Schizophrenia

HEALTH AND WELL-BEING IN SOCIAL SCIENCES

Experiences of housing support in everyday life for persons with schizophrenia and the role of the media from a societal perspective

HENRIKA JORMFELDT, Associate Professor in Nursing & MALIN HALLÉN, Senior Lecturer

in Media and Communication Studies

School of Health and Welfare, University of Halmstad, Halmstad, Sweden

Abstract Background: The mental health-care system in Sweden, as in many other counties, has its main focus on the reduction of psychiatric symptoms and the prevention of relapses. People diagnosed with schizophrenia often have significant health issues and experience reduced well-being in everyday life. The social imaginary of mental illness as an imbalance of the brain has implications concerning general attitudes in society. The news media are an important source of information on psychiatric disorders and have an important role in cultivating public perceptions and stigma. News media can contribute to the mental illness stigma and place individuals with mental illnesses at risk of not receiving adequate care and support. The aim of this preliminary study was to describe users’ experiences of housing support in everyday life. Results: The results revealed three themes of housing support, which were needed, but frequently insufficiently fulfilled in the municipality. The three themes were: ‘‘Support to Practice Healthy Routines in Daily Life,’’ ‘‘Support to Shape Meaningful Contents in Everyday Life,’’ and ‘‘Support to Meet Needs of Integrity and Respect.’’ Conclusions: The findings support previous studies arguing that current health care and housing support fails to meet basic needs and may lead to significant and unnecessary health risks. Further investigation is needed regarding the links between attitudes to mental illness in society and political and financial principles for health care and housing support for persons with schizophrenia. Further research is needed regarding the role of the media in policymaking concerning health promotion interventions for people diagnosed with schizophrenia.

Key words: Housing support, media, narratives, persons diagnosed with schizophrenia, social sciences

(Accepted: 22 March 2016; Published: 9 May 2016)

The mental health-care system in Sweden, as in

many other counties, has a strong focus on the reduc-

tion of psychiatric symptoms and prevention of

relapses (Van Wel & Landsheer, 2011) in which posi-

tive dimensions of health have not been viewed as

suitable for evidence-based practice in health care

(Jormfeldt, 2011). Barriers regarding health promo-

tion among persons with severe mental illness have

been associated with stigma, as well as professional

and organizational obstacles in the health-care ser-

vices provided (Ehrlich et al., 2014). It has been

argued that the contemporary paradigm, which focuses

on neurological explanations regarding mental ill-

ness in society, fails to take psychological and rela-

tional explanations of mental illness into account

(Rose & Abi-Rached, 2013; Williams, Katz, &

Martin, 2011). The news media are an important

source of information on psychiatric disorders and

have an important role to play in cultivating public

perceptions and stigma (Klin & Lemish, 2008).

Previous research on news media content has estab-

lished that journalistic coverage of mental illness is

largely characterized by inaccuracies, exaggerations,

and misinformation and might even contribute to

mental illness stigma through negative news content.

For example, inaccurate stories on recovery may

promote the belief that mental illness cannot be

rehabilitated effectively (Wahl, 2003). News media

can contribute to the mental illness stigma by nega-

tive portrayals of individuals with these illnesses;

therefore, making them vulnerable to social rejection

and discrimination and at risk of not receiving

adequate care and support (Klin & Lemish, 2008).

People diagnosed with schizophrenia belong to a risk

Correspondence: H. Jormfeldt, School of Health and Welfare, University of Halmstad, SE-301 18 Halmstad, Sweden. E-mail: [email protected]

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Qualitative Studies on Health and Well-being �

# 2016 H. Jormfeldt & M. Hallén. This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material for any purpose, even commercially, provided the original work is properly cited and states its license.

