A patient perspective on recurrent or prolonged contact with psychiatric inpatient care for affective disorder

A patient perspective on recurrent or prolonged contact with psychiatric inpatient care for... Background: The aim of this qualitative study was to explore why some patients receive recurrent or prolonged psychiatric inpatient care, based on the experiences of the patients themselves. Methods: The participants were recruited at an outpatient clinic at the department of psychiatry for patients with affective disorders at Sahlgrenska University Hospital, Sweden. Ten patients, nine women and one man, aged 22–61 years, agreed to participate. A semi-structured interview guide was used during the interviews, which were audiotaped, transcribed, and analyzed using interpretative phenomenological analysis. Results: The four themes that emerged were Difficulties in affective regulation , where the informants reported dif- ficulty in managing their emotions, with the possible consequence of admission to inpatient care; Relational sensitiv- ity, concerning a sensitivity to relationships with healthcare professionals and a need for a secure therapeutic rapport; Resignation, characterized by passivity and depression; and Ambivalence towards responsibility, where ambivalence about their responsibility could lead to failure to initiate change. Conclusions: More options beside inpatient care should be available in cases of an urgent need for help. A stable care structure, good cooperation, and long-term planning based on individual needs are pivotal. In the planning of psychiatric care, consideration must be given to the patient’s relational sensitivity. By encouraging patients to actively seek help, we can counteract their resistance and achieve a more effective contact with psychiatric services. Background of the community. However, there are questions about Psychiatric care in the Western world has been in an whether outpatient care and the municipal support sys- ongoing process of deinstitutionalization since the 1950s tems are adequate for patients with severe mental illness [1, 2]. Larger centralized institutions in the mental health [3]. sector have been discontinued, and the total number of No country has organized its psychiatry without the psychiatric hospitals has been reduced. Instead of mov- possibility of inpatient care, and in decentralized psy- ing patients from their local communities to institutions chiatry, hospital stays have been shortened but the num- for an extended period, efforts are being made to reor - ber of rehospitalizations has increased [4]. Up to 50% of ganize care and place it in the patient’s immediate area. patients in psychiatric inpatient care return within 1 year In Sweden, there has been a vision of decentralized [5]. Many patients do not feel comfortable in inpatient psychiatric care since the 1970s, in which patients should, care, which in the worst case can be seen as a repository as far as possible, be able to live as integrated members for those the open care system cannot take care of [4]. There is a group of patients who spend so much time in inpatient care that it has been considered a new form *Correspondence: peter.sand@vgregion.se of institutionalization [6]. Some researchers argue that a Department of Psychiatry and Neurochemistry, Institute of Neuroscience and Physiology, The Sahlgrenska Academy, University structural reinstitutionalization is taking place, in which of Gothenburg, Sahlgrenska University Hospital, Gothenburg, Sweden the abandoned mental hospitals are being replaced by Full list of author information is available at the end of the article © The Author(s) 2018. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creat iveco mmons .org/licen ses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creat iveco mmons .org/ publi cdoma in/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 2 of 10 other institutions, with an increasing number of beds in has not succeeded in finding a unique risk factor, or forensic psychiatry wards, prisons, and supportive hous- agreed on a single explanatory model [5]. The only ing [2]. The high rate of rehospitalization in inpatient consensus regarding risk factors for future rehospi- care is due in part to lack of care and support, and to the talization appears to be for the factors severity of the absence of a sense of belonging to society [7]. Systematic illness and previous frequent hospitalizations [5, 18], reviews have described how a well-developed outpatient findings that may be of limited clinical value. Moreover, and support system can reduce rehospitalizations [8, 9]. the patients who are hospitalized frequently have many However, the fact that rehospitalizations only decreased variables in common with those who are not, and there to a certain extent was interpreted as an indication that are few factors that separate the patient groups in stud- some patients with certain conditions will always need ies [16]. hospital care. Alternative crisis resolution or manage- ment in a homelike environment with access to mobile emergency teams can be more cost-effective, reward - Patients’ perspectives on recurrent or prolonged inpatient ing, and popular alternatives to inpatient care for many care patients in crisis [10–13]. However, it is believed that Webb et  al. [16] argued that there are scientific chal - these efforts should be seen as a supplement to inpatient lenges in the search for general risk factors for rehos- care, as some patients do need hospital care when their pitalization, as the studies often differ in methodology, condition is more severe. definitions, and examined care systems. The failure of previous research to find obvious reasons for recur - rent or prolonged inpatient care is made worse by the Risk factors lack of qualitative research and studies of the patient’s There seems to be a group of patients who are treated perspective on the problem [6]. Psychiatry differs from more extensively in inpatient care than would be justified other areas of healthcare, since the cause of psychiatric on the basis of the psychiatric clinical picture. As this may illnesses is more contextual and individual, and clear indicate an inadequate health care system causing patient quantifiable and causal relationships are rarely found. suffering, extensive research has been conducted over the The fact that different studies have found different last 30  years on risk factors for rehospitalization [5]. In causes of prolonged inpatient care suggests that this is a review investigating causes of rehospitalization, clinical a complex problem that depends on the context. When risk factors such as schizophrenia, personality disorder, dealing with contextual issues, qualitative research is and addiction were found, but also social factors such as valuable for gaining understanding [19]. education and network, and care-related factors such as Smith [18] investigated how the perceived problems accessibility and continuity [6]. One study found that lack of a group of patients contributed to their rehospitali- of support or negative emotions from the patient’s family zation into inpatient care. Patients described that inad- and social network was a key factor behind rehospitali- equate support or conflicts within the family or social zation [14]. In another study the role of the care system network are central causes, but also unsafe housing and was investigated, and poorly planned discharges and lack relapse in addiction. However, the main risk factors of follow-up were identified as risk factors [9]. A third suggested by the patients as obstacles to the care they study examined what distinguished patients who were needed were healthcare issues: they lacked a point of recurrently treated in inpatient care and found risk fac- contact in the healthcare services and reported inade- tors such as chronic illness states, addiction, lack of social quate response, accessibility, and continuity. Mgutshini network, and social isolation [15]. In a follow-up study, [5] compared patients’ perspectives on rehospitaliza- the severity of the illness was found to be the underlying tion in inpatient care with those of healthcare profes- risk factor that distinguished this patient group [16]. One sionals, and reported that many patients emphasized study used a statistical model that would better reflect situational factors such as isolation, exclusion, and the recurrent progress of mental illness; the study found inadequate support from the environment. In contrast, that an increased risk of rehospitalization was associated the healthcare professionals focused largely on medi- with the diagnosis of schizophrenia and personality dis- cal factors, such as lack of compliance with treatment, order, addiction, low level of education, living alone or in diagnosis, or addiction. Patients also expressed contex- the metropolis, unemployment, and low levels of func- tual understanding and that social stressors often trig- tioning at discharge [17]. gered crises. The study indicates that there are no clear Different studies have highlighted various factors that reasons for the problem of rehospitalization in inpa- could lead to recurrent hospitalization, with sometimes tient care, but shows the importance of understanding contradictory variations in clinical, social, and health- the patient’s perspective and context. related findings. Despite considerable efforts, research Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 3 of 10 Aim at gaining a picture of the perceived life-world of the Existing research shows ambiguous results concerning informants [20]. which patients are at risk of excessive inpatient care and for what reasons. Recurrent or prolonged hospi- Procedure talizations are rarely motivated as the best treatment The participants were asked to attend the interview at for the psychiatric illness, suggesting a deficient care their current clinic, and nine did so. The tenth interview system that causes suffering and impaired quality of was conducted in the participant’s home. The face-to- life for the patients; furthermore, these hospitalizations face interviews were conducted in January and February incur high costs and reduce the number of inpatient 2017 and lasted between 55 and 80 min. In-depth follow- beds available for other patients who are in need of up questions were used to elicit more detailed responses. inpatient care. More studies based on the patients’ own The interviews were performed according to the prin - perspectives could enhance our understanding of the ciples described by Kvale and Brinkmann [20], with an problem and improve the way healthcare meets these openness to the perspective of the informants and an patients’ needs. Consequently, the aim of the study was active deepening of their responses, in order to obtain a to explore why some patients receive recurrent or pro- rich description of their experience of the investigated longed psychiatric inpatient care, based on the experi- phenomenon. ences of the patients themselves. Data analysis The interviews were audiotaped, transcribed, and ana - lyzed using interpretative phenomenological analysis Methods (IPA), which is considered a useful method for clarifying Participants the informant’s perspective [21]. IPA focuses on explor- The participants were recruited at an outpatient clinic ing how people experience and understand important at the department of psychiatry for patients with affec - aspects of their lives. The main theoretical basis for IPA tive disorders at Sahlgrenska University Hospital, Swe- is phenomenology, which emphasizes the lived experi- den. Ten patients, nine women and one man, aged ence of a phenomenon as a core of knowledge of the 22–61 years, participated. phenomenon in question. The second theoretical basis Seven of the participants were in the care of the per- for IPA is hermeneutics, which emphasizes the inter- sonality syndrome team, including patients with