Institutional recovery: a 10-year follow-up of persons after their first psychosis diagnosis. A critical reflexive approach

ABSTRACT

Background: Despite repeated attempts, it has not been possible to reach a consensus on the definition of recovery. In this paper, we use the term “institutional recovery” and focus on the persons’ use of services.

Aim: What type of services were used by men and women who were diagnosed for the first time with psychosis? How did different cut-offs of length of follow up influence the findings?

Method: Interventions for 386 persons diagnosed for the first time with psychosis were followed up for 10 years. Data were collected from registers covering psychiatric and social work services and prisons.

Results: Results varied according to cut-off. Nevertheless, even using the higher cut-off, fifty-five percent of the persons had no stay in 24/7 institutions during the follow-up’s last 5 years. More than 40% had only community-based treatment and support. Fifteen percent had no interventions at all. A 2-year cut-off doubled the percentage of persons with no interventions. No statistically significant gender differences were found.

Conclusions: Institutional recovery could be a useful recovery measure. However, the results from different studies are dictated by choices made by the research team, which should be clarified and discussed.

KEYWORDS:

• First episode
• gender
• social work
• recovery
• follow up
• psychosis

Despite repeated attempts, it has not been possible to reach agreement on the definition either of what recovery signifies (Laudet, 2007; Liberman & Kopelowicz, 2005) or of what any specific state recovery is about (Busfield, 2014; Boyle, 2002). Thus, the probability of persons suffering from severe mental illness (SMI) recovering or being in recovery varies according to different studies, and is not primarily dependent of some state of “illness” or “well-being” related to a specific person or cohort. Instead, the probability of recovery in different studies is dependent of the different definitions of the same terms used by the researchers, the local organization of care and support, the length of the follow-up, societal conditions on the housing and labor markets and the welfare system’s organization. The impact of these non-clinical factors has been stressed in different studies (Priebe, 2015; Warner, 2004).

Table 10. Number and percentage (in brackets) of persons with no contact with psychiatric services and social services for the last 2 and 5 years of the 10-year follow-up.

	Men		Women		Total
Type of intervention	2 years	5 years	2 years	5 years	2 years	5 years
No intervention at all	60 (29)	28 (13)	60 (34)	30 (17)	120 (31)	58 (15)

A possible strategy for coping with these difficulties could be to accept the existence of different, complementary and contradictory definitions and, in every specific case, make it clear which aspects are included in the study, and the pros and cons of these choices. This would mean assuming a critical reflexive position showing the process of construction of the central concepts used in a study (Bourdieu, 2004).

In this paper, we will focus on one specific aspect present in most clinical definitions of recovery; the persons’ use of different services related to their mental health problems. We use the term “institutional recovery” to describe this.

Institutional recovery

Institutional recovery is only about one aspect of the multifaceted and uneven process that recovery is composed of. Quoting Ramon et al. (2007, 113), institutional recovery could be based on the amount or “the absence of ‘resource utilization’ and as one of the criteria used to discuss recovery”.

In several studies, “utilization of psychiatric services (e.g. re-hospitalization)” (Liberman, Kopelowicz, Ventura, & Gutkind, 2002, 257) has been considered as a factor in assessing improvement or clinical recovery (Law, Shryane, Bentall, & Morrison, 2016; Warner, 2004). Also Harding, Brooks, Takamaru, Strauss, and Breier (1987) mentioned that in earlier studies “hospitalized” or ”discharged” could be considered as a measure of recovery (733).

From a personal recovery perspective, Slade et al. (2014) were more ambiguous about what sense to give to a person’s contact with psychiatric or specialized social services. They stressed that recovery “is not about ’getting better’ or ceasing to need support – it is about ’recovering a life’” (14). However, they also underlined that “it is reasonable to assume that a meaningful life is not lived within the boundaries of mental health services…” (13). This shows the need for clarification of what “the boundaries of mental health services” consist of, and to what extent of “boundaries” are acceptable in a meaningful life; in recovery?

Institutional recovery is only about one aspect of the complex recovery journey, and data about groups of people has to be interpreted critically and submitted to individuals’ experiences. In itself, institutional recovery is not about a person’s state, but about his/her situation, which may reflect a state in context.

Length of time outside institutions

Different authors have proposed different lengths of stay outside the total institutions as criteria for recovery. Discharge from psychiatric in-patient institutions has often been considered as one of the signs of recovery (Law et al., 2016). This measure is connected to a problem concerning the appropriate length of stay outside psychiatric institutions after discharge to be considered as a sign of recovery.

