An Interview with Jean Pierre Wilken
The CARe Network changed its name from CARe Europe in March 2018, emphasizing the global perspective and horizontal organization structure of the initiative.read more
Anthony (1993) traces the origin of the recovery construct in the United States back to the 1970s. During that time period, a new self-help ideology was becoming increasingly popular. A number of factors have influenced this self-help movement, like the human rights movement, and the wish to reduce stigma. Anthony challenged the rehabilitation movement and the mental health system to really address people’s multiple residential, social, vocational and educational needs and wants. He defined recovery as:
a deeply personal, unique process of changing one’s attitudes, values, feelings, and goals, skills and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with the limitations caused by illness. Recovery involves the development of new meaning and purpose in one’s life (p. 15).
Patricia Deegan (1996) wrote a moving account of her own recovery process:
“It is very important for me to say that, yes, I have a disability, but that does not make me a disabled person. I have learned that it is possible to lead a worthy and healthy life despite my disability. People often think that the two don’t go together, but they’re wrong. I have a psychiatric disability and lead a full and healthy life. I succeed in this because I am working on my recovery. I believe that I will recover.(...) One of the lessons that I had to learn was that recovery isn’t the same as being cured. After having lived with my illness for 21 years, it hasn’t gone away. I don’t suppose that I will ever be cured, but I am recovering. Recovery is a process, not an end or goal. Recovery is an attitude, a way of getting through the day and tackling the challenges that come my way. (...) Knowing what I can’t do lets me see the numerous possibilities still open to me”.
Deegan also writes that recovery is something that people with disabilities have to do themselves, while rehabilitation is something that care workers can do to support the recovery process (Deegan, 1988).
Other clients define recovery as:
“Recovery is an on-going process of growth, discovery, and change” (Stocks, 1995).
“A recovery paradigm is each person’s unique experience of their road to recovery .... My recovery paradigm included my reconnection which included the following four key ingredients: connection, safety, hope, and acknowledgment of my spiritual self” (Long, 1994, p. 4).
The Principles of Recovery
Cited from Shepherd, Boardman & Slade (2009) / Adapted from Recovery – Concepts and Application by Laurie Davidson, the Devon Recovery Group.
The course of a recovery process
A number of authors have conducted studies and developed ideas about the course of a recovery process (Strauss et al., 1987; Young & Ensing, 1999; Spaniol et al. 2002). Although it is clear that every recovery process is unique, these studies provide insight in the paths a recovery process can follow and the phenomena which occur. All models describe a developmental process from the onset of the illness, often accompanied by a state of serious crisis and disintegration of the self, leading to a state in which the person either knows to cope with the illness and its consequences, or to a total recovery. During this process, two parallel processes evolve: a process in which the person has to come to terms with him/herself, and a process of reconnecting to the world.
Reconnection is a word which describes well the focus of both processes. The person has to re-connect to himself, finding his core identity, taking control over his disability and his own life. He has also to re-connect to the world around: his social network, the school, the neighbourhood, the job.
A global model of the course of a recovery process was described by Forbess (1993), who assumes that people with a severe psychiatric disability basically go through the same recovery process as people with other serious disabilities. This process can be roughly divided into three phases: stabilization, reassessment and re-integration. This three phase model is adapted by Wilken & Den Hollander (1999) as the basis for their comprehensive rehabilitation model. The latter authors have replaced the word reassessment by the broader term ‘reorientation’.
|Stabilization||Re orientation||Re integration|
controlling symptoms en diminishing the suffering
exploring the implications of the illness for the near future; exploring how to get back to a normal life
restoring meaningful activities, relationships and social roles
In a study by Spaniol and colleagues (Spaniol et al. 2002), a model with four phases was conceptualized:
|Overwhelmed by the disability ||Struggling with the disability ||Living with the disability ||Living beyond the disability |
|The person tries to understand what is happening and to control the illness.||The person develops an explanation for what is happening and recognizes a need to develop ways of coping with the disability.||There is stability. The person feels confident about managing the disability and having some control over his life. He/she has discovered that a satisfying life is possible despite having a disability. The person knows to utilize effective coping strategies to deal with the impairments and assumes a number of meaningful roles.||The impairments and disabilities do not significantly interfere with having a satisfying life. The person feels well connected to self, to others, to various living, learning, and working environments, and experiences a sense of meaning and purpose in life.|
Themes in the recovery process
Ridgway (2001) analysed four first person recovery narratives (Lovejoy, 1984; Deegan, 1988; Leete, 1989; Unzicker, 1989) to find the following common themes:
A cluster analysis of 26 narrative studies (Wilken, 2010), reveals four clusters of personal factors and one cluster of external or environmental factors. These clusters can be conceived as dimensions of a recovery process.