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Citation: Int J Qualitative Stud Health Well-being 2016, 11: 30571 - http://dx.doi.org/10.3402/qhw.v11.30571

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group for developing metabolic syndrome, cardio-

vascular disease, type 2 diabetes and reduced life

expectancy, as well as reduced well-being in every-

day life (Heald et al., 2010; Lassenius, Åkerlind,

Wiklund-Gustin, Arman, & Söderlund, 2013). The

causes of this risk are avoidable as it is related to

lifestyle in terms of inactivity, overweight, smoking,

and poor diet as well as the side effects of anti-

psychotic medication (Comptom, Daumit, & Druss,

2006). The general public, as well as policymakers,

frequently do not have sufficient knowledge of cur-

rent daily living conditions and the prerequisites for

health among people with severe mental illness.

People with mental disorders and their families are

acutely aware of the negative images of mental illness

in the news (and entertainment) media. However,

their perspectives about the prerequisites for health as

successful stories of recovery have rarely been in-

cluded as sources of news items (Stuart, 2006). The

aim of this preliminary study was to describe users’

experiences of housing support in everyday life.

Materials and methods

The sample in the present preliminary study con-

sisted of the members of the local service user

association, The Interest Alliance for Schizophrenia

and Allied Disorders. The local association embraces

approximately 50 members; involving people diag-

nosed with schizophrenia, their relatives, and others

with an interest regarding the particular diagnosis.

Forty-two letters with information about the purpose

of the study and an invitation to write down short

narratives concerning experiences of municipality sup-

port in everyday life were sent to all of the members

of the local service user association. The members

of the association were asked to recall situations

concerning municipality support in topics, such as

housekeeping, diet, physical activity, equality and

integrity, inclusion in society, participation in care

planning, health promotion and illness prevention,

and participation in meaningful activities or employ-

ment, as these topics where frequently highlighted

as problem areas during members? meetings in the local association and thus appeared to be crucial to

health promotion from their perspective. Twenty-

four letters with narratives regarding experiences of

support in everyday life from the municipality came

in return during July and August, 2011. Five of the

letters with narratives were written by individuals

with personal experiences of housing support due to

mental disability, 14 letters were written by relatives

of persons receiving community support, and five

letters were written by members with experiences

of housing support among people diagnosed with

schizophrenia from a professional perspective.

The data were analyzed using a qualitative con-

tent analysis method, inspired by Graneheim and

Lundman (2004), and carried out by the first

author. The narratives were read several times to

become acquainted with the content. Meaning units

were identified, condensed, abstracted, and labeled

with a code. The codes were compared with each

other in order to identify similarities and differences

regarding the content of the narratives in relation to

the aim of the study. The findings were evaluated

by means of discussions among both authors with

regard to each step of the analysis.

Ethics

According to the Swedish Health Care Act (2003:

460), concerning the Ethical Review of Research

Involving Humans, an ethical review was not neces-

sary as participants were recruited among members

of the local organization and no sensitive personal

information was requested. Instead, only informa-

tion without links to a specific person regarding ex-

periences of the housing support provided by the

municipality was asked for. All of the participants

gave their informed consent verbally and by writing

down and sending their narratives to the authors.

Confidentiality was assured in accordance with World

Medical Association Declaration of Helsinki (2013).

Results

The narratives collected from the members of the

local service user association revealed three themes

regarding experiences of housing support in every-

day life support which were needed, but frequently

insufficiently fulfilled through municipality provi-

sion. The three themes were as follows: ‘‘Support

to Practice Healthy Routines in Daily Life,’’ ‘‘Sup-

port to Shape Meaningful Contents in Everyday

Life’’ and ‘‘Support to Meet Needs of Integrity and

Respect.’’

Support to Practice Healthy Routines in Daily Life

Relatives’ narratives indicated a lack of support on

the subject of routines concerning housekeeping,

diet, and physical activity. Narratives showed an

absence of support among service users in getting up

in the morning and not staying in bed all day as well

as a lack of support to maintain hygiene routines,

uphold physical activity, prepare regular meals, and

purchase nutritive food.

