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Consumer perspectives on the concept of recovery in schizophrenia: A systematic review

Asian Journal of Psychiatry

Highlights

 

  • Recovery was perceived as both process and outcome.
  • Concept of recovery could be categorized into process/self/family/social and illness orientation.
  • Measures of recovery should have criteria from all these domains.
  • Recovery has different stages.
  • Complete recovery is only when the symptoms are less and able to live without medicines.

Abstract

Subjective descriptions of recovery from schizophrenia may be different from clinical recovery measures. The aim of the review was to identify the consumer perspectives of recovery from schizophrenia. Twenty-five studies within the period of 2000–2013, including qualitative and quantitative studies were reviewed by using different search strategies. An integrated method was used and the findings were coded and related themes were identified under five areas, namely, process orientation, self orientation, family orientation, social orientation, and illness orientation. Recovery was considered as both process and outcome. Patient or client-based definitions of recovery mainly involved factors related to personal wellbeing and social inclusion, that were seemingly distant from the clinical recovery measures. Incorporating consumer descriptions of recovery in recovery oriented services can increase the outcome of the services.

Keywords: Recovery, Schizophrenia, Systematic literature review, Psychosis, Consumer perspectives.

1. Introduction

Receiving a diagnosis of schizophrenia can be distressing to an individual and to the family. Over the last two decades, the focus on the concept of recovery from this illness has increased. Studies showed that patients’ perception of recovery is different from the clinicians’ perception (David et al, 2004 and Andresen et al, 2010). “Professional and scientific communities have not sufficiently appreciated the subjective experiences of people with severe mental illness, and their ability to recover from the debilitating effects of illness” ( Drapalski et al., 2012 ). Clinical orientation to recovery is more focused on symptoms and functional aspects whereas patients’ orientation is more focused towards attaining goals, knowledge about mental illness, contact with others outside the family, planning relapse prevention, coping with mental illness, and involvement in self-help activities (Davidson et al, 2008 and Priscilla, 2001). Only using clinical measures of recovery may not be sufficient to assess the total recovery of a patient from schizophrenia. This is because professionals are not directly embedded in the natural environment of those they work with, thereby making it difficult to understand how an individual functions in the real world ( Narayan and Kumar, 2012 ). Recently, more emphasis was placed on recovery as a subjective orientation or attitude, suggesting that regardless of their understanding, clinicians cannot impart hope or faith in treatment ( David et al., 2004 ). Professionals’ expectation of maintaining just symptom relief or stability may lower the expectations of patients and it could be a major hindrance to full recovery.

Identifying consumers’ goals and perceptions can help them to improve self-efficacy and to empower themselves. Being able to define their own recovery can help them to evaluate treatment outcome based on the criteria set by the patients themselves.

The goals or meaning of recovery identified by patients can influence their quality of life.

This could be a motivational factor for the individual to strive towards the desired outcomes i.e. active participation leading to treatment adherence. These subjective variables are important additions to the objective measures of outcome and can help practitioners to devise more effective treatment strategies. Thereby a fast or easy recovery, as defined by patients is facilitated.

Moreover, until and unless the treating team identifies and considers consumers’ perspectives about recovery, it could be a strenuous effort to make the consumers active participants in the recovery oriented programmes. Considering all this, the authors aimed to identify the consumer perspectives of recovery from schizophrenia through this review.

2. Method

This was a systematic review carried out to identify the consumer perspectives of recovery from schizophrenia. To begin with, inclusion and exclusion criteria were prepared for the manuscripts to be reviewed. Quantitative or qualitative studies on consumer perspectives of recovery from schizophrenia between the period 2000 and 2013 were included in the study. Studies identifying or modelling predictors of clinical recovery, various clinical trials pertaining to schizophrenia, studies on recovery from schizophrenia with other co-morbidities, research with inadequate details related to the topic, e.g. population details, methodology, etc. were excluded from this review.

Electronic database searching and hand-searching strategies were used to identify relevant studies.

