Patient-Initiated Brief Admission for Emotional Instability and Self-Harm

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Thesis for doctoral degree (Ph.D.) 2022

Patient-Initiated Brief Admission for Emotional Instability and Self-Harm

Joachim Eckerström

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From Department of Clinical Neuroscience Karolinska Institutet, Stockholm, Sweden

PATIENT-INITIATED BRIEF ADMISSION FOR EMOTIONAL INSTABILITY

AND SELF-HARM

Joachim Eckerström

Stockholm 2022

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All previously published papers were reproduced with permission from the publisher.

Published by Karolinska Institutet.

Printed by Universitetsservice US-AB, 2022

Cover illustration: “The PIBA Effect” made by Joachim Eckerström, May 2022.

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Patient-Initiated Brief Admission for Emotional Instability and Self-harm

THESIS FOR DOCTORAL DEGREE (Ph.D.)

By

Joachim Eckerström

The thesis will be defended in public at 90-salen, Norra Stationsgatan 69, 6 tr, Stockholm.

2022-06-17 at 09.00 AM.

Principal Supervisor:

Assistant Professor Nitya Jayaram-Lindström Karolinska Institutet

Department of Clinical Neuroscience Division of Centre for Psychiatry Research Co-supervisors:

Associate Professor Lena Flyckt Karolinska Institutet

Department of Clinical Neuroscience Division of Centre for Psychiatry Research Associate Professor Andreas Carlborg Karolinska Institutet

Department of Clinical Neuroscience Division of Centre for Psychiatry Research

Opponent:

Professor Aslak Steinsbekk

Norwegian University of Science and Technology Department of Public Health and Nursing

Examination Board:

Professor Ulla-Karin Schön Stockholm University Department of Social Work

Associate Professor Sally Hultsjö Linköping University

Department of Medical and Health

Associate Professor Elisabeth Welch Karolinska Institutet

Department of Clinical Neuroscience

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To my wife Aster,

and our beloved Oliver and Felicia.

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Acta non verba.

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POPULAR SCIENCE SUMMARY OF THE THESIS

Self-harm is a major problem, especially among young people where 36% of Swedish high school students have hurt themselves at least once. The number is even higher among people in contact with mental health services, where nearly half of them had harmed themselves in the last six months. Common reasons for self-harming behaviors are for regulating emotions (i.e., escaping a negative state or inducing positive state) or as self-punishment.

A patient group, where self-harm is highly prevalent is among those with emotional instability. The core symptoms of emotional instability are characterized by instable interpersonal relationships, disturbed self-image and impulsive behavior. Emotional instability is in its most pronounced form, diagnosed as borderline personality disorder (BPD). In the general population the prevalence of BPD varies between 0,7% to 5,9%, and more prevalent among women (75% higher). Persons within this diagnostic group have significantly more impairment at work, in social relationships and in leisure activities and are known to be high consumers of health care and social services, especially psychiatric services and emergency hospital services. Suicidality is also a characteristic of BPD, where 75% have attempted suicide and 10% complete suicide.

Studies from the health care perspective have shown that healthcare professionals experienced problems in meeting this patient populations needs and viewed patients with BPD as a challenging group, especially regarding assessment of suicide risk. This often led to decision of compulsory care, including continuous monitoring of actions during inpatient care and removing objects which they could potentially harm themselves with.

Healthcare professionals described this -and-mouse- leaving them feeling helpless to support these patients. Over the years evidence-based treatments in outpatient settings have been developed for this patient population, e.g., one form of

psychological intervention known as dialectic behavioral therapy, which is the recommended first-line of treatment. However, to date, there are no effective and structured treatments for this patient population within the psychiatric inpatient care setting.

To address the need for acute crisis management in situations of increased stress and anxiety for patients with BPD, a new care form called patient-initiated brief admission (PIBA) was developed. PIBA is a psychiatric nursing intervention based on the theoretical concepts of increased patient participation, shared decision-making and patient autonomy. The aim of PIBA is to promote constructive coping strategies when increased anxiety and thoughts of self-harm becomes unmanageable. Patients with a PIBA agreement are given the opportunity to identify their own need for admission into psychiatric inpatient care, without first being assessed by a healthcare professional. The patients initiate PIBA via a phone call directly to a psychiatric ward. The structure and contents of the intervention are stated in a specific individual plan for each patient, referred to as a PIBA contract, which must be developed together with the patient. The duration of PIBA for patients with BPD is between 1 3 days, with a maximum utilization of 3 times per month. The process of formulating a PIBA

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contract and the subsequent use of PIBA in situations of crisis, has the potential to not only and the symptom fluctuations but also to develop their coping skills.

The overall aim of the present thesis was to increase the understanding of PIBA as a crisis intervention for patients with emotional instability and self-harm. To fulfill this aim, four scientific studies were preformed using qualitative and quantitative designs.

Study I aimed to des of working with PIBA related to patients with emotional instability and self-harm. The qualitative content analysis of the interviews resulted in four main categories describing of PIBA: provides security and continuity , fosters caring relationships , shifts focus

and empowers the patients . Study II aimed t

experiences, what they consider to be the key components, and what improvements are considered relevant from their perspective. Thematic analyses were performed from the patient interviews

The f

ndly and welcoming . Lastly, three themes described

PI

Study III aimed to explore how PIBA affected psychiatric symptoms and health- related quality of life (HRQoL) after the intervention, and whether patients perceive PIBA as a constructive crisis intervention. At admission and discharge, the patients completed two self-rating scales: the Hospital Anxiety and Depression Scale (HADS) and the EuroQoL-5 Dimension Questionnaire (EQ-5D). The patients also evaluated PIBA as a crisis intervention via a self-evaluation form. A significant decrease in symptoms of anxiety and depression was found. HRQoL increased significantly as assessed with EQ-5D and 95.2% of the participants exeprienced PIBA to be a constructive intervention.

Study IV aimed to explore the effects of PIBA for emotional instability and self-harm on psychiatric care consumption. Register-based data were collected from inpatient and outpatient care patient registrers, extracted from The National Board of Health and Welfare, Sweden. The control group (individuals diagnosed with BPD) reduced their days in psychiatric inpatient care during the follow-up period (up to five years) yearly with 16%, and a further reduction by 14% was found in the PIBA group (p = 0.064). There was no significant difference between the groups regarding total visits in psychiatric outpatient care.