The clusters or dimensions are:
1. Factors which provide personal motivation to initiate recovery and to move forward;
2. Factors belonging to the development of competency for coping with the illness and the environment;
3. Factors contributing to the reconstruction of the identity;
4. Factors of social engagement;
5. Environmental factors which serve as resources for recovery.
1. Drives for recovery
For engaging and persisting in a recovery process, a number of motivational factors are coming forward from the analysis. The will to change or make progress is indispensable. Motivational factors are the empowering forces for recovery. A first factor is of a negative kind. Often at rock bottom a decision is made that life should not be continued, because the suffering has become unbearable and/or someone does not see any future perspective. What is not wanted anymore is turned into a strong appeal for help or a drastic change of strategy, often marked by turning a passive into an active mode. Negativity is turned into a force which intends to make a change.
Another motivational factor is having the desire and commitment to contain the illness and its consequences. The person wants to cope better with the stress factors connected to the personal vulnerability, in order to prevent relapse. Another factor is: wanting to create meaning and to make positive life changes. This factor is often associated with (re)developing identity (cluster 2) and the desire for social participation (cluster 4).
In many studies hope comes forward as a strong motivational factor. This hope can come from many different internal and external sources, for example spirituality and faith, or good examples of others with similar experiences. It is important believing that recovery is possible and having this belief supported by others (see dimension 5). Spirituality and faith are, besides hope providing, also providing support to hold on and to pursuit despite difficult circumstances.
Finally a sub cluster of motivational factors has to do with the desire to become less dependent on others. This is the desire to become more self-reliant, to increase self-determination and self-advocacy.
2. Developing competences
Competences are a combination of an attitude, knowledge and skills, which enable a person to function in certain areas of life and enable him to a desired degree of independence and autonomy.  In the process of recovery not only the acknowledgement of existing strengths is important but also the development of (new) strengths.
An important area is learning to cope with the illness and its consequences. This learning process is fuelled by the desire and commitment to contain the psychosis and its damage. The purpose is developing a conscious and active stand towards the disease
This includes learning skills for coping with stress factors for which someone is sensitive. These stress factors might be intrapsychic by nature, social or physical. People are eager to collect knowledge about the disease or disability. They get information from professionals, by reading books, by searching the internet and by asking peers. For a number of persons it is needed to learn how to control thoughts, words and actions Skills are acquired through self-experimentation, psycho-education, cognitive therapy, learning to use an early warning signs plan and using counselling.
Taking care of the disability is closely related to self-care skills, although this is a broader area. Many people indicate that good self care is essential. They mention: having a good sleep, maintaining a balance between rest and activity, eating well, and keeping the house tidy. A specific self-care skill is medication management. For most people medication is important to control the disease. Medication management includes knowing which medication to take, including dosage and time, being disciplined to take the medication, self-monitoring skills when a condition is changing and medication should be adjusted, and having regular medical checks.
For people struggling with substance abuse an important area of competence is learning how to control the substance use.
Another area of competence is to manage strengths and vulnerability when (re)entering social life, like education or work, in order to maintain stability. The illness can lead to activity and participation restrictions, and the challenge is to reduce these restrictions as much as possible. One important restriction coming forward from the studies is stigmatisation. The person has to learn to cope, both with self-stigmatisation (connected to dimension 2) as with stigmatisation by the environment. As far as the latter is concerned, this includes competences like knowing when and what to tell about yourself, and correcting wrong images. Dealing with wrong perceptions of other people requires social skills. Knowing when and how to express vulnerability and psychiatric past is part of this.
Social skills are also needed more generally for developing and maintaining social relationships. In a number of studies it is indicated that social skills are impaired either by the disease itself, or by the hospitalisation. Social skills which have been acquired in the past are mostly intact but it needs sufficient self-confidence to start reusing them. In other cases new social skills have to be learned.