  • (1) Electronic database searching: Ten bibliographic databases initially searched were: MEDLINE; PsycINFO; OVID SP; Cochrane library; EBSCO host; sage journals; psychiatric online; Springer; science direct; Wiley online library. Most of the review was done with the help of Boolean/phrase search by using terms identified from the title, abstract or keywords. (mental illness OR psychosis AND recovery, recovery OR outcome AND schizophrenia, perception OR understanding AND schizophrenia recovery, subjective experience AND schizophrenia AND recovery, stages AND recovery AND schizophrenia). The identified papers were further scrutinized for additional terms, subject headings and key words, with the aim of identifying relevant papers which could not be retrieved by using the original search strategy.
  • (2) Hand search: The table of contents of few journals (Psychiatric Rehabilitation Journal, British Journal of Psychiatry and American Journal of Psychiatry) and recent literature reviews of related topics were hand-searched to ensure the inclusion of all related articles for reviewing.

The extracted data were assessed based on the eligibility criteria for all retrieved papers. This was done by carefully going through the articles for relevance of the study, methodology and presentation of results. Then the suitable manuscripts were collected and checked for quality. Papers included for review were initially assessed for quality by using a self prepared checklist for relevance, clarity, appropriateness and transparency. Those studies which were not fitting into the quality checklist were excluded. Final selection was made after a careful analysis ( Fig. 1 ).

gr1

Fig. 1 Flow chart showing the process of article selection for review.

Both qualitative and quantitative studies were included in the review. An integrated approach was used in the analysis. The data analysis framework developed in the integrated synthesis approach consisted of three stages:

  • (1) Preliminary synthesis and open coding: A preliminary synthesis was done by tabulating and translating data through open coding of good-quality primary data, and counting of emerging codes. For each included paper, the following data were extracted and tabulated: author, year of publication, methodology, techniques and tools used, location, participant information and major findings. The findings were carefully read and coded as it appeared across the tabulated data.
  • (2) Identification of main themes by compiling related codes: The themes that emerged from the codes were identified. Once the themes were created, they were compared with each other following which all related themes were categorized and finally main areas were identified.
  • (3) Summary of the findings: the concept of recovery from schizophrenia was summarized by incorporating all the related themes and areas derived from the codes.

3. Results

A total of 43 articles were retrieved. Following a critical analysis of the retrieved manuscripts, it was found that only 25 articles met the selection criteria. The remaining 18 studies, which did not meet the selection criteria and had inadequate details, were excluded from the review. Among the 25 reviewed studies, 19 were qualitative studies (n = 19), five were quantitative studies (n = 5), and one was a mixed approach study (n = 1). These papers included studies conducted in different countries, including USA, European countries, Australia, Canada, China, India, Israel and Thailand. The details of studies reviewed are listed in Table 1 .

Table 1 Details of studies included in the review.

Sl. No. Author and year Aim of the study Method Major findings (pertaining to the concept of recovery)
1 Smith (2000) To explore the concept of recovery from severe psychiatric disability Qualitative

10 recovered patients
Long, individual process of struggling, learning to live with the disability and acceptance of the illness
2 Priscilla (2001) To derive personal narratives about process of recovery from severe mental illness Qualitative

25 patients
Quest/long journey, and an ongoing process
3 Spaniol et al. (2002) To identify the themes associated with improvement in functioning and subjective experience Qualitative

12 patients
Developmental process in three phases: being overwhelmed by the disability, struggling with the disability and living with the disability
4 Forchuk et al. (2003) To explore the experience of recovery from client perspective Qual-ethnographic

10 patients
Process as improvement in cognitive functions and extended to a sense of connection with their environment
5 Tooth et al. (2003) To understand the consumer perspectives on recovery Qual-phenomenological

57 patients
Taking responsibility, having structure and organization, being like normal people, personal intention to living your life, process occurs in stages etc.
6 David et al. (2004) To compare recovery concepts between professionals and general population Quantitative survey Significant difference between psychiatrist's and general population attitude towards recovery
7 Resnick et al. (2005) To conceptualize and measure recovery orientation Quantitative

1076 patients
Significant factors identified are: life satisfaction (.88), hope and optimism (.77)
8 Andresen et al. (2006) To identify the stages of recovery based on consumer perception Qual-grounded theory

