks) and the ability to sustain self-care and dental attendance; socio-economic factors (e.g., low income, low education); and the oral side effects of medication [35,37,38]. These risk factors significantly impact oral health, as well as quality of life. In particular, given that patients with psychotic disorders possess numerous risk factors, it is imperative that nurses allocate attention to this matter. In practice, nurses find it challenging to initiate action when it comes to oral health, in part because they are unsure about the appropriate interventions [29,39]. This situation may arise not only because mental health services primarily focus on symptoms but also because nurses’ reason from a broad perspective, and risk and health-promoting diagnoses are inadequately applied. This highlights the importance of analyzing existing nursing interventions focused on oral care and developing appropriate interventions in addition. Hence, it is crucial to adopt a co-creative approach in developing interventions. This means choosing a design where MHNs actively participate, provide feedback, and engage in the development of prototypes to ensure that the interventions are relevant and effective. Therefore, we opted for a human-centered and design-oriented approach [40–42]. Oral health in the general population Research among younger people in the Netherlands, conducted by TNO (2017), reveals that the oral health of 5-year-olds has improved in recent years. However, for the other age groups studied (11-, 17-, and 23-year-olds), oral health has either stagnated or deteriorated. Moreover, disparities in oral health exist across all age categories between high- and low-socioeconomic-status (SES) groups, with the low-SES group exhibiting poorer oral health. It is also notable that youths with a migration background have worse oral health and dental behaviours. Furthermore, the significant increase in (erosive) dental wear is concerning: one-fifth of 17 year olds and more than half of 23 year olds show wear down to the dentin [43]. The reasons provided for this include not brushing their teeth twice daily (in 11-yearolds); among the 17-year-olds, there is a prevalence of significant dental plaque and pockets, as well as damage resulting from the consumption of acidic foods and beverages. In 23-year-olds, a high incidence of cavities and periodontal pockets is observed, along with a tendency to delay treatment due to financial considerations. Although this pertains to the general population in the Netherlands, the findings of this study highlight the importance of exploring measures to enhance preventive health behaviours. The points highlight that young adolescents in the general population also suffer from oral health issues. We have contemplated whether this 1
18 Chapter 1 issue is pervasive among adolescents at large or disproportionately affects young individuals with FEP. Oral-health-related quality of life (OHRQoL) OHRQoL is a multidimensional construct that includes a subjective evaluation of the individual’s oral health, functional well-being, emotional well-being, expectations and satisfaction with care, and sense of self [44]. OHRQoL is an integral part of general health and well-being. In fact, it is recognized by the World Health Organization (WHO) as an important segment of the Global Oral Health Program (2003) [44,45]. It encompasses the physical, psychological, and social aspects of oral health and how they affect a person’s ability to eat, speak, smile, and engage in social interactions. OHRQoL considers subjective experiences and perceptions of oral health rather than focusing solely on clinical indicators. It recognizes that oral health issues can have a significant impact on a person’s self-esteem, social interactions, and overall happiness. OHRQoL takes a holistic approach to oral health, recognizing that it extends beyond the mere absence of disease or the presence of good oral health. By considering the impact of oral health conditions on an individual’s daily activities, social interactions, and psychological well-being, healthcare providers can tailor treatments and interventions to address specific patient needs and goals. By considering OHRQoL, MHNs can provide more comprehensive and patient-centered care; promote oral health as an integral part of overall well-being; and enhance an individual’s quality of life by addressing the functional, psychological, and social aspects of oral health. However, it is established that patients with SMI have poor OHRQoL [44], but these experiences have never been investigated in patients with FEP. Additionally, it is crucial to determine whether OHRQoL is also dependent on risk factors. Outline of this thesis This thesis consists of three parts. In part 1, the aim is to explore patients’ experiences in oral health, risk factors, and oral health-related quality of life. In part 2, the body of research will be examined to provide an overview of current oral health interventions for MHNs. In part 3, the main aim is to develop oral health nursing interventions and study their practical feasibility in human-centered designs. The main research questions are described for each part:
19 General introduction Part I. Experiences of oral health in psychosis • How have patients found their oral health after FEP, and what needs do they have regarding oral health (Chapter 2)? • Which oral health risk factors do patients with a first-episode psychosis experience? How do they perceive their oral health-related quality of life compared to individuals without a history of psychotic disorder (Chapter 3)? Part II. State of the art • Which oral health interventions aiming to improve oral health in patients with a mental health disorder are described in the existing literature (Chapter 4)? Part III. The development of a supportive oral health nursing intervention • What are the attitudes, barriers, needs, and suggestions for the interventions of MHNs in providing support for maintaining and increasing oral health in patients with a psychotic disorder (Chapter 5)? • Which supportive tool can be developed for MHNs regarding the recognition of potential oral health problems in patients with psychotic disorders (Chapter 6)? • How feasible is the implementation of the developed supportive tool for MHNs in the context of care for patients with a psychotic disorder (Chapter 6)? 1
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23 General introduction 38. McCreadie, R.G.; Stevens, H.; Henderson, J.; Hall, D.; McCaul, R.; Filik, R.; Young, G.; Sutch, G.; Kanagaratnam, G.; Perrington, S.; et al. The Dental Health of People with Schizophrenia. Acta Psychiatr. Scand. 2004, 110, 306–310, doi:10.1111/j.1600-0447.2004.00373.x. 39. Happell, B.; Scott, D.; Platania-Phung, C. Perceptions of Barriers to Physical Health Care for People with Serious Mental Illness: A Review of the International Literature. Issues Ment. Health Nurs. 2012, 33, 752–761, doi:10.3109/01612840.2012.708099. 40. Brest, P.; Roumani, N.; Bade, J. Problem Solving, Human-Centered Design, and Strategic Processes 2015. 41. Hoover, C Human-Centered Design vs. Design-Thinking: How They’re Different and How to Use Them Together to Create Lasting Change 2018. 42. Pruitt, J.; Grudin, J. Personas: Practice and Theory. In Proceedings of the Proceedings of the 2003 conference on Designing for user experiences; ACM: San Francisco California, June 6 2003; pp. 1–15. 43. Schuller, A.A.; Vermaire, E.; Kempen, I. van; Dommelen, P. van; Verrips, E. Signalement Mondzorg 2018. Zorginstutuut Ned. 2018. 44. Sischo, L.; Broder, H.L. Oral Health-Related Quality of Life: What, Why, How, and Future Implications. J. Dent. Res. 2011, 90, 1264–1270, doi:10.1177/0022034511399918. 45. Petersen, P.E. The World Oral Health Report 2003: Continuous Improvement of Oral Health in the 21st Century - the Approach of the WHO Global Oral Health Programme: The World Oral Health Report 2003. Community Dent. Oral Epidemiol. 2003, 31, 3–24, doi:10.1046/j..2003.com122.x. 1
Part IExperiences of oral health in psychosis
Chapter 2 Oral health experiences and needs among young adults after a first episode psychosis: a phenomenological study. Kuipers, S. A., Castelein, S., Malda, A., Kronenberg, L., & Boonstra, N. (2018). Oral health experiences and needs amongst young adults after a first-episode psychosis: A phenomenological study. Journal of Psychiatric and Mental Health Nursing, 25(8), 475-485. https://doi.org/10.1111/jpm.12490
28 Chapter 2 Abstract Introduction: Oral health affects quality of life, self-esteem, physical health, and daily functioning. Treatment guidelines on patients after FEP recommend interventions, but clinical interventions are lacking. No research on the experiences of young adults’ oral health after FEP has been conducted. Aims: This study aims to explore the lived experiences and needs of patients after FEP with regard to their oral health. Design and Methods: Single-centre phenomenological study using open interviews (N=30). Data were analysed using the Colaizzi method. Results: Patients reported oral health problems since their FEP. The problems that patients encountered were dental care in general (e.g., a lack of awareness), risk factors (e.g., substance use, poor diet, and financial problems), overall experiences with dentists/dental hygienists, and the gap between needs and interventions. Discussion: There is a lack of awareness among patients after FEP about oral health while patients are not able to adequately attend to their oral health and patients have high burden on this topic. Implications for mental health nursing: To bridge the gap between patients’ needs regarding oral health, the awareness of patients and mental health professionals, should be heightened, and patients should be better supported by mental health professionals.