per- pretative nature of humans, and posits that experiences sonality disorders and the remaining three were in arise in a meaningful context that needs to be taken into the care of the anxiety and depression team. Patients account. An interpretative phenomenological analysis includes in the study were diagnosed with either is conducted with an awareness of these two aspects of depression, anxiety or personality disorder. Patients a phenomenon, moving between an exploration of the with psychosis or addiction do not attend the outpa- individual’s experience and an analysis of how it is inter- tient clinic. All participants were assessed as in need of preted, both by that individual and by the researcher. care between October 2015 and October 2016, on the The interviews were analyzed according to methodo - basis of the number of visits to the psychiatric emer- logical guidelines for IPA [21]. The interview transcripts gency department, the number of admissions to inpa- were first read through several times to become famil - tient care and the number of care days. The number of iar with the informant’s perspective, and then analyzed visits to the psychiatric emergency department for the one at a time, Subsequently, descriptive comments, participants varied between 0 and 14 (median = 4). The with phenomenological focus, were written in the right number of inpatient admissions varied between 2 and margin. In the next step, these experiences were inter- 12 (median = 5). The number of care days ranged from preted, and more abstract concepts were written in the 25 to 155 (median = 85.5). left margin. The conceptual comments were collected in a single document and grouped in preliminary themes. A “mind map” was constructed in order to have an over- Data collection view for patterns between the different themes, allowing A semi-structured interview guide was used during the a thematic structure to be created for each interview. The interviews. The interview guide was created in the light analysis then continued according to the guidelines [21] of previous research, to cover the most relevant areas with the next interview, with a systematic focus on its for the purpose of the study: psychiatric problems, the individual nature, so as not to be unduly affected by the experience of psychiatric care, the acute crisis, the social analysis of previous interviews. When all the interviews situation, and the informant’s thoughts on healthcare. had been analyzed, the individual thematic structures The structure of the standard interview guide was aimed Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 4 of 10 were studied to find overall patterns in the material. The difficulties in affective regulation, where the informants focus was on establishing a thematic structure that, based reported difficulty in managing their emotions. The four on all the interviews, conveyed something meaningful subthemes describe how difficulty in affect regulation about the phenomenon, but was also grounded in indi- and insufficient individual support are likely to lead to vidual experiences. Some themes appeared as pivotal, hospitalization. and both the difference between them and the similar - ity with the underlying subthemes became clearer. A Inadequate access to psychiatric care first theme structure was established and the result was Many informants experienced a lack of access to psychi- then documented. During this writing process, the the- atric care as a central problem, expressing frustration matic structure was further clarified. Some themes and that it was difficult to get the help they needed in  situ - subthemes lacked homogeneity, others could be merged, ations of mental crisis. They described how a difficulty and finally the thematic structure presented below was in affective regulation could escalate into a situation that created. resulted in hospitalization. Many expressed a wish for help in  situations causing psychological distress before Results reaching the stage of needing protection, that is, a level of In this study, the thematic structure (see Table  1) refers care between outpatient visits and inpatient care. to the central psychological phenomena as the stories of You are taken seriously only when you have taken the informants were perceived. In the description of the an overdose, it has to go so far before you get help. subthemes, individual examples are then given as illus- Sometimes you want help to avoid sinking as deep trations of what can happen when a person with this as you can go, but that help does not turn up before problem or need meets the psychiatric care providers. then, it becomes like a limbo land, where you are all The ambition has been to describe something in gen - alone and wait for it to explode. eral in the informants’ stories, and to express the indi- vidual experiences within the framework of this overall Several informants expressed a need for other forms of structure. emergency care than inpatient care, and suggested that alternatives such as emergency calls could be of great Difficulties in affect regulation help. All informants reported some kind of mental fragility as One night when you are in bed and have masses of a more or less central problem in their lives, and as some- anxiety and have picked up tablets from the phar- thing that frequently triggered more urgent care needs. macy and feel that, well, there is one more alterna- Most informants described mental crises that they had tive, I can actually call somewhere, or maybe they difficulty handling on their own, with a deteriorating have a mobile team./…/In a dream scenario, that mental state that often led to loss of emotional control would have been something. and breakdown, which placed them at risk of hospi- talization. The underlying problem is best described as Limited continuity of care Many informants described a low degree of continuity Table 1 Overview of the thematic structure and structure in their contacts with the care services. Themes Subthemes They experienced that repeated changes of psychia - trists made this contact more complicated, and they Difficulties in affect regulation Inadequate access to psychiatric care described how each healthcare contact person made dif- Limited continuity of care ferent assessments and plans for them. The informants The importance of con- described being allowed little participation in or under- versational supportive therapy standing of intervention decisions, and a lack of conti- Passive inpatient care nuity with other parts of their care provision. They also Relational sensitivity Unsatisfactory encounters mentioned how this kind of ambiguity contributed to an Destructive actions experience of uncertainty in  situations of mental stress, Resignation Insufficient active care which further complicated the affect regulation and risk Lack of responsibility Inner resistance and inad- of deterioration. equate support Insufficient guidance The majority of my contact with psychiatry, both in The themes describe the psychological problems of the informants, and the outpatient care and inpatient care, have been evalu- subthemes describe the challenges that may arise in the course of psychiatric ations based on very short input from my side and care Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 5 of 10 very quick decisions from the healthcare provider. therapist] more often and it has worked well. I have not had to seek refuge in the hospital, and I know I’ll One informant, unlike most others, described bet- meet [my therapist] again in 3 days. ter contact with healthcare and a sense of security as a result of concrete planning. The informant described how the team worked in a coordinated manner and in Passive inpatient care dialogue with him, went through his different needs; and One subtheme that was considered to be particularly rel- he described how that involvement made him feel safer evant in this study was the informants’ recurring descrip- in asking for the help he needed and therefore felt he tions of a passive inpatient care that they perceived to be had the power and motivation to work for a change. His of limited help. Several informants described hospitali- experiences illustrate the perceived difference it makes zations where neither active treatment nor support had to have a higher degree of continuity and structure in the been initiated in preparation for discharge, which seemed contact with healthcare. to increase the risk of rehospitalization, because of diffi - Today, it feels like it has become a slightly bigger step culties to regulate affects that led to the previous admis - forward with the contact here./…/The fact that the sion remained. occupational therapist organizes job training and There was no transfer process, you just got thrown the contacts outside of healthcare, that we talk it out in some way, and then it became too scary, and through, it begins to move forward from that point nothing worked and I got anxiety from it, and then I of view./—/Because my occupational therapist will got anxiety from lots of other things, and then it was now be going on maternity leave, we have discussed just too much. I don’t know why it continued in that a replacement for her./…/I will get a psychologist/…/ way, I did not like being admitted, it was not that I as the next step in this treatment between myself longed to go back, but when it became uncontrolla- and outpatient care. ble, there was no other place to turn to. The importance of supportive therapy Relational sensitivity Many informants highlighted supportive therapy as Several informants expressed an emotional preoccupa- something that helped them manage more challeng- tion with their relationship with healthcare profession- ing emotions on their own. They sometimes described als in addition to the substantial need for care. They how the therapy put their problems into perspective, described a sensitivity to the relationship and a need for but mainly they highlighted the supportive function. The a safe contact. Their relational sensitivity often interacted informants felt that the regular therapy helped them to with difficulties in affect regulation in a complicated cope with stressful thoughts and feelings that would oth- way, where difficult emotions partly highlighted a need erwise escalate, and that they could accommodate and for support and increased their sensitivity, which made tolerate stressful experiences if they had an appointment it difficult to establish the safe relationship needed. Two for supportive therapy. Moreover, several informants subthemes emerged to describe how sensitivity to the expressed the need for more treatment, both generally relationship could increase the risk of hospitalization: the and during more difficult periods. first subtheme highlights the difficulties that arose when If I can’t talk to anyone about how I feel, I’ll build it psychiatric care failed to create the rapport required for up within me, and then there will be a lot of cata- a functioning care relationship; the second subtheme strophizing, there will be a snowball effect, and eve - reflects how the breakdown of healthcare encounters rything will be chaos. That part has been important, could escalate into destructive actions. to have someone who listens, and who you feel you are not burdening in the same way, I can say what I want. Unsatisfactory encounters Several informants talked about recurrent situations in Most informants were pleased with the supportive contact with psychiatric care, in which the two had dif- therapy itself, but many asked for more, longer, or more ficulty building rapport, and where care was perceived available treatment, and did not find that the structure to have failed to adapt to the patient’s relational needs. with 45  min sessions per week suited their needs. One The informants expressed a frustration about the inad - informant described a flexible solution which had a sup - equate meetings and felt misunderstood