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Collectively, the thesis and studies therein demonstrate that PIBA functions as a supportive intervention in times of crisis and is an appreciated complement to the regular outpatient treatment. PIBA shows potential to reform inpatient psychiatric care and also reduce health care costs.

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POPULAR SCIENCE SUMMARY IN SWEDISH

Självskadebeteende är ett stort problem i samhället, särskilt bland unga människor. En svensk studie visar att 36 % av gymnasieelever hade skadat sig själva minst en gång. Antalet var ännu högre bland personer i kontakt med psykiatrisk vård, där nästan hälften av dem självskadat under det senaste halvåret. Vanliga orsaker till självskadebeteende är för att reglera känslor (t.ex. att fly från ett negativt tillstånd eller framkalla ett positivt tillstånd) eller som självbestraffning. En patientgrupp, där självskadebeteende förekommer, är personer diagnostiserade med emotionellt instabilt personlighetssyndrom (EIPS). Kärnsymptomen av EIPS kännetecknas av instabila relationer, osäkerhet kring självbild och identitet samt impulsivt beteende. I den allmänna befolkningen varierar prevalensen av EIPS mellan 0,7%

till 5,9% och är 75% högre bland kvinnor. Personer inom denna diagnosgrupp har visat sig ha lägre funktionsnivå i arbetet, i sociala relationer och i fritidsaktiviteter samt är kända för att vara högkonsumenter av hälso- och sjukvård, särskilt inom psykiatri och akutsjukvård.

Suicidalitet förekommer även bland patienter med EIPS, där 75% utfört suicidförsök och 10% fullbordat suicid.

Studier visar att vårdpersonal hade problem med att tillgodose denna patientgrupps

vårdbehov och betraktade patienter med EIPS som en utmanande grupp, särskilt när det gäller bedömning av suicidrisk. Detta kunde leda till tvångsvård, inklusive kontinuerlig

övervakning av patienternas agerande under inneliggande vård samt borttagande av föremål som patienter kan skada sig själva med. Vårdpersonal beskrev denna typ av vård som en

"katt-och-råtta-lek", vilken fick dem att känna sig hjälplösa avseende att stödja dessa patienter. Under årens lopp har flera öppenvårdsbehandlingar utvecklats, till exempel dialektisk beteendeterapi, men det finns inga effektiva och strukturerade behandlingar inom psykiatrisk heldygnsvård.

För att möta behovet av krishantering i situationer med ökad stress och ångest för patienter med EIPS, utvecklades en ny vårdform kallad självvald inläggning (SI). SI är en psykiatrisk omvårdnadsintervention baserad på de teoretiska begreppen autonomi, delaktighet och delat beslutsfattande. Syftet med SI är att främja konstruktiva copingstrategier när ökad ångest och självskadetankar blir ohanterliga. Patienter med SI-överenskommelse ges möjlighet att själva avgöra när de är i behov av en kortare inläggning inom psykiatrisk heldygnsvård, utan att först bedömas av läkare. Patienterna initierar SI genom ett telefonsamtal direkt till en

psykiatrisk avdelning. Interventionens struktur och innehåll framgår av en specifik individuell plan för varje patient, kallad SI-överenskommelse, som upprättas tillsammans med patienten.

Varaktigheten av SI är mellan 1 3 dygn, med en maximal användning av tre gånger per månad. Processen kring formuleringen av SI-överenskommelse och den efterföljande användningen av SI i krissituationer, har potential att öka patienternas insikt om sin

psykiatriska sjukdom, symtomsvängningarna och ytterligare utveckla deras copingförmåga.

Det övergripande syftet med denna doktorsavhandling var att öka förståelsen om SI som krisintervention för patienter med emotionell instabilitet och självskadebeteende. För att

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uppfylla detta mål genomfördes fyra vetenskapliga studier, både med kvalitativ och kvantitativ design.

Studie I syftade till att beskriva sjuksköterskors upplevelser av att arbeta med SI. Den kvalitativa innehållsanalysen av intervjuerna med sjuksköterskorna resulterade i fyra huvudkategorier som beskrev deras upplevelse av SI: skapar trygghet och

kontinuitet , främjar vårdande relationer , flyttar fokus mot patientens hälsa samt stärker patienterna .

Studie II syftade till att utforska patienters upplevelser av SI, i termer av

övergripande upplevelser, vad de anser vara kärnkomponenter och vilka förbättringar som anses relevanta. Patientintervjuerna analyserades genom tematisk analys, vilken resulterade i fyra teman relaterade till patienternas upplevelser: en timeout när livet är tufft , trygghet att veta att hjälp finns , får ta eget ansvar och hjälp att se problemen på ett annat sätt . Fyra teman beskrev också kärnkomponenterna: tydlig plan för inläggningen , en smidig inläggningsprocedur , ett vänligt och

välkomnande bemötande från personalen och dagliga samtal . Slutligen beskrevs tre teman med områden för förbättringar: motstånd att ringa upp , att rummet är upptaget när man behöver det och skillnad i kompetens hos personalen . Studie III syftade till att undersöka hur SI påverkar psykiatriska symtom och

hälsorelaterad livskvalitet efter inläggningen, och om patienter uppfattar SI som en konstruktiv krisintervention. Vid in- och utskrivning fyllde patienterna i två

självskattningsskalor: Hospital Anxiety and Depression Scale (HADS) och EuroQoL- 5 Dimension Questionnaire (EQ-5D). Patienterna utvärderade också SI genom ett utvärderingsformulär. Symtom av ångest och depression minskade signifikant.

Hälsorelaterad livskvalitet ökade signifikant samt 95,2% av deltagarna bedömde SI som en konstruktiv intervention.

Studie IV syftade till att utforska effekterna av SI på psykiatrisk vårdkonsumtion.

Registerbaserade data samlades in från patientregistret för slutenvård och öppenvård, inhämtad från Socialstyrelsen. Kontrollgruppen (individer diagnistiserade med EIPS) minskade årligen antalet dagar inom psykiatrisk heldygnsvård under

uppföljningstiden (upp till fem år) med 16% och en ytterligare minskning med 14%

hos SI-gruppen (p = 0,064). Det fanns ingen signifikant skillnad mellan grupperna avseende besök inom psykiatrisk öppenvård.