94 patients
Five staged process. Stages are: moratorium, awareness, preparation, rebuilding, growth
9 Jenkins and Song (2005) To understand the subjective experience of recovery as reported by persons living with schizophrenia Qual-ethnographic

90 patients
Process of awakening and improvement, gradual and non linear progression, incremental in nature with occasional set backs and subjective experience
10 Zanker (2008) To explore the concept of recovery and reintegration relative to mental illness in low income countries Qual-grounded theory

54 patients
Recovery is both process and outcome
11 Ng et al. (2008) To understand the meaning of recovery as told by chronic schizophrenia patients Qual-phenomenological

8 chronic schizophrenia patients
Multidimensional concept, full recovery is when the patient stops medication and has a steady job, disappearance of symptoms, independent living
12 Church et al. (2009) To discover the meaning of mental health recovery to psychiatric survivors Qual-grounded theory

10 patients
Recovery is a personal and collective journey and a site of struggle
13 Lysaker et al. (2010) To compare the personal narratives of recovery with standardized scale Qual-descriptive

103 patients
Wellness in relationship, enhanced connections, give and take relationship, self identification
14 Andresen et al. (2010) To compare the consumer defined and clinical recovery measures Quant-correlational

281 patients
Significant difference between clinical measurement and subjective experience of recovery
15 Noiseux and Ricard (2008) To arrive at a theoretical explanation of recovery based on consumer perspectives Qualitative

16 patients, 5 family members and 20 health professionals
Intrinsic, non linear progress, regain/rebuild sense of self on all biopsychosocial fields, manage imbalance between internal and external forces
16 Henderson (2011) To understand West Australians’ consumer perspectives about recovery Qual-grounded theory

15 patients
Three phase process of adjusting or overcoming three fold losses: biomedical, psychological, and/or social
17 Coldwell et al. (2011) To identify the contribution to family after recovery Qual-grounded theory

12 patients
Complex process shaped by individual, family and social factors positively contributing to family
18 Ng et al. (2011) To understand perspectives of medical students about recovery Qual-content analysis Medication stopping, resumption of normal psychosocial functioning, two staged process
19 David et al. (2011) To explore the relationship between objective clinical recovery and subjective personal recovery Quant-correlational

159 patients
No significant difference between subjective and objective recovery measures, social subscale have significant correlation with self reported recovery
20 Fardig et al. (2011) To evaluate the psychometric properties of illness management and recovery scale Quantitative

107 patients and case managers
Satisfactory internal reliability and strong test retest reliability between client and clinician version of illness management and recovery scale
21 Kaewprom (2011) To explore Thai mental health nurses perspectives of recovery Mixed approach

24 + 476 nurses
Controllable and returnable state, remission of thought deficits and normal line of behaviour.
22 Lam et al. (2011) To find out the meaning of recovery to first episode schizophrenia patients Qualitative

6 young (18–30 years) first episode patients
Regaining previous functions: cognitive and social, being normal and no medication
23 O’Doherty and Doherty (2011) To develop a coherent theory of recovery from mental illness Qual-grounded theory

32 patients
Reconnecting with self, reconnecting self with others and reconnecting self with time
24 Windell et al. (2012) To arrive at a personal definition of recovery Qual-interpretive phenomenology

30 first episode patients
Multidimensional, domains of recovery are: illness recovery, psychological and personal recovery, social and functional recovery
25 Rangaswamy (2012) To explore consumer perspectives of recovery from schizophrenia Qual-interpretive phenomenology Main indicators of recovery are: absence of symptoms and relapses, getting back to normal life, and able to handle responsibilities

Participants of these studies were recruited from a range of settings, including community mental health facilities, self-help groups, consumer-operated mental health services, supported housing facilities and belonged to different age groups. Most of the qualitative studies were on perception of patients about recovery from schizophrenia. Few studies had subjects other than patients, like medical professionals as well as the general population for comparison ( Table 1 ). According to the themes derived from the review, consumer perception of recovery could be categorized as follows:

  • process orientation
  • self orientation
  • family orientation
  • social orientation
  • illness orientation.