and not listened portive functioning. to; they described one-sided interactions in which they Since I got home [from the ward] I have seen [my were not met in a mutual conversation. The more of these Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 6 of 10 types of meetings an informant described, the worse the depressed mood that was difficult to influence. They healthcare was perceived to function. experienced a resignation and hopelessness, and unlike the other informants, they rarely described themselves iTh ngs that may be small, like wanting to get in as seeking help. The psychiatric care services were rela - touch with your psychologist, when it doesn’t work, tively absent in their stories, and did not seem to have it adds a little to my heap of things./—/There have actively attempted to reach them in their most depressed been so many changes in my contact with psychia- state. This risked perpetuating their situation, leading to try, which has been difficult in several ways, it hasn’t recurring depressive relapse and hospitalization. One been difficult just because of the way I feel, but it has informant who had never been voluntarily hospitalized also been difficult as a result of the way I have been to inpatient care said that, in her worsened condition, she treated and not taken seriously. did not want help and that she had difficulty believing in change. Destructive actions I have tried a lot of things, both medications and The pattern of encounters reaching a deadlock could also therapy, and nothing happens so I feel very resigned. escalate and lead to more destructive actions. Several I no longer believe that it will be ne fi , even though informants described situations where they asserted their I wish for it I don’t have the energy./…/I used to own perspective and the psychiatric care staff maintained believe that it will be fine, but it feels so hard when theirs, without succeeding in changing the interaction it’s not getting better. or responding in a different way to the patient’s point of view. These loaded situations could result in destructive Another informant described a pattern that had per- actions, which were often intentional, leading to hospi- sisted for several years, in which in a desperate res- talization. One informant gave an example of how drastic ignation she took an overdose, hoping to get medical it can be in more difficult situations, when the health - treatment in the psychiatric ward. The medicine she was care professional does not succeed in creating a mutual given seldom made a difference, and her hope gradually discussion: in her frustration she expressed herself with changed to resignation that risks leading to new destruc- action. tiveness. Thus, the psychiatric care service does not seem to have succeeded in reaching the patient more actively Then I said, “you can’t discharge me, I’m not feeling and changing this deadlock. well,” but they said, “but we don’t see that there is a need for you to stay any longer.” I got upset and cried, Ambivalence towards responsibility and said, “okay, then I discharge myself,” and left and All informants reported some problems with taking swallowed a bottle of pills/…/and they helped me to responsibility for their own difficulties, such as seek - accident & emergency. So it was really tough that ing the help they needed, and taking into account their they didn’t listen. limitations and needs. This difficulty differs from the pre - viously described difficulties because it was about situa - tions that the informants increasingly needed to manage Resignation by themselves. Difficulties in taking responsibility could Most of the informants’ stories focused on problematic lead to further deterioration. Two subthemes emerged interactions with care or difficulties in managing their to describe how the insufficient responsibility of the affect regulation. However, three informants had different patient could lead to hospitalization. One subtheme illus- experiences, where they did not have the same approach trates how seeking help is hampered by inner resistance to the psychiatric healthcare services. Their stories were and inadequate support; the other reflects how insuffi - characterized by passivity and depression, and resigna- cient guidance makes it harder to overcome ambivalence tion appeared to be the fundamental difficulty. These towards long-term responsibility. informants expressed no great dissatisfaction with the availability of healthcare or with the contact itself, and Inner resistance and inadequate support they had difficulty expressing what they wanted. Several informants described how they could deny some The subtheme describes how this resignation, together of their limitations and difficulties, which could lead to with an insufficient active care provision, risks deepening mental setbacks and reduce the likelihood of making a the depression and necessitating inpatient care. constructive request for help. Many also felt a resistance to seeking help, as they were ashamed of their problems Insufficient active care and worried about being rejected. Difficulties in accept - Unlike many informants, who mainly described an oscil- ing their problems and asking for help, combined with lating anxiety, these informants spoke of a more constant Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 7 of 10 an inadequate response from healthcare professionals, responsibility, not having to think, not having to feel, posed obstacles for those at risk of a deteriorating mood; but just to like slide along, but I don’t want that kind eventually they would seek help in a more acute manner, of life. which could result in inpatient care. Many informants Several informants gave examples of how ambivalence described a more manifest opposition to seeking help, is an inner process that is not easily accessible to psy- and the limited availability and sensitivity of the response chiatric care professionals. One informant spoke of how from healthcare services strengthened their resistance, studying, through the commitment it required, helped which risked them being pushed to destructive help seek- her to deal with her problems in a different way. ing strategies. Until then, I could have been ill any length of time, I don’t want to take a place, it feels like I’m doing it but since I began studying, well nowadays I don’t unnecessarily, that I take up a place somebody else actually want to be in hospital, or rather I don’t could have./—/It’s very difficult to seek help, and have time because I’m going to take a home exam, I especially to the emergency department, and I would have something else. like someone to say, “it’s fine that you’ve sought help, now we’ll get to grips with this and try to make the best of the situation.” Discussion Need for structured support The difficulties in affect regulation was the central area of Insufficient guidance need described by the informants, combined with a risk Several informants described situations where they of inadequate support producing a deteriorating mental needed to choose to resist destructive solutions, and state and inpatient care. The most explicit wish expressed where psychiatric care could affect the outcome to a lim - by the informants was for an increased availability of ited extent. The informants seemed ambivalent about emergency care when they were in urgent need of help, their responsibility and the effort required to act in a rather than having to become ill enough to be hospital- long-term constructive way, which increased the risk of ized; they wanted alternatives to inpatient care in these the destructive processes of mental deterioration that situations. This is similar to what was found in previous could lead to inpatient care. A recurring narrative of studies, where patients, based on their perceived needs many informants was that they did not get the support in mental crisis, requested alternatives to hospital care, they needed in situations they could not master and that with safe environments, access to counseling support, a good deal of their energy was consumed in trying to involvement, and prompt accessibility [10]. Other strate- handle this. Where psychiatric care was available it did gies to prevent hospitalization is acute mobile teams, or not seem to have guided them constructively in what access to an emergency phone, both described as help- they both could and needed to focus their energy on and ful in previous studies [7, 22]. Research reviews provide do on their own. Several informants described situations an impression that such requests can work well in prac- where psychiatric care services had suggested particu- tice, as different mobile teams and enhanced crisis man - lar actions, but they found it an effort to overcome their agement in the home environment can serve as effective resistance to making the suggested changes. and appreciated alternatives to hospital care for up to I really need to sleep for example, but when I’m in 80% of the emergency cases [11–13]. Thus, it would be hypomania, the last thing I want to do is sleep, so an important area of improvement for psychiatric care to that’s a bit difficult, to succeed in doing what you’re provide alternative emergency support with good acces- supposed to do and not giving up, that’s what’s hard- sibility, in order to effectively address the needs of the est. patient group. It could also result in reduced pressure on emergency care and inpatient care, and enable better One informant described difficulties in dealing with her accessibility for those whose illness state requires inpa- concerns and needing a soothing response. She described tient care. how, in anxious times, she doubted her ability to take Overall, many informants expressed the need for care of herself and acted self-destructively in order to be increased support, in addition to emergency availabil- taken care of in the ward. This she regretted afterwards, ity, and said that a lack of continuity and structure in when she “thought with my adult mind,” as she phrased their encounters with psychiatric care contributed to it. their difficulty in managing their mental illness. There has been criticism of a psychiatric system which, I take a relapse into the role of the patient,/…/in because of insufficient continuity, responds to crises order to make things bloody easy. Not having to take Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 8 of 10 Need for active care with repeated hospitalization, where some researchers In the narratives of three informants, a resignation was argue that more long-term and coordinated support prominent, and this subgroup of patients with more such as case management is more efficient and helpful depressive disorders probably have somewhat different [7]. Intensive case management has also been shown to needs. These patients would benefit from a more active reduce the extent of inpatient care [8]. Some patients psychiatric care which takes responsibility for initiating are considered to have been left stranded in the wake of change. Efforts aimed at an increased agency and a more modern psychiatry, since the former institutions have active and social everyday life have been shown to lead to not been replaced with a sufficiently developed system better self-esteem and increased quality of life for unem- of community care and support, and the collaboration ployed persons with severe mental health problems [27]. between psychiatric and community care, employment The commitment to push for a change needs to come offices and social insurance organizations is lacking [1 , from the outside, and it would probably be constructive 3]. Some researchers argue that these patients primarily to focus on breaking their resignation and stimulating need a coherent psychiatric care chain, where collabo- their agency. rating organizations work in coordination with all areas of need [11]. Psychiatry would probably stand to gain from focusing on the