Sammantaget, doktorsavhandlingen visar att SI fungerar som en stödjande krisintervention samt är ett uppskattat komplement till de sedvanliga öppenvårdsbehandlingarna. SI har potential att kunna reformera psykiatrisk heldygnsvård, vilket även kan vara

kostnadseffektivt.

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ABSTRACT

Background: Previous studies have reported negative experiences of psychiatric inpatient care for patients with emotional instability and self-harm. A novel intervention called patient- initiated brief admission (PIBA) has been developed, as a constructive crisis management for patients in situations of increased anxiety and thoughts of self-harm and suicide. The intervention allows the patient to directly call the psychiatric ward, to initiate a short admission (1 3 days). This easily accessible form of care may prevent the escalation of anxiety and self-harm during a period of crisis and also reduce need for prolonged admissions.

Aims: The overall aim of the present thesis was to increase the understanding of PIBA as a crisis intervention for patients with emotional instability and self-harm. The specific aims were the following: (1) to describe psychiatric PIBA, (2) to

and what they consider to be the key components and areas which can be improved, (3) to explore how PIBA impacts the psychiatric symptoms and health-related quality of life after the intervention, and whether the patients perceive PIBA as a constructive crisis intervention, and (4) to explore the effects of PIBA on psychiatric care consumption.

Methods: To achieve an increased understanding of PIBA from different perspectives, a mixed set of study designs and methods were chosen. Study I and II had a qualitative design and study III and IV had a quantitative design.

Study I: Eight nurses were interviewed using semi-structured interview guide and data analyzed according to qualitative content analysis.

Study II: Fifteen patients were interviewed with a semi-structured interview guide and data analyzed according to thematic analysis.

Study III: Hundred and thirteen patients experiences of PIBA was evaluated in a pre- post test naturalistic study design. Data was analyzed with paired sample T-tests.

Effect sizes were evaluated by d .

Study IV: A register-based study including data from both inpatient and outpatient care registers, collected from The National Board of Health and Welfare in Sweden.

The PIBA group comprised 113 patients and the control group 5769 patients, all diagnosed with BPD during period January 1, 2016, to December 31, 2019. Multi- level models for count data were used in the data analysis.

Results: The main findings for each study were as follows:

Study I: PIBA: provides security and continuity, fosters

caring relationships , shi and empowers the

patient

relationships with

instead of management of psychiatric symptoms.

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Study II:

components of

Study III: A significant decrease in symptoms of anxiety and depression was found.

Health-related quality of life increased significantly and 95.2% of the participants found PIBA to be a constructive intervention.

Study IV: The control group reduced the number of days in psychiatric inpatient care yearly by 16% during follow-up (up to five years), while a further reduction by 14%

was found in the PIBA group (p = 0.064). There was no significant difference between the two groups regarding total number of visits in outpatient care during the study period.

Conclusion: The findings from study I-III indicate that PIBA constructively supports patients with emotional instability and self-harm during a period of crisis. Study IV show promising results in reducing psychiatric inpatient days with potential to reduce health care costs.

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LIST OF SCIENTIFIC PAPERS

I. Eckerström, J., Allenius, E., Helleman, M., Flyckt, L., Perseius, K. I., &

Omerov, P. (2019). Brief admission (BA) for patients with emotional instability and self-harm: nurses' perspectives - person-centred care in clinical practice. International journal of qualitative studies on health and well-being, 14(1), 1667133. https://doi.org/10.1080/17482631.2019.1667133

II. Eckerström, J., Flyckt, L., Carlborg, A., Jayaram-Lindström, N., & Perseius, K. I. (2020). Brief admission for patients with emotional instability and self- harm: A qualitative analysis of patients' experiences during

crisis. International journal of mental health nursing, 29(5), 962 971.

https://doi-org.proxy.kib.ki.se/10.1111/inm.12736

III. Eckerström, J., Carlborg, A., Flyckt, L., & Jayaram-Lindström, N. (2022).

Patient-Initiated Brief Admission for Individuals with Emotional Instability and Self-Harm: An Evaluation of Psychiatric Symptoms and Health-Related Quality of Life. Issues in mental health nursing, 1 10. Advance online publication. https://doi-org.proxy.kib.ki.se/10.1080/01612840.2021.2018530 IV. Eckerström, J., Rosendahl, I., Lindkvist, R-M., Carlborg, A., Flyckt, L., &

Jayaram-Lindström, N. (2022). Patient-Initiated Brief Admission (PIBA) for Emotional Instability and Self-Harm: Effects on Consumption of Psychiatric Care. (Manuscript).

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LIST OF ABBREVIATIONS

APA BA BPD CBT CGI-S COREQ DBT DSM DSM-5 EIPS EQ-5D EQ-5D-3L HADS HADS-A HADS-D HRQoL ICD ICD-10 ICD-11 ICNP IRR MBT M MD NANDA-I

American Psychiatric Association Brief Admission

Borderline Personality Disorder Cognitive Behavioral Therapy Clinical Global Impression - Severity

Consolidated Criteria for Reporting Qualitative Research Dialectical Behavior Therapy

Diagnostic and Statistical Manual of Mental Disorders Diagnostic and Statistical Manual of Mental Disorders, v. 5 Emotionellt instabilt personlighetssyndrom

EuroQoL-5 Dimension Questionnaire

EuroQoL-5 Dimension Questionnaire, 3 Levels Hospital Anxiety and Depression Scale

Hospital Anxiety and Depression Scale, Anxiety Subscale Hospital Anxiety and Depression Scale, Depression Subscale Health-Related Quality of Life

International Classification of Diseases

International Classification of Diseases, 10^th Revision International Classification of Diseases, 11^th Revision International Classification of Nursing Practice Incidence Risk Ratio