Participants who perceived recovery as a process described it as a continuous,non directand strenuous journey, towards an outcome which happened in an orderly process ( Table 2 ). Recovery was anon directprocess because it is a returnable state with occasional setbacks and one could see positive or negative increments in illness. This process would pass through different stages and it was gradual. Participants identified this as a struggle or battle. Recovery viewed as an outcome could be categorized into four areas namely: self orientation, family orientation, social orientation and illness orientation ( Table 2 ). Participants perceived their own self and improvement of their functioning as most important aspects in recovery. Review findings showed that recovery meant regaining the previous potentials and going back to the normal or pre-morbid stage.

Table 2 Identification of themes.

Category Themes
Process orientation Continuous

Non direct

Journey

Strenuous

Outcome oriented

Staged process
 
Self orientation Understanding and accepting self

Going back to normal self

Gaining self control

Learning to manage self

Achieving soft skills

Leading a meaningful life
 
Family orientation Having relations

Having responsibility

Productive social life
 
Social orientation Social connectedness

Social inclusion

Effective communication

Leadership roles

Economic resources
 
Illness orientation Symptom free state

Improved functioning

Back to normal

Illness understanding and acceptance

Absence of treatment

Recovery meant living with family, working for the family and contributing to the family because issues in the family relationships could be seen during the illness state ( Table 3 ).

Table 3 Stages of recovery.

Stages of trans-theoretical model Spaniol et al. (2002) Andresen et al. (2006) Noiseux and Ricard (2008) Henderson (2011)
1. Precontemplation 1. Overwhelmed by disability 1. Moratorium 1. Experiencing Illness 1. Recuperation

2. Moving forward

3. Getting back
2. Contemplation   2. Awareness 2. Igniting spark of hope
    3. Developing insight
3. Planning 2. Struggling with disability 3. Preparation 4. Activating the instinct to fight Back
    5. Discovering keys to wellbeing
4. Action 3. Living with disability 4. Rebuilding 6. Maintaining equilibrium between external and internal Environment
5. Maintenance 4. Living beyond disability 5. Growth 7. Perceiving light at the end of the tunnel

Recovery for patients was like consent to live in the society and be in the mainstream of the society. If they had attained full recovery, they would have been productive, would have social connections and acceptance within the society. Recovery meant ability to communicate effectively to others and having some important roles or responsibilities in society. Recovery meant being able to earn for themselves and their family by working in a social group efficiently.

Apart from self, family or social orientation, participants also expressed illness aspects of recovery process. They considered recovery as being free from symptoms of the illness and thereby achieving effective functioning. The functioning could be at three levels: physical, cognitive, and affective. They perceived that the ability to think normally and act appropriately with proper emotional expressions was recovery. For them, recovery was not only a symptom free state but it was an understanding of illness or learning to live even with the after effects of this illness. Some participants felt that complete recovery was possible only when he/she was off medications and the reason being, taking medicines was like a sign of illness.

Four studies from the reviewed articles described that patients experienced the process of recovery in different stages or different phases. In order to construct a general concept about the stages of recovery, the identified stages from these four studies were placed under a common model – the trans-theoretical model of behavioural change ( Prochaska and DiClemente, 1982 ). This model consists of five phases: pre-contemplation, contemplation, planning, action, and maintenance. The stages of recovery as identified in each study were sorted out as per the trans-theoretical phases. Though the stages identified by Henderson (2011) may not fit into this concept exactly, these stages were also considered. Based on this, the patients passed through different phases of recovery: illness phase, identification of the problem, preparation, treatment seeking, and getting adjusted.

To summarize, recovery was perceived as both process and outcome. This was considered as a long term process with occasional setbacks and experienced in different phases. As an outcome, recovery was an orientation to four areas such as self, family, social and illness. By recovering, the individual felt better about self, family and social functioning and was able to live with the disability or overcome the effects of symptoms. The participants felt that they could achieve complete recovery only when the symptoms were less and they were able to live without medicines.

4. Discussion

This systematic review aimed at identifying the consumer perspectives of recovery from schizophrenia. This review covered different research approaches, both quantitative and qualitative measures which supplemented each other. The strength of this review is that it covered a wide range of population from developed, developing and under developed nations and age groups ranging from adolescence to older adults.