situation for this patient group, with an improved Need for guidance care structure and longer term planning based on indi- Several informants described a tendency to deny their vidual needs. Increased access to psychotherapy is an difficulties and resistance towards seeking help. Research initiative that could reduce the reliance on inpatient care, has shown that barriers to treatment are a key ques- and there could be more active work in the inpatient set- tion: where patients did not feel well-treated and cared ting to change the circumstances that contributed to the for, they showed a resistance to seeking care when individual’s hospitalization. An approach similar to case needed, and an increased risk of mental deterioration management, in which the different healthcare services and forced hospitalization [18]. The informants in this cooperate to create a long-term sustainable situation study expressed something similar, and many did not with adequate support and care, based on the needs of seek help when they needed it because their resistance the patient, could increase the patient’s quality of life and increased after having previously felt rejected and belit- be cost-effective. tled. Increased availability would make it easier to seek the help they need, but many patients would also ben- efit from a more active welcome for those seeking help. Need for a safe relationship Similarly, as an increased availability and continuity can Many informants described repeated meetings with be constructive and cost effective, encouragement to seek healthcare professionals who showed inadequate mutu- help could probably contribute to a more successful care ality, where they felt misunderstood and not listened to, experience for this patient group. It would likely reduce and they expressed the need for safe relationships regard- the risk of destructive behavior, and patients could be less of access to support activities. Research shows the more effective cared for if they sought help at an earlier importance of an adequate treatment alliance to achieve stage. satisfactory treatment outcomes in psychiatric care [23]. Several informants described an ambivalence towards In a study of what patients in both inpatient and outpa- the effort and the responsibility that came with demand - tient settings considered to be good psychiatric care, ing situations. In one of the studies of patients with low both groups emphasized the quality of how they were treatment efficacy, they were described how they fre - treated as a person, and the importance of feeling under- quently were ambivalent between wanting to be an stood [24]. Studies of patients for whom treatment effi - independent person and a helpless patient [26]. This cacy has been low have emphasized the importance of is similar to what several informants expressed in our clearly structured care, but also the importance of cre- study, as they struggled to independently use the tech- ating a safe relationship to be able to work therapeuti- niques they had learned, but also found it difficult to cally [25, 26]. To get therapists to work actively to create seek help and distanced themselves from the helpless- a safe relationship with this patient group, and enable a ness they could present. It would probably be valuable for constructive therapeutic relationship, is likely to be an patients if psychiatric care could clarify this ambivalence, important area of improvement for psychiatric care. It is and guide them in what they need to do independently. necessary to work both with the support structures that Such a change most likely requires a safe relationship the patient needs, and to establish the safe relationships and a functioning support structure. Just as important as within which a change is possible. understanding patients’ immediate need for psychiatric Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 9 of 10 support is to identify what challenges they will eventu- This study examined patients’ perspectives on why ally need to deal with themselves. Providing patients they received so much inpatient care. It would be inter- with the support they need, as well as encouraging their esting to complement the patients’ experiences with own responsibility and effort where necessary, is likely to those of the healthcare staff, and to investigate how increase their ability to become more independent and to they perceive the problems. Another finding that would live as freely as possible. be interesting to study further is the value of creating a safe relationship with this patient group. The creation of the clinical relationship is a complex phenomenon, Limitations and future research yet only one party’s perspective was investigated in this This study has some limitations that should be discussed. study. It would be useful to study more closely how the One was that five potential informants, who had a his - treatment of this patient group appears to the health- tory of a high degree of inpatient care, were reluctant to care staff and what challenges and areas of improve - participate. It would have been interesting to share these ment exist for them. patients’ perspectives on the problem, since their needs were likely to be greater. Another limitation is the number of participants. Conclusions Although the aim of qualitative studies is not to general- In order to avoid deteriorating to the stage of needing ize the results, it is important to point out that more par- hospitalization, more options besides inpatient care are ticipants could have contributed both to more nuanced needed in cases of an urgent need of help. findings and to more in-depth understanding of recur - In order to create a sustainable situation over time, rent psychiatric inpatient care. Since a majority of the with adequate support and care, there is a need for a participants in this study were women, a larger group of stable care structure, good cooperation, and long-term patients had made it possible to focus on possible vari- planning based on individual needs. ations related to gender. It should also be noted that a In the planning of psychiatric care, consideration disproportionate majority of the participants were diag- must be given to the patient’s relational sensitivity. This nosed with personality syndrome. A larger group of is often a prerequisite for breaking a cycle of conflicts patients could have offered richer experiences of frequent and misunderstandings, as well as achieving a safe envi- inpatient care from patients with other types of affective ronment and reciprocal conversation required for con- disorders. structive encounters with psychiatric care. It is important to point out that the participants’ main By encouraging patients to actively seek help, we can problems were personality syndrome or depression and counteract their resistance and achieve a more effective anxiety, and that their experiences of extensive inpatient contact with psychiatric services, with less destructive care are likely to differ from those of patients with psy - behavior. The guidance may also assist in helping patients chotic disorders or addiction. Even if inpatient care can to take responsibility for the challenges they are facing. be a necessary and helpful treatment for patients with affective disorders—as our participants shared experi - Authors’ contributions EB contributed to data collection, data analysis and wrote the initial draft of ences of—social issues and outpatient treatment seem to the manuscript. JS contributed to the study design, qualitative data analysis be essential for the wellbeing for this patient group. Inpa- and interpretation, and reviewed and revised the manuscript. PS conceived tient care may more often be an important part of the of the initial idea for the study, implementation and reviewed and revised the manuscript. All authors read and approved the final manuscript. health care system for patients with psychotic disorders or addiction regardless of contextual factors. It would be Author details interesting to study the experiences of recurrent or pro- Department of Psychiatry, Sahlgrenska University Hospital, Gothenburg, Sweden. Department of Psychology, Gothenburg University, Gothenburg, longed inpatient care in these patient groups. Sweden. Department of Psychiatry and Neurochemistry, Institute of Neuro- Another limitation of the study is the subjective nature science and Physiology, The Sahlgrenska Academy, University of Gothenburg, of the analysis, in which the researcher in an interpreta- Sahlgrenska University Hospital, Gothenburg, Sweden. tive phenomenological analysis inevitably creates one Acknowledgements particular meaning from the material, among other We would like to thank all the patients who participated in this study. Thanks possible meanings. One of the authors works as a clini- should also go to Peter Asplund, Master of Science in Computer Science. cal psychologist, and has psychological knowledge and Competing interests clinical experience that constitutes an understanding that The authors declare that they have no competing interests. might influence the analysis. The motivation to improve Consent for publication patient care could potentially be a driving force for the Consent was obtained from study participants for the publication of analysis in the ambition of finding meaningful patterns anonymized quotations. and potential solutions. Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 10 of 10 Ethics approval and consent to participate 12. Lloyd-Evans B, Slade M, Jagielska D, Johnson S. Residential alternatives to The study was reviewed and approved by the Regional Ethical Review Board acute psychiatric hospital admission: systematic review. Br J Psychiatry. of Western Sweden (Dnr: 1005-16). All participants were informed about the 2009;195:109–17. study by their healthcare contact person by phone and by written informa- 13. Sjølie H, Karlsson B, Kim HS. Crisis resolution and home treatment: struc- tion. They were informed that participation was voluntary and that confidenti- ture, process, and outcome—a literature review. J Psychiatr Ment Health ality would be assured, and they signed a written consent form. Nurs. 2010;17:881–92. 14. Rico R. The effect of social support on hospitalization rates for consumers Sharing of data with severe mental illness: a systematic review of the literature. Masters Authors do not wish to share their data, as relevant parts of raw data are Abstracts International, 54 2015. published in the manuscript reflected in the quotations. 15. Langdon PE, Yágüez L, Brown J, Hope A. Who walks through the’revolving-door’ of a British psychiatric hospital? J Ment Health. 2001;10:525–33. Publisher’s Note 16. Webb S, Yágüez L, Langdon PE. Factors associated with multiple re- Springer Nature remains neutral with regard to jurisdictional claims in pub- admission to a psychiatric hospital. J Ment Health. 2007;16:647–66. lished maps and institutional affiliations. 17. Frick U, Frick H, Langguth B, Landgrebe M, Hübner-Liebermann B, Hajak G. The revolving door phenomenon revisited: time to readmission in 17 Received: 16 January 2018 Accepted: 16 May 2018 415 patients with 37 697 hospitalisations at a German psychiatric hospi- tal. PLoS ONE. 2013;8:e75612. 18. Smith A. Involuntary psychiatric hospitalization: recidivism and patient’s perceived barriers to treatment. Dissertation Abstracts International, 75 References 19. Malterud K. The art and science of clinical knowledge: evidence beyond 1. Fakhoury W, Priebe S. The process of deinstitutionalization: an interna- measures and numbers. Lancet. 2001;358:397–400. tional overview. Curr Opin Psychiatry. 2002;15:187–92. 20. Kvale S, Brinkmann S. 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Égerházi A, Ivánka T, Munk-Jørgensen P, Krogsgaard Bording M, Kawohl 5. Mgutshini T. Risk factors for psychiatric re-hospitalization: an exploration. W, Rössler W, Puschner B. Helping alliance and unmet needs in routine Int J Ment Health Nurs. 2010;19:257–67. care of people with severe mental illness across Europe. A prospective 6. Machado V, Leonidas C, Santos MA, Souza J. Psychiatric readmission: an longitudinal multicenter study. J Nerv Ment Dis. 2017;205:329–33. integrative review of the literature. Int Nurs Rev. 2012;59:447–57. 24. Johansson H, Eklund M. Patients’ opinion on what constitutes good 7. Brems C, Johnson ME, Corey S, Podunovich A, Burns R. Consumer per- psychiatric care. Scand J Caring Sci. 2003;17:339–46. spectives on services needed to prevent psychiatric hospitalization. Adm 25. Bos M, Kool-Goudzwaard N, Gamel CJ, Koekkoek B, van Miejel B. The Policy Ment Health. 2004;32:57–61. treatment of ’ difficult’ patients in a secure unit of a specialized psychi- 8. 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A patient perspective on recurrent or prolonged contact with psychiatric inpatient care for affective disorder