Mentalization-Based Therapy Mean

Missing data

NANDA International NSSI

OR PCA

Non-Suicidal Self-Injury Odds Ratio

Patient-Controlled Admission PIBA

RCT

Patient-Initiated Brief Admission Randomized Clinical Trial

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SD SRIT TAU VAS WHO

Standard Deviation

Self-Rererral to Inpatient Treatment Treatment As Usual

Visual Analogue Scale World Health Organization

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1 INTRODUCTION

Working in psychiatric care is a mixture of challenges and sense of satisfaction for its personnel. It is a privilege when patients place their trust in you as a health care professional and open up about their inner thoughts and personal struggles. The most rewarding times for health care professionals are when a trustful caring relationship with patients is established, and one feels that a difference can be made in terms of improvement of health and

contribution to recovery. But this is not always the case within psychiatric care, as other factors such as lack resources, hierarchy and organizational structures may have a bearing on the health care professionals time and workload. For example, it is often stressful to work as the only nurse in an inpatient ward, with limited possibility to take the desired time for each patient, in order to fully assess their current needs and take full responsibility over their care process. The patients in turn often become passive during these periods of inpatient hospitalization. Such work conditions often contribute to high turnover in the nursing profession, resulting in less optimal premises for the staff. This naturally also has an overall effect on the care given for all patients, but even more specifically the patient group with emotional instability and self-harm, often diagnosed with borderline personality disorder (BPD) and viewed as difficult-to-treat .

With the intention to bridge the structural gap between out- and inpatient care and address the organizational need for development within the psychiatric services, a new care form called patient-initiated brief admission (PIBA) has been developed. PIBA is as a structured nursing intervention and serves as a crisis intervention for the patient. The purpose of PIBA is to provide a time-out in a safe environment, in situations of increased stress and threatening crisis. The aim is to help promote constructive self-regulation of emotions, the use of coping strategies and thereby prevent self-destructive behaviors as well as prolonged admissions.

I am a specialist nurse by training and the overall aim of the thesis was increase the

understanding of PIBA as a crisis intervention for patients with emotional instability and self- harm and make a contribution on this topic within the nursing field in psychiatry.

Joachim Eckerström April 2022, Stockholm

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2 LITERATURE REVIEW

2.1 SUICIDE AND SELF-HARM

Every year, 703 000 persons die from suicide worldwide (1,3 % of all deaths), which is a higher death toll than caused by breast cancer, malaria, HIV/AIDS or homicide and war (World Health Organization, 2021). The United Nations (2017) has in the Sustainable Development Goals included the reduction of suicide related mortality as a prioritized indicator by stating to reduce by one third, premature mortality from non- communicable diseases through prevention and treatment and promote mental health and well- here were approximately 15 suicide attempts for each death by suicide (Borges et al., 2010). Among individuals committing suicide, 80% had contact with primary health care services within the final year prior to suicide and 44% had contact within the last month (Stene-Larsen & Reneflot, 2019). Serious mental illnesses such as major depression, bipolar disorder, schizophrenia and personality disorders are associated with an increased suicide risk (Turecki & Brent, 2016) and about 57% of those individuals committing suicide had been in contact with psychiatric services during their lifetime (Stene-Larsen & Reneflot, 2019). Prior to suicide, 31% of the individuals were in contact with psychiatric care during their last twelve months of their lives and 21% had a contact during their last month (Stene-Larsen &

Reneflot, 2019).

Other forms of self-destructive behavior comprise different types of self-harm, which are divided into suicidal behavior or non-suicidal self-injury (NSSI), where NSSI is defined as deliberate self-damage of body tissue without intention to cause death (Reichl & Kaess, 2021). Common reasons of NSSI can be both intra- or interpersonal functions, where emotion regulation (escaping negative state or inducing positive state) and self-punishment are categorized as intrapersonal functions while communicating levels of distress, interpersonal influence and punishing others, are grouped as interpersonal functions (Taylor et al., 2018).

Both suicidality and self-harm behaviors manifest in several psychiatric disorders, but are especially relevant in the context of borderline personality disorder (BPD) (Reichl & Kaess, 2021).

Self-harm is prevalent among adolescents and young adults. A large Swedish study including more than 3,000 high school students found that a third hadself-harmed at least once (Zetterqvist, Lundh, Dahlström, & Svedin, 2013). Among adults, a report examining the prevalence of self-harm in psychiatric settings in Sweden, found that almost half of the individuals currently receiving mental health services had self-harmed during the past six months (Odelis & Ramklint, 2014). Of those who had engaged in self-harming behavior, more than 90% had experienced suicidal thoughts during their lifetime and about half of the individuals had at least once during their lives, attempted suicide. For a small group of individuals, acts of self-harm are frequent, and risk for suicide is recurrent and in turn elevated (Lieb, Zanarini, Schmahl, Linehan, & Bohus, 2004).

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2.2 EMOTIONAL INSTABILITY

The core symptoms of emotional instability are characterized by unstable interpersonal relationships, disturbed self-image and impulsive behaviors (Gunderson, Herpertz, Skodol, Torgersen, & Zanarini, 2018). Emotional instability is, in its most pronounced form, diagnosed as BPD and the onset is usually during adolescence or early adulthood (American Psychiatric Association, 2013). In the general population the prevalence of BPD varies between 0,7 % to 5,9 % (Cailhol et al., 2017). The discrepancy between studies has been due to varied factors such as differences in diagnostic criteria, the design of the surveys and assessment instruments (Grant et al., 2008). Another limitation in these prevalence studies has been a lack of description of whether BPD was diagnosed as main problem or as a comorbidity (Cailhol et al., 2017). Of relevance in the context of prevalence is the fact that BPD as a psychiatric diagnosis is more predominant among women, i.e., about 75%

(American Psychiatric Association, 2013).

According to study from United States of America including assessments of a Short Form-12 Health Survey, version 2 (SF-12v2) showed that BPD is associated with significant mental and physical disability, especially among women (Grant et al., 2008). Persons within this diagnostic group have also been found to have significantly more impairment at work, in social relationships and in leisure activities when compared to individuals with a major depressive disorder (Gunderson et al., 2011). Chronic suicidality is also characteristic of BPD, and in addition individuals with BPD are known to be high-level users of health care and social services, especially psychiatric services and emergency hospital services (Chiesa, Fonagy, Holmes, Drahorad, & Harrison-Hall, 2002). Among these patients, 75% have attempted suicide and 10% complete suicide (Black, Blum, Pfohl, & Hale, 2004). The loss of life expectancy in BPD is 9 years for men and 13 years for women (Cailhol et al., 2017).