To better catch the trajectories of persons in a follow-up, the basis for an assessment of recovery has been extended from “at the time of the follow-up” to longer periods. Torgalsbøen & Rund (1998) used a cut-off at five consecutive years without in-patient stay in their Norwegian study; Harrow, Grossman, Jobe, and Herberner (2005) used 1 year. Bellack (2006), referring to those studies, wrote; “two years is an intermediate criterion that appears to be reasonable, albeit arbitrary” (434). Laudet (2007) mentioned “Other biomedical fields have reached a consensus about what clinical ‘remission’ means (e.g. disease-free for five years in oncology)” (252).

In their efforts to develop a common definition of recovery, Liberman and Kopelowicz (2005) proposed a minimum of two consecutive years without a hospital stay. Their proposal was not primarily based on clinical or scientific considerations, but “because few randomized controlled trials of treatment extend beyond two years…” (740).

Institutional and personal recovery

Even if the definitions of personal recovery tend to minimize the importance of symptomatic recovery, many persons stress their symptoms as one of their main concerns (Andersen & Larsen, 2012; Hansson et al., 2002). However, recovery cannot be reduced to the mere absence of symptoms. As Brekke, Lien, Davidson, and Biong (2017) formulates it, control over symptoms of mental illness might be seen “as a pathway to recovery, but not its essence” (19).

Crises and the exacerbation of symptoms (independently of their causes) may result in hospitalization. Thus, the absence of an intervention might be interpreted as the result of the person’s capacity to manage these problems and the challenges of everyday life. It might also be seen as the result of a combination between this managing capacity and the affordability of a social network and of community-based services adapted to the person’s needs (Gudde et al., 2013). In both cases, it can be argued that avoiding stays in institution-based services reflects an ongoing recovery process (Roe & Davidson, 2017). It could also be seen as the consequence of a lack of adequate in-patient treatment opportunities. However, a stay in such an institution might not automatically be considered as just a sign of the exacerbation of the person’s mental suffering and of a state of “non-recovery”. In specific cases, it can be interpreted as a sign of agency (Ness, Borg, & Davidson, 2014), seeking and obtaining help, as in the case of self-referral to in-patient care. Therefore, it can be a coping strategy and thus a part of a personal recovery journey (Møller Olsø et al., 2016).

Recovery in a changing context

Research should adapt to the important changes connected to de-hospitalization during the last decades (Lamb & Bachrach, 2001; Scull, 1984). New forms of support and care have been developed, such as community-based psychiatric services, meeting places and psychiatric and social support in the person’s home. This development has been considered both as possible parts of a new type of institutional network (Chow & Priebe, 2013; Davidson, 2017;) and of a de-institutionalization process (De Leonardis, Mauri, & Rotelli, 1986).

Therefore, there is a need to widen the range of institutions included in follow-ups and not to focus only on psychiatric in-patient care and not even only on psychiatric services.

To limit a study to different forms of psychiatric care would mean ignoring other important forms of care in today’s institutional landscape. Until recently, some of these interventions were integrated parts of the psychiatric total institutions, but are today “outsourced” to new agents and new professional groups.

Prisons and sheltered housing have been mentioned as part of de-, trans- and re-institutionalization (Chow & Priebe, 2013). Lately a limitation of the analyses to only institutions of “bricks and mortar” has also been criticized (Topor et al., 2015; Ramon et al., 2007) as inadequate in regard to the new institutional landscape.

The downsizing of psychiatric in-patient care institutions, the use of other custodial structures and the development of new services can be expected to influence both the amount and the pattern of care and support. Thus, they should also influence the institutional landscape that follow-up and recovery studies should take in account.

The Swedish institutional landscape after the closing of the mental hospitals

In Sweden, the number of beds in psychiatric in-patient institutions started to decline by the end of the 1960s, and by the end of 1990 the mental hospitals were closed and psychiatric clinics with around 3 000 beds (33/100 000) were organized in general hospitals. In connection with those changes and as an organizational expression for the official policy about citizenship and normalization of the users’ living conditions (Nirje, 1985), a division of responsibilities in the mental health field was established. County councils remained responsible for psychiatric in-patient and community-based treatment. Municipalities became responsible for helping persons with functional impairment because of psychiatric illness in their daily living. They run specialized social teams offering interventions such as sheltered housing, home support and social activities. Their interventions are not based on diagnostic criteria and the staff consists of non-medical professionals, mostly social workers.