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Copyright © 2018 by The Author(s)
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Medicine & Public Health; Psychiatry; Clinical Psychology; Health Administration
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Abstract

Background: The aim of this qualitative study was to explore why some patients receive recurrent or prolonged psychiatric inpatient care, based on the experiences of the patients themselves. Methods: The participants were recruited at an outpatient clinic at the department of psychiatry for patients with affective disorders at Sahlgrenska University Hospital, Sweden. Ten patients, nine women and one man, aged 22–61 years, agreed to participate. A semi-structured interview guide was used during the interviews, which were audiotaped, transcribed, and analyzed using interpretative phenomenological analysis. Results: The four themes that emerged were Difficulties in affective regulation , where the informants reported dif- ficulty in managing their emotions, with the possible consequence of admission to inpatient care; Relational sensitiv- ity, concerning a sensitivity to relationships with healthcare professionals and a need for a secure therapeutic rapport; Resignation, characterized by passivity and depression; and Ambivalence towards responsibility, where ambivalence about their responsibility could lead to failure to initiate change. Conclusions: More options beside inpatient care should be available in cases of an urgent need for help. A stable care structure, good cooperation, and long-term planning based on individual needs are pivotal. In the planning of psychiatric care, consideration must be given to the patient’s relational sensitivity. By encouraging patients to actively seek help, we can counteract their resistance and achieve a more effective contact with psychiatric services. Background of the community. However, there are questions about Psychiatric care in the Western world has been in an whether outpatient care and the municipal support sys- ongoing process of deinstitutionalization since the 1950s tems are adequate for patients with severe mental illness [1, 2]. Larger centralized institutions in the mental health [3]. sector have been discontinued, and the total number of No country has organized its psychiatry without the psychiatric hospitals has been reduced. Instead of mov- possibility of inpatient care, and in decentralized psy- ing patients from their local communities to institutions chiatry, hospital stays have been shortened but the num- for an extended period, efforts are being made to reor - ber of rehospitalizations has increased [4]. Up to 50% of ganize care and place it in the patient’s immediate area. patients in psychiatric inpatient care return within 1 year In Sweden, there has been a vision of decentralized [5]. Many patients do not feel comfortable in inpatient psychiatric care since the 1970s, in which patients should, care, which in the worst case can be seen as a repository as far as possible, be able to live as integrated members for those the open care system cannot take care of [4]. There is a group of patients who spend so much time in inpatient care that it has been considered a new form *Correspondence: peter.sand@vgregion.se of institutionalization [6]. Some researchers argue that a Department of Psychiatry and Neurochemistry, Institute of Neuroscience and Physiology, The Sahlgrenska Academy, University structural reinstitutionalization is taking place, in which of Gothenburg, Sahlgrenska University Hospital, Gothenburg, Sweden the abandoned mental hospitals are being replaced by Full list of author information is available at the end of the article © The Author(s) 2018. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creat iveco mmons .org/licen ses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creat iveco mmons .org/ publi cdoma in/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 2 of 10 other institutions, with an increasing number of beds in has not succeeded in finding a unique risk factor, or forensic psychiatry wards, prisons, and supportive hous- agreed on a single explanatory model [5]. The only ing [2]. The high rate of rehospitalization in inpatient consensus regarding risk factors for future rehospi- care is due in part to lack of care and support, and to the talization appears to be for the factors severity of the absence of a sense of belonging to society [7]. Systematic illness and previous frequent hospitalizations [5, 18], reviews have described how a well-developed outpatient findings that may be of limited clinical value. Moreover, and support system can reduce rehospitalizations [8, 9]. the patients who are hospitalized frequently have many However, the fact that rehospitalizations only decreased variables in common with those who are not, and there to a certain extent was interpreted as an indication that are few factors that separate the patient groups in stud- some patients with certain conditions will always need ies [16]. hospital care. Alternative crisis resolution or manage- ment in a homelike environment with access to mobile emergency teams can be more cost-effective, reward - Patients’ perspectives on recurrent or prolonged inpatient ing, and popular alternatives to inpatient care for many care patients in crisis [10–13]. However, it is believed that Webb et  al. [16] argued that there are scientific chal - these efforts should be seen as a supplement to inpatient lenges in the search for general risk factors for rehos- care, as some patients do need hospital care when their pitalization, as the studies often differ in methodology, condition is more severe. definitions, and examined care systems. The failure of previous research to find obvious reasons for recur - rent or prolonged inpatient care is made worse by the Risk factors lack of qualitative research and studies of the patient’s There seems to be a group of patients who are treated perspective on the problem [6]. Psychiatry differs from more extensively in inpatient care than would be justified other areas of healthcare, since the cause of psychiatric on the basis of the psychiatric clinical picture. As this may illnesses is more contextual and individual, and clear indicate an inadequate health care system causing patient quantifiable and causal relationships are rarely found. suffering, extensive research has been conducted over the The fact that different studies have found different last 30  years on risk factors for rehospitalization [5]. In causes of prolonged inpatient care suggests that this is a review investigating causes of rehospitalization, clinical a complex problem that depends on the context. When risk factors such as schizophrenia, personality disorder, dealing with contextual issues, qualitative research is and addiction were found, but also social factors such as valuable for gaining understanding [19]. education and network, and care-related factors such as Smith [18] investigated how the perceived problems accessibility and continuity [6]. One study found that lack of a group of patients contributed to their rehospitali- of support or negative emotions from the patient’s family zation into inpatient care. Patients described that inad- and social network was a key factor behind rehospitali- equate support or conflicts within the family or social zation [14]. In another study the role of the care system network are central causes, but also unsafe housing and was investigated, and poorly planned discharges and lack relapse in addiction. However, the main risk factors of follow-up were identified as risk factors [9]. A third suggested by the patients as obstacles to the care they study examined what distinguished patients who were needed were healthcare issues: they lacked a point of recurrently treated in inpatient care and found risk fac- contact in the healthcare services and reported inade- tors such as chronic illness states, addiction, lack of social quate response, accessibility, and continuity. Mgutshini network, and social isolation [15]. In a follow-up study, [5] compared patients’ perspectives on rehospitaliza- the severity of the illness was found to be the underlying tion in inpatient care with those of healthcare profes- risk factor that distinguished this patient group [16]. One sionals, and reported that many patients emphasized study used a statistical model that would better reflect situational factors such as isolation, exclusion, and the recurrent progress of mental illness; the study found inadequate support from the environment. In contrast, that an increased risk of rehospitalization was associated the healthcare professionals focused largely on medi- with the diagnosis of schizophrenia and personality dis- cal factors, such as lack of compliance with treatment, order, addiction, low level of education, living alone or in diagnosis, or addiction. Patients also expressed contex- the metropolis, unemployment, and low levels of func- tual understanding and that social stressors often trig- tioning at discharge [17]. gered crises. The study indicates that there are no clear Different studies have highlighted various factors that reasons for the problem of rehospitalization in inpa- could lead to recurrent hospitalization, with sometimes tient care, but shows the importance of understanding contradictory variations in clinical, social, and health- the patient’s perspective and context. related findings. Despite considerable efforts, research Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 3 of 10 Aim at gaining a picture of the perceived life-world of the Existing research shows ambiguous results concerning informants [20]. which patients are at risk of excessive inpatient care and for what reasons. Recurrent or prolonged hospi- Procedure talizations are rarely motivated as the best treatment The participants were asked to attend the interview at for the psychiatric illness, suggesting a deficient care their current clinic, and nine did so. The tenth interview system that causes suffering and impaired quality of was conducted in the participant’s home. The face-to- life for the patients; furthermore, these hospitalizations face interviews were conducted in January and February incur high costs and reduce the number of inpatient 2017 and lasted between 55 and 80 min. In-depth follow- beds available for other patients who are in need of up questions were used to elicit more detailed responses. inpatient care. More studies based on the patients’ own The interviews were performed according to the prin - perspectives could enhance our understanding of the ciples described by Kvale and Brinkmann [20], with an problem and improve the way healthcare meets these openness to the perspective of the informants and an patients’ needs. Consequently, the aim of the study was active deepening of their responses, in order to obtain a to explore why some patients receive recurrent or pro- rich description of their experience of the investigated longed