2.2.1 Diagnostic Classification Systems

Personality disorders are a predictor for worse treatment outcome and cause both premature death and high cost for society (Tyrer, Reed, & Crawford, 2015). Previous research in personality disorders have highlighted difficulties with the construction of the diagnostic system, e.g., with overlaps between diagnostic categories, arbitrary thresholds and lack of evidence for categories (Bach & First, 2018). It is important to identify people with

personality disorders like BPD, in order to provide appropriate care (Tyrer et al., 2015). There are two diagnostic classification systems used in psychiatry; (1) the International

Classification of Diseases (ICD) developed by World Health Organization (WHO)(2018) and (2) the Diagnostic and Statistical Manual of Mental Disorders (DSM) developed by

American Psychiatric Association (APA)(2013).

2.2.1.1 International Classification of Diseases

The WHO (2018) strives to build a better future for people all over the world. To combat diseases WHO adopted the first international classification in 1893. A century later, the 10^th version was approved and has been the standard to report diseases and health conditions,

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resulting in over 20,000 citations in scientific articles. The 11^th edition was released in 2018 and the terminology for was changed (World Health Organization, 2018). ICD-11 focus on degree of severity unlike ICD-10 where a number of criteria should be met (Bach & First, 2018). The dimensional approach of ICD-11 was applied to different cases and suggested that classification of severity may help clinicians to choose appropriate treatment (Bach & First, 2018). For instance, a central goal in clinical care could be to help patients with personality disorders be less self-destructive and regulate their emotions in crisis situations, with the purpose of leading to a change over time, in the diagnostic severity. The definitions of BPD according to ICD-10 and ICD-11 are presented in Table 1.

Table 1. Definitions of BDP according to ICD-10 and ICD-11.

Classification Definition/Criteria

ICD-10 Quote from World Health

Organization (1992).

ICD-10: F60.3 Emotionally unstable personality disorder

A personality disorder in which there is a marked tendency to act impulsively without consideration of the consequences, together with affective instability.

The ability to plan ahead may be minimal, and outbursts of intense anger may often lead to violence or "behavioral explosions"; these are easily precipitated when impulsive acts are criticized or thwarted by others. Two variants of this personality disorder are specified, and both share this general theme of impulsiveness and lack of self-control.

F60.30 Impulsive type

The predominant characteristics are emotional instability and lack of impulse control. Outbursts of violence or threatening behaviour are common, particularly in response to criticism by others.

Includes: explosive and aggressive personality (disorder) Excludes: dissocial personality disorder (F60.2) F60.31 Borderline type

Several of the characteristics of emotional instability are present; in addition, the patient's own self-image, aims, and internal preferences (including sexual) are often unclear or disturbed. There are usually chronic feelings of emptiness. A liability to become involved in intense and unstable relationships may cause repeated emotional crises and may be associated with excessive efforts to avoid abandonment and a series of suicidal threats or acts of self-harm (although these may occur without obvious precipitants).

Includes: borderline personality (disorder)

ICD-11 Quote from World Health

Organization (2018).

ICD-11: 6D10 Personality disorder

Personality disorder is characterized by problems in functioning of aspects of the self (e.g., identity, self-worth, accuracy of self-view, self-direction), and/or interpersonal dysfunction (e.g., ability to develop and maintain close and mutually satisfyi

perspectives and to manage conflict in relationships) that have persisted over an extended period of time (e.g., 2 years or more). The disturbance is manifest in patterns of cognition, emotional experience, emotional expression, and behavior that are maladaptive (e.g., inflexible or poorly regulated) and is manifest across a range of personal and social situations (i.e., is not limited to specific relationships or social roles). The patterns of behavior characterizing the disturbance are not developmentally appropriate and cannot be explained primarily by social or cultural factors, including socio-political conflict. The disturbance is associated with substantial distress or significant impairment in personal, family, social, educational, occupational, or other important areas of functioning.

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Sub-diagnosis:

6D10.0 Mild personality disorder 6D10.1 Moderate personality disorder 6D10.2 Severe personality disorder

6D10.Z Personality disorder, severity unspecified

In combination with the Personality disorder category (Mild, Moderate, or Severe), a prominent personality traits or patterns can be used. ICD-11 include the following:

6D11 Prominent personality traits or patterns:

6D11.0 Negative affectivity in personality disorder or personality difficulty 6D11.1 Detachment in personality disorder or personality difficulty 6D11.2 Dissociality in personality disorder or personality difficulty 6D11.3 Disinhibition in personality disorder or personality difficulty 6D11.4 Anankastia in personality disorder or personality difficulty 6D11.5 Borderline pattern

6D11.5 Borderline pattern:

The Borderline pattern descriptor may be applied to individuals whose pattern of personality disturbance is characterized by a pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity, as indicated by many of the following: Frantic efforts to avoid real or imagined abandonment; A pattern of unstable and intense

interpersonal relationships; Identity disturbance, manifested in markedly and persistently unstable self-image or sense of self; A tendency to act rashly in states of high negative affect, leading to potentially self-damaging behaviours; Recurrent episodes of self-harm; Emotional instability due to marked reactivity of mood; Chronic feelings of emptiness; Inappropriate intense anger or difficulty controlling anger; Transient dissociative symptoms or psychotic-like features in situations of high affective arousal.

2.2.1.2 Diagnostic and Statistical Manual of Mental Disorders

The fifth edition of DMS (DSM-5) was released in 2013 and describe personality disorders as behavioral

(American Psychiatric Association, 2013). There are ten different personality disorders and the criteria overlap and different views between DSM-5 and ICD-10 have been pointed out.

For instance, DSM-5 focuses on the subjective emotional report and ICD-10 on objective identifiable behaviors (Jani, Johnson, Banu, & Shah, 2016). Although the symptoms of BPD are internationally recognized, they are criticized for being broad and non-specific. The risk of diagnostical bias and relevance of cultural competence have also been previously highlighted Jani et al. (2016). The definition of BPD according to DSM-5 is presented in Table 2.

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Table 2. Definition of BPD according to DSM-5.

Classification Definition/Criteria

DSM-5 Quote from

American Psychiatric Association (2013).

301.83 (F60.3) Borderline Personality Disorder:

A pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:

1) Frantic efforts to avoid real or imagined abandonment. (Note: Do not include suicidal or self-mutilating behavior covered in Criterion 5.) 2) A pattern of unstable and intense interpersonal relationships

characterized by alternating between extremes of idealization and devaluation.