Private actors including users’ organizations have gained growing importance in this landscape, but are financed and supervised by the public sector. By law, they cannot run psychiatric in-patient services, but can operate sheltered homes and community-based psychiatric services and home support. Interventions from these private actors, but not from users’ organizations, are included in our data. Private actors outside this publicly financed field are few and they rarely work with persons with SMI.

Aim

In this paper, we will apply the institutional recovery concept to register data collected in a 10-year follow-up study of persons diagnosed with psychosis. Our main questions were as follows: What type of services did persons diagnosed for the first time with psychosis use during the 10 years following their diagnosis? How could the care they received be analyzed in terms of “institutional recovery”? How does gender affects the type and amount of services received? We also wanted to study how the choice of different cut-offs influenced the presented findings.

Method

The local institutional landscape

The participants were recruited through a psychiatric organization in the southern part of Stockholm. The catchment area covered inner-city parts as well as older and new suburban areas. It included a population of 282,000 inhabitants, of which 232,000 were over 18 years old, with important variations in their socio-economic situation.

During the follow-up period, no sensible changes occurred regarding the size of the services offered to the population. There were no important changes on the national or local levels influencing the provision of psychiatric or social services.

The study population

As every citizen in Sweden is given a specific personal code that is used in all his or her contacts with state and local agencies, this it gives a good opportunity for long-term follow-up studies with a limited risk for drop-out.

The data presented in this paper are excerpted from a follow-up study of all the persons who received a psychosis diagnosis F20-F29 (ICD-10) and who were in contact with the psychiatric organization in the local catchment area in 2004 (N = 1501) (Topor et al., 2011). From the original study cohort we selected all persons who received their first psychosis diagnosis during the years 2000–2004 (N = 447) (Table 1).

Fifty-one persons (31 men and 21 women), including 13 suicides (eight men and five women), died during the follow-up period and were excluded from the study. There were no significant differences between them and the rest of the follow-up population according to background data, when controlling for age. Ten of the remaining persons were missing in the databases, probably because they were newcomers to Sweden, and had not received a personal code yet (Table 2).

Thus, we collected information about 437 persons (239 men and 198 women). Forty-four percent of the population (44% of the men and 43% of the women) received their diagnosis before the age of 35, but five percent (3% of the men and 8% of the women) received it when they were 65 or older.

Data and databases

Data were collected from the following registers (Table 3):

Table 1. The study population. Persons with a first psychosis diagnosis, missing and deceased.

	Men	Women	Total
Total population	244	203	447
Lapses in registers	5	5	10
Deceased	31	20	51
The study population	208	178	386

Table 2. Age distribution at first psychosis diagnosis.

Age	Men	Women	Total
- 24	35 (17)	25 (14)	60 (16)
25 – 34	57 (27)	51 (29)	108 (28)
35 – 44	71 (34)	36 (20)	107 (28)
45 – 54	27 (13)	30 (17)	57 (15)
55 – 64	10 (5)	22 (12)	32 (8)
65 – 74	7 (3)	6 (3)	13 (3)
75 –	1 (0)	8 (5)	8 (2)
Total	208 (99)	178 (100)	386 (100)

ꭓ2 = 21.4, p = 0.00.

Table 3. Databases used and data collected and presented in this study.

Databases	Data collected
Statistics Sweden (SCB)	Age and sex
National Board of Health and Welfare – Cause of Death Register	Death and cause of death
National Board of Health and Welfare – Hospital Register	Somatic and psychiatric in-patient care and diagnosis
Stockholm County Council-Psychiatric activity database (PVS)	Psychiatric out-patient care
Swedish National Council for Crime Prevention	Sentences
Stockholm Municipality – Social Services database	Sheltered housing and supported housing

(Topor et al., 2011)

Table 4b. The different types of services included in the follow-up. Community-based services.

Concept	Type of services
Community-based services	A generic term for community-based psychiatric services and social services specializing in mental health issues.
Psychiatric services; community-based (PSCB)	Psychiatric services offering medical and therapeutic interventions in the community.
Social services; Community-based (SSCB)	Municipality run specialized social services for persons with mental health problems. Their interventions consist mostly of individual support in everyday life and social clubs.

Table 4a. The different types of services included in the follow-up. Institution-based services.