psychiatric inpatient care, based on the experi- phenomenon. ences of the patients themselves. Data analysis The interviews were audiotaped, transcribed, and ana - lyzed using interpretative phenomenological analysis Methods (IPA), which is considered a useful method for clarifying Participants the informant’s perspective [21]. IPA focuses on explor- The participants were recruited at an outpatient clinic ing how people experience and understand important at the department of psychiatry for patients with affec - aspects of their lives. The main theoretical basis for IPA tive disorders at Sahlgrenska University Hospital, Swe- is phenomenology, which emphasizes the lived experi- den. Ten patients, nine women and one man, aged ence of a phenomenon as a core of knowledge of the 22–61 years, participated. phenomenon in question. The second theoretical basis Seven of the participants were in the care of the per- for IPA is hermeneutics, which emphasizes the inter- sonality syndrome team, including patients with per- pretative nature of humans, and posits that experiences sonality disorders and the remaining three were in arise in a meaningful context that needs to be taken into the care of the anxiety and depression team. Patients account. An interpretative phenomenological analysis includes in the study were diagnosed with either is conducted with an awareness of these two aspects of depression, anxiety or personality disorder. Patients a phenomenon, moving between an exploration of the with psychosis or addiction do not attend the outpa- individual’s experience and an analysis of how it is inter- tient clinic. All participants were assessed as in need of preted, both by that individual and by the researcher. care between October 2015 and October 2016, on the The interviews were analyzed according to methodo - basis of the number of visits to the psychiatric emer- logical guidelines for IPA [21]. The interview transcripts gency department, the number of admissions to inpa- were first read through several times to become famil - tient care and the number of care days. The number of iar with the informant’s perspective, and then analyzed visits to the psychiatric emergency department for the one at a time, Subsequently, descriptive comments, participants varied between 0 and 14 (median = 4). The with phenomenological focus, were written in the right number of inpatient admissions varied between 2 and margin. In the next step, these experiences were inter- 12 (median = 5). The number of care days ranged from preted, and more abstract concepts were written in the 25 to 155 (median = 85.5). left margin. The conceptual comments were collected in a single document and grouped in preliminary themes. A “mind map” was constructed in order to have an over- Data collection view for patterns between the different themes, allowing A semi-structured interview guide was used during the a thematic structure to be created for each interview. The interviews. The interview guide was created in the light analysis then continued according to the guidelines [21] of previous research, to cover the most relevant areas with the next interview, with a systematic focus on its for the purpose of the study: psychiatric problems, the individual nature, so as not to be unduly affected by the experience of psychiatric care, the acute crisis, the social analysis of previous interviews. When all the interviews situation, and the informant’s thoughts on healthcare. had been analyzed, the individual thematic structures The structure of the standard interview guide was aimed Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 4 of 10 were studied to find overall patterns in the material. The difficulties in affective regulation, where the informants focus was on establishing a thematic structure that, based reported difficulty in managing their emotions. The four on all the interviews, conveyed something meaningful subthemes describe how difficulty in affect regulation about the phenomenon, but was also grounded in indi- and insufficient individual support are likely to lead to vidual experiences. Some themes appeared as pivotal, hospitalization. and both the difference between them and the similar - ity with the underlying subthemes became clearer. A Inadequate access to psychiatric care first theme structure was established and the result was Many informants experienced a lack of access to psychi- then documented. During this writing process, the the- atric care as a central problem, expressing frustration matic structure was further clarified. Some themes and that it was difficult to get the help they needed in  situ - subthemes lacked homogeneity, others could be merged, ations of mental crisis. They described how a difficulty and finally the thematic structure presented below was in affective regulation could escalate into a situation that created. resulted in hospitalization. Many expressed a wish for help in  situations causing psychological distress before Results reaching the stage of needing protection, that is, a level of In this study, the thematic structure (see Table  1) refers care between outpatient visits and inpatient care. to the central psychological phenomena as the stories of You are taken seriously only when you have taken the informants were perceived. In the description of the an overdose, it has to go so far before you get help. subthemes, individual examples are then given as illus- Sometimes you want help to avoid sinking as deep trations of what can happen when a person with this as you can go, but that help does not turn up before problem or need meets the psychiatric care providers. then, it becomes like a limbo land, where you are all The ambition has been to describe something in gen - alone and wait for it to explode. eral in the informants’ stories, and to express the indi- vidual experiences within the framework of this overall Several informants expressed a need for other forms of structure. emergency care than inpatient care, and suggested that alternatives such as emergency calls could be of great Difficulties in affect regulation help. All informants reported some kind of mental fragility as One night when you are in bed and have masses of a more or less central problem in their lives, and as some- anxiety and have picked up tablets from the phar- thing that frequently triggered more urgent care needs. macy and feel that, well, there is one more alterna- Most informants described mental crises that they had tive, I can actually call somewhere, or maybe they difficulty handling on their own, with a deteriorating have a mobile team./…/In a dream scenario, that mental state that often led to loss of emotional control would have been something. and breakdown, which placed them at risk of hospi- talization. The underlying problem is best described as Limited continuity of care Many informants described a low degree of continuity Table 1 Overview of the thematic structure and structure in their contacts with the care services. Themes Subthemes They experienced that repeated changes of psychia - trists made this contact more complicated, and they Difficulties in affect regulation Inadequate access to psychiatric care described how each healthcare contact person made dif- Limited continuity of care ferent assessments and plans for them. The informants The importance of con- described being allowed little participation in or under- versational supportive therapy standing of intervention decisions, and a lack of conti- Passive inpatient care nuity with other parts of their care provision. They also Relational sensitivity Unsatisfactory encounters mentioned how this kind of ambiguity contributed to an Destructive actions experience of uncertainty in  situations of mental stress, Resignation Insufficient active care which further complicated the affect regulation and risk Lack of responsibility Inner resistance and inad- of deterioration. equate support Insufficient guidance The majority of my contact with psychiatry, both in The themes describe the psychological problems of the informants, and the outpatient care and inpatient care, have been evalu- subthemes describe the challenges that may arise in the course of psychiatric ations based on very short input from my side and care Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 5 of 10 very quick decisions from the healthcare provider. therapist] more often and it has worked well. I have not had to seek refuge in the hospital, and I know I’ll One informant, unlike most others, described bet- meet [my therapist] again in 3 days. ter contact with healthcare and a sense of security as a result of concrete planning. The informant described how the team worked in a coordinated manner and in Passive inpatient care dialogue with him, went through his different needs; and One subtheme that was considered to be particularly rel- he described how that involvement made him feel safer evant in this study was the informants’ recurring descrip- in asking for the help he needed and therefore felt he tions of a passive inpatient care that they perceived to be had the power and motivation to work for a change. His of limited help. Several informants described hospitali- experiences illustrate the perceived difference it makes zations where neither active treatment nor support had to have a higher degree of continuity and structure in the been initiated in preparation for discharge, which seemed contact with healthcare. to increase the risk of rehospitalization, because of diffi - Today, it feels like it has become a slightly bigger step culties to regulate affects that led to the previous admis - forward with the contact here./…/The fact that the sion remained. occupational therapist organizes job training and There was no transfer process, you just got thrown the contacts outside of healthcare, that we talk it out in some way, and then it became too scary, and through, it begins to move forward from that point nothing worked and I got anxiety from it, and then I of view./—/Because my occupational therapist will got anxiety from lots of other things, and then it was now be going on maternity leave, we have discussed just too much. I don’t know why it continued in that a replacement for her./…/I will get a psychologist/…/ way, I did not like being admitted, it was not that I as the next step in this treatment between myself longed to go back, but when it became uncontrolla- and outpatient care. ble, there was no other place to turn to. The importance of supportive therapy Relational sensitivity Many informants highlighted supportive therapy as Several informants expressed an emotional preoccupa- something that helped them manage more challeng- tion with their relationship with healthcare profession- ing emotions on their own. They sometimes described als in addition to the substantial need for care. They how the therapy put their problems into perspective, described a sensitivity to the relationship and a need for but mainly they highlighted the supportive function. The a safe contact. Their relational sensitivity often interacted informants felt that the regular therapy helped them to with difficulties in affect regulation in a complicated cope with stressful thoughts and feelings that would oth- way, where difficult emotions partly highlighted a need erwise escalate, and that they could accommodate and for support and increased their sensitivity, which made tolerate stressful experiences if they had an appointment it difficult to establish the safe relationship needed. Two for supportive therapy. Moreover, several informants subthemes emerged to describe how sensitivity to the expressed the need for more treatment, both generally relationship could increase the risk of hospitalization: the and during more difficult periods. first subtheme highlights the difficulties that arose when If I can’t talk to anyone about how I feel, I’ll build it psychiatric care failed to create the rapport required for up within