3) Identity disturbance: markedly and persistently unstable self-image or sense of self.

4) Impulsivity in at least two areas that are potentially self-damaging (e.g., spending, sex, substance abuse, reckless driving, binge eating). (Note:

Do not include suicidal or self-mutilating behavior covered in Criterion 5.)

5) Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior.

6) Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days).

7) Chronic feelings of emptiness.

8) Inappropriate, intense anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights).

9) Transient, stress-related paranoid ideation or severe dissociative symptoms.

2.2.2 Treatment of BPD

At present in Sweden there are three major ways of receiving care within specialist

psychiatric care for all patients (see Figure 1). One is outpatient care where the patients are in their home environment and visit psychiatric outpatient units for treatment and follow-up, according to an established care plan. Second, in acute situations with heightened stress, suicidal plans and/or deep depressive symptoms, the patients can seek care via an emergency department for assessment by a psychiatric healthcare professional to assess the need for inpatient care leading to admission. A third way of accessing care, is PIBA when symptoms escalate and become difficult to manage in a home environment and the patients can call a specific hospital ward and request access to care by signing themselves in, to receive crisis support for 1-3 days within the inpatient facility. In this model, the patient can still participate in outpatient treatment and activities outside the ward.

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8

Figure 1. Care alternatives within psychiatric services.

2.2.2.1 Outpatient care

For patients with BPD, a few evidenced-based psychological treatments exist within the outpatient settings, such as Dialectical Behavior Therapy (DBT) and Mentalization-based Therapy (MBT) (Barnicot & Crawford, 2019). Given the complex nature of BPD, these treatments are often designed as twelve months therapy (Stoffers et al., 2012). DBT focuses on behavioral change and the ability to control difficult feelings by increasing stress tolerance, improving skills related to emotion regulation, interpersonal behavior, and mindfulness. DBT was developed using some of the principles of cognitive behavioral therapy (CBT) in combination with mindfulness. CBT consists of three core principles:

cognitive activity affects behavior, cognitive activity may be monitored and altered, and desired behavioral change can occur through cognitive change (Dobson, 2009).

Mentalization-based therapy (MBT) is a psychoanalytically-based intervention with focus on reflective or mentalizing capacity, understanding and recognize the feelings they arouse in others and themselves (Stoffers et al., 2012). A quasi-experimental comparison between the two psychological treatments for BPD showed a more rapid decrease of self-harm among patients treated with DBT than MBT (Barnicot & Crawford, 2019). This may be explained by DBT main focus lying on teaching emotion regulation skills, compared to MBT where focus is on promoting mentalization and indirectly changing destructive behavior (Barnicot &

Crawford, 2019).

2.2.2.2 Regular psychiatric admission

For patients with BPD, inpatient care often results in increased stress and self-harm that severely affects the patients and their health processes (Holm, Björkdahl, & Björkenstam, 2011). Difficulties meeting the in these settings, have been described by healthcare professionals as one of the reasons for the increase in stress for patients (Betan, Heim, Zittel Conklin, & Westen, 2005; Cleary, Siegfried, & Walter, 2002; Westwood &

Baker, 2010). For instance nurses often perceive patients with BPD as a challenging group to work with and they describe a need for a therapeutic framework to guide their practice (Dickens, Lamont, & Gray, 2016). Nurses working in inpatient care often meet patients with

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BPD in these settings, during their worst turmoil. Anger, self-harm and the risk of committing suicide are common symptoms that are manifested and are experienced as challenging by the attending health care professional and in turn adversely impact the emotional strain on the nurses (Cutcliffe & Barker, 2002). It is therefore not uncommon that inpatient psychiatric care results in conflicts between patients and their care personnel, leading to negative effects in the ward environment and impacting the needed care (Newton-Howes & Mullen, 2011).

Utilization of coercive measures, in attempts to contain or calm the patient often raise ethical concerns, even when nurses find such measures necessary (Happell & Harrow, 2010).

important antecedent to violence and aggression within psychiatric inpatient care settings (Papadopoulos et al., 2012). Psychiatric hospital staff within inpatient care are often

gate-keepers

patients in crisis and the attitudes are perceived as authoritative towards patient with BPD (Bodner et al., 2015)

caring for patients who self-harm show that negative attitudes are common (Karman, Kool, Poslawsky, & van Meijel, 2015; McHale & Felton, 2010; Saunders, Hawton, Fortune, &

Farrell, 2012). A more positive attitude can be possible with an increased understanding of self-harm and improved training (McHale & Felton, 2010).

2.3 PATIENT-INITIATED BRIEF ADMISSION (PIBA)

PIBA as explained in the previous section, enables self-controlled and self-planned admission in psychiatric inpatient care for patients. The purpose of PIBA is to provide a time-out in a safe environment in situations of increased stress and threatening crisis. The aim is to promote constructive self-regulation of emotions, the use of coping strategies and thereby prevent self-destructive behavior as well as prolonged admissions (Helleman, Goossens, Kaasenbrood, & van Achterberg, 2014a).

2.3.1 Structure and Care Content of PIBA

The premises of this care form is a designated room in a psychiatric inpatient ward. The interior of the room is designed to promote recovery by offering a relaxing and calming environment. The room comprises a comfortable armchair with footstool, paintings or photo boards on the walls, curtains and a plant in the window. All of these are available in addition to standard furnishings which includes a bed, bedside table and wardrobe. Patients with the special agreement, called PIBA contract, can initiate this crisis intervention by a phone call directly to the ward. The contract works as a mutual plan for the patient and the health care professionals and are made in joint discussion between the patient, a specialist nurse from inpatient care and the treatment partner (e.g., psychologist or nurse) at the outpatient care.

The PIBA contract contains four parts, which are presented in Table 3. After the PIBA contract is established, it is included in the

During PIBA, a designated nurse in the ward is responsible for the admission and for the discharge.

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Table 3. The PIBA contract comprises the following components.

Section Subject Explaining text Example of PIBA contract

Part 1

When to use PIBA

Goals of PIBA:

In dialogue with healthcare professionals, the patient formulates goals that help him / her regain control of emotions, thoughts, and problems.

Prevent self-harm.