Several descriptions affirmed lack of support regard-

ing dietary interventions despite the evidence of the

lifesaving nature of these interventions. Narratives

H. Jormfeldt & M. Hallén

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Citation: Int J Qualitative Stud Health Well-being 2016, 11: 30571 - http://dx.doi.org/10.3402/qhw.v11.30571

showed concerns because service users often eat

large portions and have an insufficient fiber intake in

combination with too much fat and sugar due to the

side effects of medical treatment.

Several descriptions revealed that obesity, which is

a well-known common issue related to antipsychotic

medication among people diagnosed with schizo-

phrenia, was seldom viewed as a serious matter

among municipality staff, even though these issues

require regular health checks by a physician. One

member of the user association*a relative of a person diagnosed with schizophrenia*stated that:

The staff from the municipal social services

do not sufficiently recognize the needs of the

service users who, as a result, receive too little

encouragement to engage in activities and

recover.

Support to Shape Meaningful Contents in

Everyday Life

Narratives from both the relatives and from a pro-

fessional perspective revealed that service users seldom

received sufficient support in their daily tasks, which

was perceived as a drawback in their efforts to

become involved in the society. The housing support

provided by the municipality in the service users’

accommodations was described as ‘‘storage’’ instead

of care by the service users’ relatives. The realities

described by the narratives showed that the service

users often became too dependent upon their rela-

tives to be able to participate in society?s basic activities, because support, company, and reassur-

ance from staff were absent. Another issue frequently

reported was the nonexistence of support or solu-

tions to service users’ difficulties to use public

transport. One relative expressed the following:

The service user does not have the same

opportunities to develop their capabilities . . . they don’t get recognized and encouraged

enough to carry out things properly. They

simply don’t get help . . ..

Support to Meet Needs of Integrity and Respect

Some narratives spoke of the experiences of under-

standing and respectful behavior among staff, even

though an ‘‘us and them’’ perspective was evident in

most staff�user relationships, as well as experiences of inequalities regarding power and decision-making.

Narratives of relatives expressed their experiences of

violations of both service users’ and their relatives’

dignity when staff were intruding their individual

integrity by claiming transparency regarding the ser-

vice user’s health status and personal relationships.

Narratives frequently described insufficient knowl-

edge among staff concerning the special difficulties

related to the diagnosis such as lack of motivation

and side effects of medical treatment. Moreover,

they easily accepted service users’ wishes to draw

back and isolate themselves without considering

the hostile effects of isolation, and the fact that the

diagnosis of schizophrenia often involves a tendency

to immure oneself. One service user described his

experiences as this:

The first years when I became ill I was just

assigned to an apartment and left all by myself

with prescribed medication. It took me several

years of misery before staff paid any attention

to my situation and gave me a hand to get

me back on track. Now I have got sufficient

support from staff but I should have got it from

the beginning.

Discussion

The lack of support regarding positive dimensions

of health among people with severe mental illness

has been revealed previously (Ehrlich et al., 2014;

Jormfeldt, 2011) and, according to the findings of

this preliminary study, this topic still needs attention.

The results of this preliminary study show that

current available housing support for people diag-

nosed with schizophrenia fails to meet basic needs

and may lead to significant and unnecessary health

risks and reduced well-being in line with previous

studies conducted by Comptom et al. (2006), Heald

et al. (2010), and Lassenius et al. (2013). There is a

reason to believe that stigma and barriers regarding

health promotion among people with severe mental

illness (Ehrlich et al., 2014) are related to the

negative media portrayals of mental illness (Wahl,

2003). Furthermore, the current focus on the reduc-

tion of psychiatric symptoms and prevention of

relapses in mental health care could be transformed

by media information concerning the fact that

mental illness can be rehabilitated effectively (Van

Wel & Landsheer, 2011). Further studies are needed

regarding the public discourse of mental illness in

public debate and within the scientific community to

increase awareness of how the current discourse

shapes the existing delivery of education, research,

and clinical praxis in mental health services. An

important topic in future research should be the role

of media portrayals of mental illness as it directly

affects people with mental illnesses by impeding

their social participation and interferes with their

recovery (Klin & Lemish, 2008). In addition, further

research is required regarding the perspective of

Experiences of housing support in everyday life

Citation: Int J Qualitative Stud Health Well-being 2016, 11: 30571 - http://dx.doi.org/10.3402/qhw.v11.30571 3 (page number not for citation purpose)

professionals in mental health services and journal-

ists focusing on mental health and illness.