me, and then there will be a lot of cata- a functioning care relationship; the second subtheme strophizing, there will be a snowball effect, and eve - reflects how the breakdown of healthcare encounters rything will be chaos. That part has been important, could escalate into destructive actions. to have someone who listens, and who you feel you are not burdening in the same way, I can say what I want. Unsatisfactory encounters Several informants talked about recurrent situations in Most informants were pleased with the supportive contact with psychiatric care, in which the two had dif- therapy itself, but many asked for more, longer, or more ficulty building rapport, and where care was perceived available treatment, and did not find that the structure to have failed to adapt to the patient’s relational needs. with 45  min sessions per week suited their needs. One The informants expressed a frustration about the inad - informant described a flexible solution which had a sup - equate meetings and felt misunderstood and not listened portive functioning. to; they described one-sided interactions in which they Since I got home [from the ward] I have seen [my were not met in a mutual conversation. The more of these Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 6 of 10 types of meetings an informant described, the worse the depressed mood that was difficult to influence. They healthcare was perceived to function. experienced a resignation and hopelessness, and unlike the other informants, they rarely described themselves iTh ngs that may be small, like wanting to get in as seeking help. The psychiatric care services were rela - touch with your psychologist, when it doesn’t work, tively absent in their stories, and did not seem to have it adds a little to my heap of things./—/There have actively attempted to reach them in their most depressed been so many changes in my contact with psychia- state. This risked perpetuating their situation, leading to try, which has been difficult in several ways, it hasn’t recurring depressive relapse and hospitalization. One been difficult just because of the way I feel, but it has informant who had never been voluntarily hospitalized also been difficult as a result of the way I have been to inpatient care said that, in her worsened condition, she treated and not taken seriously. did not want help and that she had difficulty believing in change. Destructive actions I have tried a lot of things, both medications and The pattern of encounters reaching a deadlock could also therapy, and nothing happens so I feel very resigned. escalate and lead to more destructive actions. Several I no longer believe that it will be ne fi , even though informants described situations where they asserted their I wish for it I don’t have the energy./…/I used to own perspective and the psychiatric care staff maintained believe that it will be fine, but it feels so hard when theirs, without succeeding in changing the interaction it’s not getting better. or responding in a different way to the patient’s point of view. These loaded situations could result in destructive Another informant described a pattern that had per- actions, which were often intentional, leading to hospi- sisted for several years, in which in a desperate res- talization. One informant gave an example of how drastic ignation she took an overdose, hoping to get medical it can be in more difficult situations, when the health - treatment in the psychiatric ward. The medicine she was care professional does not succeed in creating a mutual given seldom made a difference, and her hope gradually discussion: in her frustration she expressed herself with changed to resignation that risks leading to new destruc- action. tiveness. Thus, the psychiatric care service does not seem to have succeeded in reaching the patient more actively Then I said, “you can’t discharge me, I’m not feeling and changing this deadlock. well,” but they said, “but we don’t see that there is a need for you to stay any longer.” I got upset and cried, Ambivalence towards responsibility and said, “okay, then I discharge myself,” and left and All informants reported some problems with taking swallowed a bottle of pills/…/and they helped me to responsibility for their own difficulties, such as seek - accident & emergency. So it was really tough that ing the help they needed, and taking into account their they didn’t listen. limitations and needs. This difficulty differs from the pre - viously described difficulties because it was about situa - tions that the informants increasingly needed to manage Resignation by themselves. Difficulties in taking responsibility could Most of the informants’ stories focused on problematic lead to further deterioration. Two subthemes emerged interactions with care or difficulties in managing their to describe how the insufficient responsibility of the affect regulation. However, three informants had different patient could lead to hospitalization. One subtheme illus- experiences, where they did not have the same approach trates how seeking help is hampered by inner resistance to the psychiatric healthcare services. Their stories were and inadequate support; the other reflects how insuffi - characterized by passivity and depression, and resigna- cient guidance makes it harder to overcome ambivalence tion appeared to be the fundamental difficulty. These towards long-term responsibility. informants expressed no great dissatisfaction with the availability of healthcare or with the contact itself, and Inner resistance and inadequate support they had difficulty expressing what they wanted. Several informants described how they could deny some The subtheme describes how this resignation, together of their limitations and difficulties, which could lead to with an insufficient active care provision, risks deepening mental setbacks and reduce the likelihood of making a the depression and necessitating inpatient care. constructive request for help. Many also felt a resistance to seeking help, as they were ashamed of their problems Insufficient active care and worried about being rejected. Difficulties in accept - Unlike many informants, who mainly described an oscil- ing their problems and asking for help, combined with lating anxiety, these informants spoke of a more constant Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 7 of 10 an inadequate response from healthcare professionals, responsibility, not having to think, not having to feel, posed obstacles for those at risk of a deteriorating mood; but just to like slide along, but I don’t want that kind eventually they would seek help in a more acute manner, of life. which could result in inpatient care. Many informants Several informants gave examples of how ambivalence described a more manifest opposition to seeking help, is an inner process that is not easily accessible to psy- and the limited availability and sensitivity of the response chiatric care professionals. One informant spoke of how from healthcare services strengthened their resistance, studying, through the commitment it required, helped which risked them being pushed to destructive help seek- her to deal with her problems in a different way. ing strategies. Until then, I could have been ill any length of time, I don’t want to take a place, it feels like I’m doing it but since I began studying, well nowadays I don’t unnecessarily, that I take up a place somebody else actually want to be in hospital, or rather I don’t could have./—/It’s very difficult to seek help, and have time because I’m going to take a home exam, I especially to the emergency department, and I would have something else. like someone to say, “it’s fine that you’ve sought help, now we’ll get to grips with this and try to make the best of the situation.” Discussion Need for structured support The difficulties in affect regulation was the central area of Insufficient guidance need described by the informants, combined with a risk Several informants described situations where they of inadequate support producing a deteriorating mental needed to choose to resist destructive solutions, and state and inpatient care. The most explicit wish expressed where psychiatric care could affect the outcome to a lim - by the informants was for an increased availability of ited extent. The informants seemed ambivalent about emergency care when they were in urgent need of help, their responsibility and the effort required to act in a rather than having to become ill enough to be hospital- long-term constructive way, which increased the risk of ized; they wanted alternatives to inpatient care in these the destructive processes of mental deterioration that situations. This is similar to what was found in previous could lead to inpatient care. A recurring narrative of studies, where patients, based on their perceived needs many informants was that they did not get the support in mental crisis, requested alternatives to hospital care, they needed in situations they could not master and that with safe environments, access to counseling support, a good deal of their energy was consumed in trying to involvement, and prompt accessibility [10]. Other strate- handle this. Where psychiatric care was available it did gies to prevent hospitalization is acute mobile teams, or not seem to have guided them constructively in what access to an emergency phone, both described as help- they both could and needed to focus their energy on and ful in previous studies [7, 22]. Research reviews provide do on their own. Several informants described situations an impression that such requests can work well in prac- where psychiatric care services had suggested particu- tice, as different mobile teams and enhanced crisis man - lar actions, but they found it an effort to overcome their agement in the home environment can serve as effective resistance to making the suggested changes. and appreciated alternatives to hospital care for up to I really need to sleep for example, but when I’m in 80% of the emergency cases [11–13]. Thus, it would be hypomania, the last thing I want to do is sleep, so an important area of improvement for psychiatric care to that’s a bit difficult, to succeed in doing what you’re provide alternative emergency support with good acces- supposed to do and not giving up, that’s what’s hard- sibility, in order to effectively address the needs of the est. patient group. It could also result in reduced pressure on emergency care and inpatient care, and enable better One informant described difficulties in dealing with her accessibility for those whose illness state requires inpa- concerns and needing a soothing response. She described tient care. how, in anxious times, she doubted her ability to take Overall, many informants expressed the need for care of herself and acted self-destructively in order to be increased support, in addition to emergency availabil- taken care of in the ward. This she regretted afterwards, ity, and said that a lack of continuity and structure in when she “thought with my adult mind,” as she phrased their encounters with psychiatric care contributed to it. their difficulty in managing their mental illness. There has been criticism of a psychiatric system which, I take a relapse into the role of the patient,/…/in because of insufficient continuity, responds to crises order to make things bloody easy. Not having to take Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 8 of 10 Need for active care with repeated hospitalization, where some researchers In the narratives of three informants, a resignation was argue that more long-term and coordinated support prominent, and this subgroup of patients with more such as case management is more efficient and helpful depressive disorders probably have somewhat different [7]. Intensive case management has also been shown to needs. These patients would benefit from a more active reduce the extent of inpatient care [8]. Some patients psychiatric care