29 Oral health experiences and needs among young adults after a first episode psychosis Introduction The importance of attention to oral health care in psychiatric patients diagnosed with severe mental illness (SMI) is well described and has been shown to be poor [1]. A decrease in mental health is associated with an increased need for dental care [2]. Kilbourne et al. [3] demonstrate that 61% of patients diagnosed with SMI reported poor oral health and that over 34% of patients stated that oral health problems made it difficult to eat. Poor oral health impacts daily living (e.g., eating, social acceptance, self-esteem, feeling comfortable) and is also associated with chronic disorders, e.g., diabetes, high blood pressure, respiratory disease, and coronary heart disease in patients diagnosed with SMI [4,5]. Kisely [6] states that poor oral health in this group also contributes to avoidable admissions to a general hospital and that dental conditions are a common cause of acute avoidable admissions. This finding shows that oral care is an important part of general health in patients diagnosed with SMI (and a chronic disorder, e.g., diabetes, high blood pressure, respiratory disease, and coronary heart disease). Risk factors for poor oral health are also known, and inferences can be made from syntheses of the literature. These risk factors include the type and stage of mental illness; a lack of motivation and low self-esteem; a lack of perception of oral health problems; lifestyle (e.g., eating, substance use) and the ability to sustain self-care and dental attendance; socio-economic factors (e.g., low income or low education); and the oral side effects of medication [6–8]. Rationale Awareness of and support regarding oral health for patients diagnosed with SMI are of great importance. To prevent poor oral health, with all its consequences, it would be of great interest to intervene in an earlier stage, such as the first episode psychosis (FEP). However, no research on the experiences of young adults’ oral health after FEP has been conducted. The British Society for Disability and Oral Health [8] has published recommendations for oral health care for people with mental health problems, but the suggestions were not practical. In the Netherlands, multidisciplinary guidelines for patients after FEP describe that “during somatic screening it is important to check oral health” (8, p.140) and “during lifestyle screening it is important to check oral health hygiene” [9]. Clinical interventions are lacking, and therefore, there is a sig2
30 Chapter 2 nificant risk that nothing will be taken. As Crowe [10] states, “If mental health nursing practice is a patient-centred partnership, as many of our nursing standards suggest, then nursing’s focus should be on the patient’s experience rather than the psychiatric diagnosis with which the experience is attributed. Mental health nurses need to turn to service users to learn how best to help” (p.125). Research question: The research question in this study was the following: How do patients experience their oral health after FEP, and which needs regarding their oral health do they have? Aim: The current paper aims to gain insight into the lived experiences and needs of young adults after FEP regarding their oral health using an interpretive phenomenological approach. Study design Theoretical framework In this study, a descriptive, interpretative phenomenological approach was used to gain insight into the lived experiences portrayed by the patients. The first aim of this study is to explore the experiences and needs of oral health behaviour among patients between 18 and 35 years after FEP. Participant selection The study population consisted of patients after FEP treated by the Early Intervention Service of the Friesland Mental Health Care Services in the Netherlands. Patients were asked by their psychiatric nurses to participate and were approached face to face. A convenience sample based on availability and willingness to participate was assembled. In this study, thirty patients between 18 and 35 years were included. Patients in a period of “florid” psychosis were excluded from the interviews.