It may be difficult to define and provide care according to individual goals and wishes for the mental health service providers as each individual's life experiences and circumstances are different. This provides a rationale to identify a united and multi-focal consumer perspective of recovery while executing recovery oriented services. This can be one of the main principles underlying in the implementation of such services.

From the literature, recovery from the consumers’ point of view is an active ongoing process in order to set a meaningful life for themselves, with or without the presence of their illness ( O’Doherty and Doherty, 2011 ). For the consumers, recovery is a complex process and is shaped or completed by individual, familial, societal and illness orientation. It is mainly based on recognition of self (strength and weakness), roles and responsibilities in the family and society and the process of illness as such.

This systematic review has substantial implication in the area of recovery oriented services. The present day service approaches or professional roles may need to be modified in order to promote a consumer oriented recovery based approach. Professionals have to be more amicable to the patients rather than be an expert or authority who provides treatment. This may require revision and incorporation of newer concepts or greater consensus on the definition and measurement of recovery. Considering this, this review presents the consumers’ orientation about their recovery from schizophrenia.

Professionals can use this as an index or guide while explaining to the patients and their caregivers about recovery from schizophrenia. Orientation about illness, recovery process, expected changes in the individual, family and societal performances, etc. can help the consumers to widen their understanding about recovery. Discontinuing or stopping medications immediately after symptom relief for short period could happen because of the misconceptions or inadequate knowledge. Explaining in the local language may help remove the misconceptions and also increase the treatment adherence. In contrast to imposing their decision, professionals should consider patients will and views which could be a facilitating factor in treatment adherence. The findings from this systematic review can be used as a guide while giving psycho education to the community. Identification of recovery phases can help initiate appropriate action.

The consumers perceive that having a community or social life is another indication of recovery from illness. This implies the importance of community oriented services and rehabilitation services, thereby social inclusion and self empowerment.

These findings can be incorporated in the measurement of recovery and in recovery oriented research activities. Studies can be conducted using a mixed approach to get in-depth knowledge and current perspectives about the concept of recovery from schizophrenia.

The idea that people can recover from mental illness has only come about in recent decades. Prior to this, the prevalent belief was that recovery for people living with mental illness was not possible (Allott et al, 2002 and Barnett and Lapsley, 2006). The reviewers were also interested in the latest study findings. So the review was restricted to the period between 2000 and 2013. Most of the studies in this review were based on the qualitative approach. Qualitative research approach is good to obtain rich subjective data, but it may be limited to few study participants. Although qualitative research findings cannot be generalized to a larger population, they do form a framework and offer hypotheses for larger sample studies. Culture and ethnic variations have to be considered while conceptualizing the main themes. Many of the studies were cross-sectional and findings were collected mainly at a single time point. It is quite possible that, concept of recovery can change over time, during the client's journey to recovery.

5. Conclusion

Patient or client or consumer based definitions of recovery may involve factors seemingly distant from the scope of mental health studies. As such, particular components of these definitions may overshadow the relative importance of medications, symptoms, treatment, and rehabilitation outcomes. Recovery in this sense creates an imperative to diminish the ideological, material, educational, and social gulf existent in the construct of “us”—as researchers and clinicians—and “them”—as individuals with mental illness ( Jenkins and Song, 2005 ). In addition, recovery is not a purely individual process. The family and society have significant role in the recovery. Incorporating consumer descriptions of recovery in recovery oriented services may increase the outcome of the services.

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Footnotes

a Govt Mental Health Centre, Thrissur, Kerala, India

b Department of Nursing, NIMHANS (INI), Hosur Road, Bangalore 560029, Karnataka, India

c Department of Psychiatry, NIMHANS (INI), Hosur Road, Bangalore 560029, Karnataka, India

lowast Corresponding author. Tel.: +91 09902763889.

1 Tel.: +91 09895444158.

2 Tel.: +91 09008873355.

3 Tel.: +91 09880905256.

4 Tel.: +91 09902763889.

5 Tel.: +91 09845615931.

6 Tel.: +91 09449068287.