Concept	Type of services
Institution-based services	A generic term for hospitalization and 24/7 social care.
Hospitalization	In-patient psychiatric service in a psychiatric clinic.
24/7 social care	Different forms of sheltered housing with staff from the social services present at least during the day-time and on call up to 24/24.

Relying on register data limits the possible variables included in the study but also the number of persons dropping out found in most long-term studies.

Between 0 to 3 persons per year (11 persons and 18 sentences; only men) were sentenced to prison during the follow-up period and we decided to disregard the eventual impact those sentences could have on the follow-up populations’ consumption of psychiatric and of specialized social services. The same assumption was made about persons’ stays in general hospitals for somatic conditions. Between 39 and 72 persons per year spent time there and their median stay was between one and two days.

Thus, in the findings section we focused on interventions from psychiatric and specialized social work services.

All tables and analyses were made by statistical package SAS.

The impact of choices

In accordance with what we previously presented as a necessary critical reflexivity in the presentation and discussion of findings, we conducted alternative calculations to clarify the impact of the research team’s choices of time frame on the results presented.

Gender

The persons’ gender has been pointed out as important in relation to mental health and illness (Nasser, Walders & Jenkins, 2002). Compared to men, women had a higher age of onset, they were older at first hospitalization and had a better response to neuroleptics. They also mentioned a less severe course of illness, and a better premorbid competence level for women. They stressed the importance of incorporating gender factors into research analysis. Despite this, most recovery studies do not take into account the gender of the persons when presenting their results (Harding, 2005). In this paper, we present all our results according to gender.

Ethics

The study was approved by The Regional Ethical Review Board in Stockholm in 2005 (ref. 2005/2: 1) in 2009 (ref. 2009/806–32) and in 2015 (ref 2015/1155–32).

Results

We will first present the findings for the last 5 years of the follow-up. Then we will present findings when the cut-offs were changed.

Type of interventions

We report four types of interventions divided into institution-based and community-based services and into psychiatric and social services. We start by presenting what a contact with those services represents in our data (Table 4a and Table 4b).

Persons receiving institution-based services

Stays in psychiatric in-patient care (hospitalization) and in 24/7 social institutional care could both be taken as a proxy for hospitalization in the old institutional landscape. Although it is important to notice that 24/7 social institutions are formally not considered to offer treatment but support, they have no locked doors and the users have their own room or apartment with their own key. The median stay in psychiatric in-patient care was 20 days. Stays in 24/7 social institutional care usually last longer, from some months up to years, as they are residential accommodations (Table 5).

A total of 171 persons (45%) were in institution-based services at some time during the actual period. Of these persons, 142 (37%) were hospitalized at least once.

Seventy persons (18%) lived for a period in 24/7 social institutions. A majority of people living in those institutions also had at least one period of hospitalization. Forty-one persons (11%) had periods of institutionalization both in psychiatric and in social institution-based services.

A majority of the follow-up population, 215 persons (56%), had no stay in institution-based care.

Persons receiving community-based interventions

Community-based psychiatric interventions (PSCB) consisted of treatment including medication, as well as psychotherapeutic and/or supportive interventions. They could occur at the home of the user or at the community-based open care unit. Community-based social interventions (SSCB) consisted mostly of support in daily living tasks in the persons’ home, but also support in social life (meeting family members, shopping, going to coffee shops or other recreational occupations).

The extent of community-based psychiatric interventions may vary from between one encounter a year to a few each week. Community-based social interventions at the persons’ home occurred usually from one to two and up to six times a week (Table 6).

A majority, 319 persons (83%), had community-based interventions, while 315 persons (82%), received interventions from the PSCB during the five to 10 years after being diagnosed with psychosis.

One hundred persons (26%), had interventions from SSCB. This may be seen as a sign of the presence of social services in the everyday life of a non-negligible part of the follow-up population. Nearly all (91 persons) having interventions from SSCB also received interventions from PSCB. Four persons (1%) had interventions only from the SSCB.

Persons receiving community-based intervention and without institution-based interventions

We will now focus on the 215 persons (56%) who had no institution-based intervention at all. A majority of them received treatment and support interventions in the community (Table 7).

A total of 157 persons (73% of the persons without 24/7 institutionalization and 41% of the total follow-up population) received care and support only from community-based services.

155 persons (40% of the study population) had interventions from PSCB and 33 (9%) had support from SSCB. All but two persons receiving support from SSCB also received interventions from PSCB.