31 Oral health experiences and needs among young adults after a first episode psychosis Data collection The data were collected through in-depth and open-ended interviews between April and October 2016. During the interviews, an aide memoire in the form of a list of relevant topics was used to provide flexibility during the interviews (table 1.). The interviews started with a broad and open-ended question to address lived experiences: “What does oral health mean to you, how do you report your oral health, and do you have needs to improve it?” Follow‐up questions were then asked based on the information provided by the patients. Due to the characteristics of the interview approach used, issues were less standardized, and the patients had the opportunity to provide their perspectives. Table 1. An aide memoire Oral health Is defined as: “Is multi-faceted and includes the ability to speak, smile, smell, taste, touch, chew, swallow and convey a range of emotions through facial expressions with confidence and without pain, discomfort and disease of the craniofacial complex. Oral health is a fundamental component of health and physical and mental wellbeing. It exists along a continuum influenced by the values and attitudes of individuals and communities; Reflects the physiological, social and psychological attributes that are essential to the quality of life; Is influenced by the individual’s changing experiences, perceptions, expectations and ability to adapt to circumstances” (P3)[11] Patients experience Patients diagnosed with SMI report many problems, e.g.: eating, social acceptance, self-esteem, feeling comfortable [3] Riskfactors Risk factors for poor oral health in patients diagnosed with SMI were ,e.g., type and stage of mental illness; a lack of motivation and low self-esteem; a lack of perception of oral health problems; lifestyle (e.g., eating, substance use, smoking, and nutrition) and the ability to sustain self-care and dental attendance; socioeconomic factors (e.g., low income or low education); and the oral side effects of medication [6–8] The interviews were conducted by nursing students (bachelor students in the final phase of their study) under the supervision of a research team (SK. and NB.). After written informed consent was given, the interviews were documented using a voice recorder. The duration of the interviews was between 30 and 90 minutes. The iterative process of sampling, data collection, and analysis was continued until data saturation was reached; no new codes were found in the last five interviews. 2
32 Chapter 2 Analysis Data analysis The research team, consisting of two experienced nurses, analysed the data and coded them independently. In the current study, we used Colaizzi’s seven-step phenomenological method [12]. Bracketing by maintaining a reflective log file was common in the phase of analysing the data. During this phase, peer debriefing was conducted following each step in the coding process. The data discovered were compared with the literature to substantiate our findings. Each theme was described in the findings, and notable quotes were used to clarify the findings. Table 2 provides a short summary of the analysis technique of Colaizzi’s strategy used in this study. Ethical considerations For this study, the research proposal was submitted to the ethics committee (Leeuwarden, the Netherlands) although formal approval was unnecessary. The committee confirmed the approval, registered under no. RTPO979a. Informed consent was given in writing: the principle of justice was followed by providing oral and written information about the research, confidentiality, voluntary participation, guaranteed anonymity, the possibility to quit participation at any time, and consent to the audio recordings. The recordings of the interviews are retained, according to the international safety regulations for the storage of data, at the NHL/Stenden University of Applied Sciences and are accessible only to the researchers. Assessing the rigour of this study: Trustworthiness and authenticity There were four criteria to establish trustworthiness: credibility, transferability, dependability and confirmability [13,14]. Establishing the credibility of findings entails both making every effort to ensure that research is carried out according to the canons of good practice and, where appropriate, submitting the research results to the patients who were studied for confirmation that the researcher had correctly understood their world. This technique is referred to as respondent validation [14]. In this research, the research group fed back (in Dutch) to the interviewees its impressions and findings of the discussions. In this study, transferability was strengthened by comparing the data discovered to the literature on this subject to substantiate the findings. Dependability requires trying to ensure that complete records and an audit trail of all phases of the research process were kept [14]. It should be evident that personal values or ideological inclinations have not been
33 Oral health experiences and needs among young adults after a first episode psychosis allowed to sway the performance of the research and the findings deriving therefrom [14]. In this study, two members of the research team (SK. and NB.) led and monitored this research and gave feedback during the study. Table 2. A summary of the steps by using Colaizzi’s strategy as employed in this study[12] Step What and result Step 1 Obtain an overview of the data Interviews were transcribed verbatim Read and re-read to gain a feeling for and to make sense of the patients’ lived experiences regarding oral health Step 2 Extracting significant statements - Significant statements of the participants experiences, meanings and needs were extracted - Coding in Atlas TI V 7.5.12 software package Step 3 Compare and discussion Compared the original quotes with the formulated meanings to achieve consistency We illuminated experiences and meanings that were hidden in various contexts of the phenomenon. Minimal differences were found within the research group, and there was a discussion to reach a solution, when necessary 458 Quotes classified into 458 significant meanings Step 4. Categorize Categorizing the meanings into codes that reflect a vision to form a code 40 Codes were obtained from 458 meanings 40 Codes were incorporated into 5 themes Step 5. Describe Provided a sufficient description of the experiences, meanings and needs of the patients. The formulated themes were integrated in a description of the phenomenon under study Step 6. Clear relationships Generate clear relationships between the themes, it also included eliminating some ambiguous structures that weaken the whole description Step 7. Validation “Member check technique” was used to validate the findings within participants Discussion about participants feedback and changes were incorporated. Guba and Lincoln [15] suggest criteria of authenticity, and these standards raise a wider set of issues. This research fairly represents the experiences, and needs of the patients, and every effort was made to serve the patients. The ontological authenticity of this study can be formally assessed upon completion, but in this regard, an indication was gained from the responses to the feedback sessions, 2
34 Chapter 2 which indicated that the patients felt they had increased their awareness and understanding of the phenomena. Findings Interviews were carried out between April and October 2016. The themes of oral health experiences emerged from an analysis of approximately 23 hours of audio (range: 30-90 minutes), transcribed in 146 pages, from 30 patients after FEP who ranged in age from 18 to 35 years (mean 26.9). Table 3 illustrates the participant demographics and their medications (in groups) and diagnoses. Most frequent reported antipsychotics were Olanzapine (N=13), Risperidone (N=5), Aripiprazole (N=4) and Sulpiride (N=2). Within the theme of oral health experiences and needs, we further categorized and coded the data with regard to dental care in general, risk factors, the financial situation, experiences and needs for interventions of the participants. These themes were inextricably linked. Table 4 gives an example of the phenomenological process.