Acknowledgments

We thank the members of the local user association

of The World Fellowship for Schizophrenia and

Allied Disorders, who generously shared their ex-

periences of housing support with us.

Conflict of interest and funding

The authors have not received any funding or

benefits from industry or elsewhere to conduct this

study.

References

Comptom, M., Daumit, G. L., & Druss, B. G. (2006). Cigarette

smoking and overweight/obesity among individuals with

serious mental illness. A preventive perspective. Harvard

Review of Psychiatry, 14, 212�222. Ehrlich, C., Kendall, E., Frey, N., Kisely, S., Crowe, E.,

& Crompton, D. (2014). Improving the physical health

of people with severe mental illness: Boundaries of care

provision. International Journal of Mental Nursing, 23,

243�251. Graneheim, U. H., & Lundman, B. (2004). Qualitative content

analysis in nursing research: Concepts, procedures and

measures to achieve trustworthiness. Nurse Education Today,

24, 105�112. Heald, A., Montejo, A. L., Millar, H., De Hert, M., McCrae, J.,

& Correll, C. U. (2010). Management of physical health

in patients with schizophrenia: Practical recommendations.

European Psychiatry, 25, 41�45.

Jormfeldt, H. (2011). Supporting positive dimensions of health,

challenges in mental health care. International Journal of

Qualitative Studies on Health and Well-being, 6, 7126. doi:

http://dx.doi.org/10.3402/qhw.v6i2.7126

Klin, A., & Lemish, D. (2008). Mental disorders stigma in

the media: Review of studies on production, content, and

influences. Journal of Health Communication, 13(5), 434� 449. doi: http://dx.doi.org/10.1080/10810730802198813

Lassenius, O., Åkerlind, I., Wiklund-Gustin, L., Arman, M., &

Söderlund, A. (2013). Self-reported health and physical

activity among community mental healthcare users. Journal

of Psychiatric and Mental Health Nursing, 20, 82�90. Rose, N., & Joelle, Abi-Rached, M. (2013). The New Brain

Sciences and the management of the mind. Princeton, NJ:

Princeton University Press.

Stuart, H. (2006). Media portrayal of mental illness and its

treatments: What effect does it have on people with mental

illness? CNS Drugs, 20, 99�106. Swedish Health Care Act. (2003). The act concerning the ethical

review of research involving humans. Vetting the ethics of

research involving humans. Retrieved November 24, 2015,

from http://www.epn.se

Van Wel, T. F., & Landsheer, J. A. (2011). Societal participation:

Examining the impact of a rehabilitation approach for young

people with schizophrenia. Journal of Psychiatric and Mental

Health Nursing, 19(9), 792�798. Wahl, Otto, F. (2003). ‘News media portrayal of mental illness:

Implications for Public Policy.’ American Behavioral Scientist,

46(12), 1594�1600. doi: http://dx.doi.org/10.1177/0002764 203254615

Williams, S. J., Katz, S., & Martin, P. (2011). Neuroscience and

medicalisation: Sociological reflections on memory, medi-

cines and the brain. Sociological reflections on the neuros-

ciences. Advances in Medical Sociology, 13, 231�254. World Medical Association Declaration of Helsinki. (2013).

Ethical principles for medical research involving human subjects.

Retrieved November 24, 2015, from http://www.wma.net

H. Jormfeldt & M. Hallén

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