No interventions

The vast majority of the persons in the follow-up had some form of intervention related to mental health problems during the last 5 years of the 10-year follow-up. Still, 58 persons (15%) had no intervention from either institution-based or from community-based services during the same period.

The consequences of the cut-off for the findings

As we argued in the introduction, research might have a tendency to reify its results as simple reflections of an objective world and forget the researchers’ part in the creation of their findings. Thus, we studied the consequences of two different point prevalence periods.

Institution-based services

Just by changing the 5-year cut-off to 2 years, the number of persons with experience of institutionalization shows a clear change from 158 (45%) to 104 (28%) (Table 8).

Only community-based interventions

The different cut-offs also influence the presented use of community-based services for persons without any 24/7 institutionalization occasion (Table 9).

Here, even though non-negligible when it comes to the amount of contact, the difference between two and five consecutive years is quite small.

No intervention

In addition to persons having received services, people lived in the community without any formal treatment and support (Table 10).

Changing the cut-off for the time-span from 5 years to two doubled the number of persons without contact either with psychiatric or with social services, from 15 to 31%.

Gender

It is noticeable that, except for persons sentenced to prison (all men), we found only statistically non-significant differences between men and women regarding any type of intervention. Men were significantly younger than women at date for their first time psychosis diagnosis (Table 2). There were no statistical differences between men and women in Table 5–7.

Table 5. Occurrence of institution-based services during the last 5 years of the 10-year follow-up period.

Type of intervention		Men	Women	Total	95% confidence limits for OR
Hospitalization	24/7 social institution
Yes	No	49 (24)	52 (29)	101 (26)	0.47–1.18
No	Yes	15 (7)	14 (8)	29 (8)	0.43–1.94
Yes	Yes	27 (13)	14 (8)	41 (11)	0.89–3.45
No	No	117 (56)	98 (55)	215 (56)	0.70–1.57
Total		208(100)	178 (100)	386 (101)

Table 6. Occurrence of interventions by community-based services within the last 5 years of the 10-year follow-up period.

Type of intervention		Men	Women	Total	95% confidence limits for OR
PSCB	SSCB
Yes	No	122 (59)	97 (55)	219 (57)	0.79–1.77
No	Yes	2 (1)	2 (1)	4 (1)	0.12–6.13
Yes	Yes	51 (25)	45 (25)	96 (25)	0.60–1.53
No	No	33 (16)	34 (19)	67 (17)	0.47–1.35
Total		208 (101)	178 (100)	386 (100)

Table 7. Occurrence of interventions by community-based services within the last five years of the ten-year follow-up period for men and women – among those who had no institution-based services.

Type of intervention		Men	Women	Total	95% confidence limits for OR
PSCB	SSCB
Yes	No	74 (36)	50 (28)	124 (32)	0.96–2.85
No	Yes	1 (0)	1 (1)	2 (1)	0.05–13.55
Yes	Yes	14 (7)	17 (10)	31 (8)	0.30–1.39
No	No	28 (13)	30 (17)	58 (15)	0.39–1.31
Total		117 (56)	98 (55)	215 (56)

Table 8. Number and percentage (in brackets) of persons with contact with institution-based services for the last 2 and 5 years of the 10-year follow-up.

	Men		Women		Total
Type of intervention	2 years	5 years	2 years	5 years	2 years	5 years
Institution-based services	65 (31)	91 (44)	44 (25)	80 (45)	109 (28)	171 (44)

Table 9. Number and percentage (in brackets) of persons with contact with community-based services among those with no 24/7 institution care for the last 2 and 5 years of the 10-year follow-up.

	Men		Women		Total
Type of intervention	2 years	5 years	2 years	5 years	2 years	5 years
Community-based services	83 (40)	89 (43)	74 (42)	68 (38)	157 (41)	157 (41)

More women than men had years with no contact whatsoever with social and psychiatric services, independently of the cut-off used. Regarding community-based interventions, there were no clear gender-related differences. Finally, men tended to have more years with 24/7 institutionalization than women on both cut-offs.

Discussion

Through databases, we gained knowledge about the type and time of different interventions regarding persons with a first time psychosis diagnosis.

Fifty-one persons (13%) died during the 10 years following the time they received a psychosis diagnosis for the first time. This death rate is higher than noted in other 10-year follow-up studies of persons with their first psychosis diagnosis. Hegelstads et al.’s study (2012) of early detection noted an 11% death rate in the usual detection group and of 9% in the early detection group. Variations in death rate between different studies might depend on the age range in the actual populations studied.