35 Oral health experiences and needs among young adults after a first episode psychosis Table 3. Participant demographics and self-reported medications and diagnoses Participant Gender Age group Residential status Marital status Self-reported medications Diagnoses 1 Female 18-21 With parents Not married - FEP*, PTSS†, Drug abuse 2 Male 22-25 Sheltered living Not married Antipsychotic medication FEP, Asperger, PDD‡, Drug abuse 3 Male 18-21 Sheltered living Not married - FEP, ADD§, Drug abuse 4 Male 18-21 Sheltered living Not married - FEP, Drug abuse 5 Male 18-21 Sheltered living Not married Antipsychotic medication, Anti-Anxiety Medication FEP, Drug abuse 6 Female 22-25 Sheltered living Not married Antipsychotic medication FEP 7 Male 31-35 Sheltered living Not married Antipsychotic medication FEP, ADHD¶, Drug abuse 8 Male 26-30 Sheltered living Not married - FEP, Drug abuse 9 Male 26-30 Sheltered living Not married Antipsychotic medication, Anti-Anxiety Medication FEP, Drug abuse 10 Male 22-25 Sheltered living Not married Antipsychotic medication FEP 11 Male 26-30 With partner Living together Antipsychotic medication, antidepressants, Anti-Anxiety Medication FEP, Drug abuse 12 Male 22-25 Single Not married Antipsychotic medication FEP, Drug abuse 13 Female 26-30 With parents Not married Antipsychotic medication FEP, Drug abuse 14 Female 26-30 With parents Not married Antipsychotic medication FEP 15 Female 31-35 With partner Not married Antipsychotic medication FEP 16 Male 31-35 Single Not married Antipsychotic medication FEP, Drug abuse 17 Female 22-25 Sheltered living Not married Antipsychotic medication FEP, Drug abuse 2
36 Chapter 2 Table 3. Participant demographics and self-reported medications and diagnoses (continued) Participant Gender Age group Residential status Marital status Self-reported medications Diagnoses 18 Male 26-30 Sheltered living Not married Antipsychotic medication FEP, Drug abuse 19 Female 31-35 With partner Living together Antipsychotic medication FEP 20 Female 31-35 Single Not married Antipsychotic medication FEP 21 Male 31-35 Single Not married Antipsychotic medication FEP 22 Male 22-25 Sheltered living Living together Antipsychotic medication FEP, Drug abuse 23 Female 22-25 Single Not married Antipsychotic medication, antidepressants, Mood Stabilizer FEP, Drug abuse 24 Male 31-35 Sheltered living Not married Antipsychotic medication FEP, Drug abuse 25 Female 22-25 Single Not married Antipsychotic medication FEP, Drug abuse 26 Male 31-35 With parents Not married Antipsychotic medication, AntiAnxiety Medication FEP, Drug abuse 27 Male 26-30 Sheltered living Not married Antipsychotic medication FEP, Drug abuse 28 Male 22-25 Sheltered living Not married Antipsychotic medication, mood stabilizer FEP, Bipolar, Drug abuse 29 Female 26-30 With partner Living together mood stabilizer FEP, Bipolar 30 Female 31-35 With partner Living together Antipsychotic medication, antidepressants FEP *FEP: First episode psychosis †PTSS: Post traumatic stress syndrome ‡PDD: Pervasive Developmental Disorder §ADD: Attention deficit disorder ¶ ADHD: Attention deficit hyperactivity disorder
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