which takes responsibility for initiating are considered to have been left stranded in the wake of change. Efforts aimed at an increased agency and a more modern psychiatry, since the former institutions have active and social everyday life have been shown to lead to not been replaced with a sufficiently developed system better self-esteem and increased quality of life for unem- of community care and support, and the collaboration ployed persons with severe mental health problems [27]. between psychiatric and community care, employment The commitment to push for a change needs to come offices and social insurance organizations is lacking [1 , from the outside, and it would probably be constructive 3]. Some researchers argue that these patients primarily to focus on breaking their resignation and stimulating need a coherent psychiatric care chain, where collabo- their agency. rating organizations work in coordination with all areas of need [11]. Psychiatry would probably stand to gain from focusing on the situation for this patient group, with an improved Need for guidance care structure and longer term planning based on indi- Several informants described a tendency to deny their vidual needs. Increased access to psychotherapy is an difficulties and resistance towards seeking help. Research initiative that could reduce the reliance on inpatient care, has shown that barriers to treatment are a key ques- and there could be more active work in the inpatient set- tion: where patients did not feel well-treated and cared ting to change the circumstances that contributed to the for, they showed a resistance to seeking care when individual’s hospitalization. An approach similar to case needed, and an increased risk of mental deterioration management, in which the different healthcare services and forced hospitalization [18]. The informants in this cooperate to create a long-term sustainable situation study expressed something similar, and many did not with adequate support and care, based on the needs of seek help when they needed it because their resistance the patient, could increase the patient’s quality of life and increased after having previously felt rejected and belit- be cost-effective. tled. Increased availability would make it easier to seek the help they need, but many patients would also ben- efit from a more active welcome for those seeking help. Need for a safe relationship Similarly, as an increased availability and continuity can Many informants described repeated meetings with be constructive and cost effective, encouragement to seek healthcare professionals who showed inadequate mutu- help could probably contribute to a more successful care ality, where they felt misunderstood and not listened to, experience for this patient group. It would likely reduce and they expressed the need for safe relationships regard- the risk of destructive behavior, and patients could be less of access to support activities. Research shows the more effective cared for if they sought help at an earlier importance of an adequate treatment alliance to achieve stage. satisfactory treatment outcomes in psychiatric care [23]. Several informants described an ambivalence towards In a study of what patients in both inpatient and outpa- the effort and the responsibility that came with demand - tient settings considered to be good psychiatric care, ing situations. In one of the studies of patients with low both groups emphasized the quality of how they were treatment efficacy, they were described how they fre - treated as a person, and the importance of feeling under- quently were ambivalent between wanting to be an stood [24]. Studies of patients for whom treatment effi - independent person and a helpless patient [26]. This cacy has been low have emphasized the importance of is similar to what several informants expressed in our clearly structured care, but also the importance of cre- study, as they struggled to independently use the tech- ating a safe relationship to be able to work therapeuti- niques they had learned, but also found it difficult to cally [25, 26]. To get therapists to work actively to create seek help and distanced themselves from the helpless- a safe relationship with this patient group, and enable a ness they could present. It would probably be valuable for constructive therapeutic relationship, is likely to be an patients if psychiatric care could clarify this ambivalence, important area of improvement for psychiatric care. It is and guide them in what they need to do independently. necessary to work both with the support structures that Such a change most likely requires a safe relationship the patient needs, and to establish the safe relationships and a functioning support structure. Just as important as within which a change is possible. understanding patients’ immediate need for psychiatric Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 9 of 10 support is to identify what challenges they will eventu- This study examined patients’ perspectives on why ally need to deal with themselves. Providing patients they received so much inpatient care. It would be inter- with the support they need, as well as encouraging their esting to complement the patients’ experiences with own responsibility and effort where necessary, is likely to those of the healthcare staff, and to investigate how increase their ability to become more independent and to they perceive the problems. Another finding that would live as freely as possible. be interesting to study further is the value of creating a safe relationship with this patient group. The creation of the clinical relationship is a complex phenomenon, Limitations and future research yet only one party’s perspective was investigated in this This study has some limitations that should be discussed. study. It would be useful to study more closely how the One was that five potential informants, who had a his - treatment of this patient group appears to the health- tory of a high degree of inpatient care, were reluctant to care staff and what challenges and areas of improve - participate. It would have been interesting to share these ment exist for them. patients’ perspectives on the problem, since their needs were likely to be greater. Another limitation is the number of participants. Conclusions Although the aim of qualitative studies is not to general- In order to avoid deteriorating to the stage of needing ize the results, it is important to point out that more par- hospitalization, more options besides inpatient care are ticipants could have contributed both to more nuanced needed in cases of an urgent need of help. findings and to more in-depth understanding of recur - In order to create a sustainable situation over time, rent psychiatric inpatient care. Since a majority of the with adequate support and care, there is a need for a participants in this study were women, a larger group of stable care structure, good cooperation, and long-term patients had made it possible to focus on possible vari- planning based on individual needs. ations related to gender. It should also be noted that a In the planning of psychiatric care, consideration disproportionate majority of the participants were diag- must be given to the patient’s relational sensitivity. This nosed with personality syndrome. A larger group of is often a prerequisite for breaking a cycle of conflicts patients could have offered richer experiences of frequent and misunderstandings, as well as achieving a safe envi- inpatient care from patients with other types of affective ronment and reciprocal conversation required for con- disorders. structive encounters with psychiatric care. It is important to point out that the participants’ main By encouraging patients to actively seek help, we can problems were personality syndrome or depression and counteract their resistance and achieve a more effective anxiety, and that their experiences of extensive inpatient contact with psychiatric services, with less destructive care are likely to differ from those of patients with psy - behavior. The guidance may also assist in helping patients chotic disorders or addiction. Even if inpatient care can to take responsibility for the challenges they are facing. be a necessary and helpful treatment for patients with affective disorders—as our participants shared experi - Authors’ contributions EB contributed to data collection, data analysis and wrote the initial draft of ences of—social issues and outpatient treatment seem to the manuscript. JS contributed to the study design, qualitative data analysis be essential for the wellbeing for this patient group. Inpa- and interpretation, and reviewed and revised the manuscript. PS conceived tient care may more often be an important part of the of the initial idea for the study, implementation and reviewed and revised the manuscript. All authors read and approved the final manuscript. health care system for patients with psychotic disorders or addiction regardless of contextual factors. It would be Author details interesting to study the experiences of recurrent or pro- Department of Psychiatry, Sahlgrenska University Hospital, Gothenburg, Sweden. Department of Psychology, Gothenburg University, Gothenburg, longed inpatient care in these patient groups. Sweden. Department of Psychiatry and Neurochemistry, Institute of Neuro- Another limitation of the study is the subjective nature science and Physiology, The Sahlgrenska Academy, University of Gothenburg, of the analysis, in which the researcher in an interpreta- Sahlgrenska University Hospital, Gothenburg, Sweden. tive phenomenological analysis inevitably creates one Acknowledgements particular meaning from the material, among other We would like to thank all the patients who participated in this study. Thanks possible meanings. One of the authors works as a clini- should also go to Peter Asplund, Master of Science in Computer Science. cal psychologist, and has psychological knowledge and Competing interests clinical experience that constitutes an understanding that The authors declare that they have no competing interests. might influence the analysis. The motivation to improve Consent for publication patient care could potentially be a driving force for the Consent was obtained from study participants for the publication of analysis in the ambition of finding meaningful patterns anonymized quotations. and potential solutions. Brännström et al. Int J Ment Health Syst (2018) 12:29 Page 10 of 10 Ethics approval and consent to participate 12. Lloyd-Evans B, Slade M, Jagielska D, Johnson S. Residential alternatives to The study was reviewed and approved by the Regional Ethical Review Board acute psychiatric hospital admission: systematic review. Br J Psychiatry. of Western Sweden (Dnr: 1005-16). All participants were informed about the 2009;195:109–17. study by their healthcare contact person by phone and by written informa- 13. Sjølie H, Karlsson B, Kim HS. Crisis resolution and home treatment: struc- tion. They were informed that participation was voluntary and that confidenti- ture, process, and outcome—a literature review. J Psychiatr Ment Health ality would be assured, and they signed a written consent form. Nurs. 2010;17:881–92. 14. Rico R. The effect of social support on hospitalization rates for consumers Sharing of data with severe mental illness: a systematic review of the literature. Masters Authors do not wish to share their data, as relevant parts of raw data are Abstracts International, 54 2015. published in the manuscript reflected in the quotations. 15. Langdon PE, Yágüez L, Brown J, Hope A. Who walks through the’revolving-door’ of a British psychiatric hospital? J Ment Health. 2001;10:525–33. Publisher’s Note 16. Webb S, Yágüez L, Langdon PE. 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Journal

International Journal of Mental Health SystemsSpringer Journals

Published: Jun 5, 2018

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