Indication for PIBA:

For example, when symptoms of emotional instability and/or thoughts of self-harm cannot be controlled using other resources or coping mechanisms.

When thoughts of self-harm are too strong and difficult to manage by myself.

When NOT to use PIBA

Regular admission instead:

The patient writes down when he / she should use a regular admission instead and contact psychiatric emergency unit.

When I feel that I cannot take responsible over my own actions and I am already in a crisis.

Part 2 Structure of PIBA

Duration of PIBA: Between 1 3 days per admission. 3 days Max. admissions

per month:

Between 1 3 times. 3 times

Contact information:

Telephone number to the ward. Phone number:

Medication:

The patient confirms that he / she will bring and administrate their own

medication for each admission. (No contact with ward physician during PIBA.)

Yes

Ward rules:

The patient confirms that he / she read and will follow the ward rules, which for example include not to bring any sharp objects, drugs, and alcohol.

Yes

Action plan:

What to do when PIBA is unavailable due

to lack of vacancy. Check my crisis plan.

Call the psychiatric mobile team for supportive conversation.

Conditions for premature discharge:

PIBA shall be interrupted if this contract is violated (for example, due to self-injury, alcohol, or drug use, aggressive behaviour, or suicide attempts).

I agree.

Part 3 Care content of PIBA

Daily activities:

The patient tries to maintain his / her daily activities (for example: family obligations, studies, work, and interests) and keep his or her outpatient therapy appointments whenever possible during PIBA.

Daily supportive

conversations with nurses on the ward.

Attend outpatient therapy, DBT.

Go for walks.

Relaxation strategies:

The patient notes his / her individual

relaxation strategies in the contract. Read room.

Yoga, mindfulness, rest Other individual

agreements:

If there are any additional individual adjustments, they will be noted here.

Want to borrow weighted blanket from the ward during PIBA.

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Part 4 Agreement

Signatures:

If it is manually written on paper, the patient, specialist nurse from inpatient care, and healthcare professional from outpatient care sign the contract. If the contract will be written direct in the electronic journal system, it must be clarified who drafted the contract.

Patient's signature.

Specialist nurse from inpatient care signature.

Healthcare professional from outpatient care signature.

Administration: Once the contract has been signed, it will be scanned into the electrical journal system.

The patient receives a copy of the contract.

2.3.2 Professional Approach During PIBA

The health care guidelines states that the approach by healthcare providers shall be characterized

psychiatric status. All healthcare professional in the wards are trained on the content and desired treatment behavior of PIBA.

2.3.3 Theoretical Concepts of PIBA

PIBA is a psychiatric nursing intervention based on the theoretical concepts of patient participation, shared decision-

participation is learning, the caring relationship and reciprocity and is a fundamental basis of nursing and medical treatment (Nilsson, From, & Lindwall, 2019). The foundation of shared decision-making is built on communication and relationship, and requires dedicated work towards decision and relevant actions (Truglio-Londrigan & Slyer, 2018). Respect of every patient autonomy is included in the code of ethics (International Council of Nurses, 2021) and are characterized by the following; to be seen as a unique person, having a capacity to act, the oblig

(Lindberg, Fagerstrom, Sivberg, & Willman, 2014). By fostering these concepts, the intention is to aid in the promotion of respect and dignity towards the patients with the goal of increasing the self- esteem within the patient. This approach aligns with the framework of person-centered care (Ekman et al., 2011). How these theoretical concepts complement each other and are applied to PIBA is illustrated in Figure 2.

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12

Figure 2. Overview of the theoretical concepts of PIBA. The first step is to establish patient participation, which is initiated in PIBA, by conversations with the patient about individual needs. The next step is to invite the patient to shared decision-making, which is done by creating a PIBA contract together. Step 3 focuses on making patient autonomy possible via letting the patient initiate, when to use PIBA. The figure also exemplifies how each step algins with the larger framework of person-centred care.

2.3.4 Literature Overview of PIBA

To create an overview of the current knowledgebase of PIBA and similar interventions studied on other patient groups, a comprehensive search was conducted 6 April 2022. The search query is presented in Table 4. The international interest for PIBA has increased, which is evident from the cumulative number of scientific articles published over the last years, see Figure 3. The name for this intervention varies in different studies and in different countries.

Previous names have not fully reflected the purpose and content of the intervention. For

example, - patients themselves being admitted,

- addresses that the patient are in control over the admission, which is not entirely correct either because it is a collaboration between the patient and the

which only highlights that the admission is of a short duration (Eckerstrom, Carlborg, Flyckt, & Jayaram-Lindstrom, 2022). Reflections and discussions regarding an appropriate naming by researchers involved in this specific work resulted in the term - which reflects the patient as the initiator to the admission with a collateral partner on the other side, and the aspect that the care period is of short duration (Eckerstrom et al., 2022). Table 5 gives the reader an overview of number of publications per country, intervention and relates to studied diagnosis group.

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Table 4. Search history. Provides an overview of the relevant articles published on the topic of patient-initiated brief admission and limited to PubMed (described as brief admission, self-admission, patient-controlled admission, self-referral admission, self-referral inpatient treatment and open borders program).

Search

No. Database Search query Items

found Read title/

abstracts

Relevant

1 PubMed brief admission [All Fields] 2 380

2 PubMed "brief admission" [All Fields] 49 49 19

(No. 1-19)

3 PubMed self-admission [All Fields] 26 26 4 new

(No. 20-23) 4 PubMed patient-controlled [All Fields] AND admission

[All Fields]

189

5 PubMed "patient-controlled admission*"[All Fields] 13 13 12 new (No. 24-35) 6 PubMed self-referral [All Fields] AND admission [All

Fields]

84 84 3 new

(No. 36-38) 7 PubMed self-referral inpatient treatment [Title/Abstract] 8 8 2 new

(No. 39-40)

8 PubMed open borders program [Title/Abstract] 56 56 0 new

Read abstracts 234

Included in the literature overview 40

Figure 3. Total number of scientific articles published on the topic of Patient-Initiated Brief Admission between the period 2013-2022. Research on this topic was scarce during the starting point of this research project in 2015. The main source of knowledge was from Helleman et al. (2014a) and Helleman, Goossens, Kaasenbrood, and van Achterberg (2014b).