Trans-institutionalization to prisons had only a marginalized role. Even if the proportion of persons in the follow-up group sentenced to prison was higher than in the general population (0.47% vs. 0.13%); it should be kept in mind that the follow-up group was not representative of the general population as regards various socio-economic variables influencing criminality (Topor et al., 2011).

In the new institutional landscape, the options for a person with SMI are no longer limited to long-term hospitalization or abandonment in the community (Knowles, 2000). Rather the options consists of a life in the community with different levels and types of care – a life that may include shorter periods of hospitalization, longer periods in staffed residential arrangements, and living in one’s own home with community-based psychiatric care and social support interventions (Chow & Priebe, 2013). Still, some seem to manage to leave this landscape and to live a life in the community without any such interventions.

Institutionalization and institutional recovery

Even if we, in addition to psychiatric in-patient services, take into account the existence of 24/7 social institutions and use the 5-year cut-off, it is possible to argue that the kind of institutionalization previously offered by psychiatric hospitals has been marginalized in today’s context.

One hundred seventy-one (45%) persons were institutionalized at least once during the actual 5 years. Forty-one of them (11%) combined periods of hospitalization and of stays in 24/7 social care.

For them it could be possible to apply Slade et al.’s (2014) previously mentioned assumption about the difficulties to “live a meaningful life within the boundaries of mental health services”. Without neglecting differences in this group, it may still be possible to define their situation as ongoing experiences of institutionalization.

Thus a majority of the follow-up population, 215 persons (56%), had no stay in institutionalized services. One hundred fifty-seven of them (41%) received community-based interventions from psychiatric and/or social services. They were able to manage their problems and live a life outside institution-based services for at least the last five consecutive years of the 10-year follow-up period. In their cases, it should be possible to define their situation as recovery from institutionalization and as living in the society with formal support.

Fifty-eight persons (15%) did not have any contact either with specialized social or psychiatric services. For them it could be possible to define their situation as a life beyond the institutions and as an institutional recovery.

In the light of the discussion about personal and clinical recovery (Davidson, Tondora, & Ridgway, 2010; Roe, Rudnick, & Gill, 2007), it is possible that any of the different levels of institutional recovery could be combined with personal recovery, but only institutional recovery could be associated with clinical “total recovery”. Recovery from institutionalization could also be associated with “social recovery”.

Cutting off realities

The importance of cut-off for research findings should be perceived as obvious. However, it is rare that research teams try to problematize their own approach, showing the construction of their own results.

In the present study the percentage of persons in institutional recovery doubled when, instead of a 5-year cut-off, we applied a 2-year limit. Thus, even a recovery concept based on objective measures, as proponents for clinical recovery often argue for, is built upon subjective choices (Liberman & Kopelowicz, 2005). Being transparent and applying a reflexive approach in showing the construction work behind ones’ findings makes a critical discussion about them possible, instead of trying to proclaim results as objects existing in one’s data, ready to be discovered.

Gender

The existing knowledge about gender differences and psychosis is contradictory (Read & Beavan, 2013). Gender differences have previously been noted regarding the possibility of recovery (Nassar et al., 2002); women having a more favorable course (Read & Beavan, 2013). However, in this study we could not find any statistically significant differences between the genders, except regarding prison sentences. Nevertheless, differences could be noted showing that, compared to men, women tended to have fewer years in institution-based services and tended to have more years without any type of intervention. One reason why we could not find statistically significant gender difference might be that differences concerning outcome are usually noticed in studies with shorter follow-up periods (Torgalsbøen, 1999).

Limitations

An institutional recovery concept is not free from problems. We cannot comment on aspects of recovery formulated by the persons themselves. Living a de-instutionalized life could be an element of recovery, but it might, for some persons be a sign of social exclusion. Nevertheless it is possible to speculate that a long lasting period without institutionalization, or without any contact at all with social and psychiatric agencies in a welfare state, might both reflect and strength a person’s social connections and improved sense of self.

Another limitation is that visits to meeting places and social clubs are not registered. In addition, support provided by peers, families and friends and by users’ organizations and congregations are absent from our data, might play an important role for the persons we followed up, but cannot be considered as signs of SMI (Denhov, 2002; Topor et al., 2006).

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the Forskningsrådet om Hälsa, Arbetsliv och Välfärd.