2013 2014 2015 2016 2017 2018 2019 2020 2021 2022

Cumulative 1 3 4 11 16 22 26 31 39 40

New articles 1 2 1 7 5 6 4 5 8 1

0 5 10 15 20 25 30 35 40 45

Number of articles

Scientific articles about PIBA

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14

Table 5. Provides an overview of published articles by country, intervention name and psychiatric diagnosis.

Country Intervention Name BDP AN SMD SCZ

Stockholm, Sweden

Patient-Initiated Brief Admission or Brief Admission

3 Skåne,

Sweden

Brief Admission by Self-Referral or Brief Admission

6 Jönköping,

Sweden,

Brief Admission 2

Stockholm,

Sweden Self-Admission 4 2

Stockholm, Sweden

Patient-controlled admission 1 1

Netherlands Brief Admission Intervention or Brief Admission

4

Australia Open Borders Programme 2

Norway Patient-Controlled Admission 2

Norway Self-Referral to Inpatient Treatment or Self-Referral Admission

7 Denmark Patient-Controlled Psychiatric Hospital

Admission

6

Total 17 4 18 1

BPD: Borderline Personality Disorder, AN: Anorexia Nervosa, SMD: Severe Mental Disorders, SCZ: Schizophrenia.

2.3.5 PIBA for Different Psychiatric Diagnosis

A total of 40 articles were considered relevant and were included in this literature overview according to psychiatric diagnosis. All articles are also presented in the literature overview matrix, see Appendix 1.

2.3.5.1 Borderline Personality Disorder

A systematic review, including analyses of evidence based components of PIBA, concluded that the crisis intervention can be effective to prevent self-harm and suicide among patients with BPD (Helleman et al., 2014a). In a qualitative interview study from the Netherlands, patients described the contact with the nurses as the most important element of PIBA (Helleman et al., 2014b). A case study reported different purposes with the intervention, initially used to prevent self-harm and suicide and later the overall goal was expanded to also prevent long admissions, dropout from outpatient therapy and to promote autonomy

(Helleman, Goossens, Kaasenbrood, & van Achterberg, 2016). To obtain consensus on the components of PIBA, a Delphi study was conducted (Helleman, Goossens, van Achterberg,

& Kaasenbrood, 2017). One of the components that reached 100% consensus in the Delphi study was that the PIBA plan must be developed together with the patient and mentioned in the care and crisis plan. Further, the panel in the Delphi study emphasized that PIBA should be made available together with access to outpatient care.

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In Sweden, PIBA has been studied in several regions. Westling et al. (2019) conducted a randomized clinical trial (RCT), which did not show any effect in reducing use of inpatients services after 12 months compared to regular psychiatric admissions. The authors concluded that future studies should explore longer follow-up period and both user and health care

to fully understand the effects of PIBA. Their RCT protocol was also presented in a separate article as an aid to the field (Liljedahl, Helleman, Daukantaite, Westrin, & Westling, 2017). N suggest that PIBA provides a constructive and meaningful psychiatric inpatient care, and also reduces stress experienced for the nurses (Eckerstrom et al., 2019). Other studies on healthcare professionals reported that PIBA shifts the focus of the psychiatric inpatient care, from trigger and conflicts to collaboration (Lindkvist et al., 2019) and strengthens patients; which are the main components of person- centered care (Arnold, Wardig, & Hultsjo, 2021). Studies focusing on the patient perspective report that PIBA is viewed as an easily accessible intervention, which can be used to decrease symptoms of anxiety (Eckerstrom et al., 2022; Eckerstrom, Flyckt, Carlborg, Jayaram- Lindstrom, & Perseius, 2020). Patients were interviewed during the implementation phase, highlighted the importance of education for the staff about PIBA and about attitudes of the staff working with PIBA (Helleman, Lundh, Liljedahl, Daukantaite, & Westling, 2018).

Patients experienced PIBA as helpful support in an environment that was perceived as safe (Lindkvist et al., 2021; Lindkvist, Westling, Liljedahl, & Landgren, 2020) and as having a positive impact on daily functioning (Enoksson, Hultsjo, Wardig, & Stromberg, 2021).

Australia has a similar intervention which is called Open Borders program for patients with BPD (Mortimer-Jones et al., 2016). In this program both the patient and healthcare

has been studied through semi-structured interviews and analyzed with thematic analysis (Mortimer-Jones et al., 2019). The themes that were described by both groups were that the benefits of the intervention were: enhanced patient outcomes (including a reduction in self-harming and hospitalization and an increase in self-efficacy), impact of the physical environment, and ways of enhancing service delivery. The study concludes that open borders program empowers patients to self-manage their symptoms while promoting hope and self-determination.

2.3.5.2 Anorexia Nervosa

A systematic review by Strand and von Hausswolff-Juhlin (2015) presented the following rationales behind this intervention: increase patient autonomy, promotion of coping skills, initiation of early help-seeking behavior, avoidance of power struggles, reduction in days spent in inpatient care and in the prevention of coercive measures. The experience of patients with AN showed that they used self-admission to boost healthy behavior, prevent

deterioration and have a relief from an overwhelming situation (Strand, Bulik, von

Hausswolff-Juhlin, & Gustafsson, 2017). Some practical recommendations were presented as outcomes of the interviews, such as introduction of a waiting-list procedure when the room is occupied, clarification of responsibilities for everyone involved and providing information about the rationale of the intervention (Strand, Gustafsson, Bulik, & von Hausswolff-Juhlin,

Patient-Initiated Brief Admission for Emotional Instability and Self-Harm

Patient-Initiated Brief Admission for Emotional Instability and Self-Harm

Joachim Eckerström

From Department of Clinical Neuroscience Karolinska Institutet, Stockholm, Sweden

PATIENT-INITIATED BRIEF ADMISSION FOR EMOTIONAL INSTABILITY

AND SELF-HARM

Patient-Initiated Brief Admission for Emotional Instability and Self-harm

THESIS FOR DOCTORAL DEGREE (Ph.D.)

Joachim Eckerström

POPULAR SCIENCE SUMMARY OF THE THESIS

POPULAR SCIENCE SUMMARY IN SWEDISH

ABSTRACT

LIST OF SCIENTIFIC PAPERS

CONTENTS

LIST OF ABBREVIATIONS

1 INTRODUCTION

2 LITERATURE REVIEW