Another domain of competency is what I call self-determination skills. These are the skills which are needed to stand up for yourself, to give your opinion, to make decisions and to take responsibility for your life and behaviour. These are competences needed for autonomy and independence. Developing these skills often requires being able to express your self. It requires self-confidence and communicational skills.
Finally a specific area of competence is formed by the competences which are needed to put life and identity into (a new) perspective. This is an area which is related to cluster 3. It requires some cognitive ability to put things in a time perspective and to acquire insight. It also requires communicational skills in order to tell or write about the personal story.
3. Developing identity
A third dimension contains factors which are related to the development of the personal identity. We learn from the studies that illness and events have caused a distortion in the conception of the self. A person has to (re)discover who s/he really is. Depending on age and the situation before the onset of the illness, the identity has to a more or lesser extent to be constructed or reconstructed. Young & Ensing (1999) are speaking about ‘rebuilding a sense of self’.
Five elements come forward. The first is that a person is learning to segregate psychiatric symptoms and external factors from the personality. Psychiatric symptomatology like psychotic delusions can severely disturb the self-image. A person is figuring out that being psychotic is different from being a psychotic. The person is not the same as the disease.
Examples of external factors are: stigmatisation by a psychiatric diagnosis or the effects of long term hospitalisation, by which the identity has been reduced to ‘being a patient’.
A second element is that the person is assigning meaning to past experiences. To many persons the past was a knout of events in which the self, the disease, and occurring events were confusingly interwoven. The person wants to sort out for instance the order of events, and the causality between circumstances, a particular event, a disease and a disability. By getting more understanding about what has happened, the role of the self becomes clearer.
This process of life reviewing is often connected to mourning and trying to accept what has happened. Part of this is that also a vulnerability or disability has to be accepted. It seems that the acceptance of a disability is easier when it could be placed in a past perspective which can be more or less understood.
A third element of developing identity is the discovery of personal strengths. These strengths are for example: the strengths to overcome crisis situations, social skills, a personal virtue, or the talent to write stories or poems.
A fourth element is incorporating the illness/disability in the core identity. This usually requires that a person has a clear picture of the vulnerability, and does accept what apparently can not be changed. It is also the acknowledgement that the vulnerability is just a part of the self, and that other -strong- parts are also there. By re-establishing a positive identity, also the sense of agency and autonomy is strengthened.
A fifth element is increasing self-confidence. Self-confidence is boosted by developing more competences (dimension 3) and engaging in activities where personal competences can be used and valued (dimension 4).
4. Social engagement and integration
This dimension contains a number of aspects which are associated with social relations and community (re)integration. In the process of recovery at a certain point in time persons are taking steps to change their social status. This active change is marked by engagement. A person is (re)connecting himself. Three forms of engagement come forward from the studies: engaging in meaningful activities, engaging in social roles and engaging in positive relationships.
Engaging in meaningful activities means that a person is taking up activities which are meaningful to him or her. This does not necessarily mean that these activities have a meaning for others. It may well concern ‘in-house’ activities, like doing the household, reading literature or practising a hobby like painting. Meaningful activities are also connected to social roles. People are taking up the role of a classmate (education), a colleague (work), a neighbour or a family member.
A third kind of social engagement which is emphasised is the engagement in positive relationships. People are consciously choosing to enter in relationships which are offering them pleasant and meaningful interactions. Topor (2001) mentions a number of functions others can fulfil. Others can:
* Serve as vicarious bearers of hope
* Provide material support
* Be recipients of meaningful behaviour
* Symbolise continuity and wholeness in the person’s life
* Provide a relationship which can be used to test the viability of the recovery
Having a paid job is considered in many studies to be desirable, because it provides not only opportunities for socialising and developing new relationships but also a meaningful social identity (cluster 2), and opportunities to use and develop skills (cluster 3). Additionally it provides financial independence which contributes to autonomy (see also Curtis, 2000).
While engaging in social relationships it is important not losing balance (Boevink et al., 2002). Relationships also may cause stress. Here the disability management competences from cluster 3 are important to maintain stability. At the same time entering in personal relationships provides the opportunity to experiment with coping strategies.
Activities appear to be important not only because they help to structure and fill the person’s time, but also because they provide opportunities for the person to explore and express aspects of his or herself, give meaning and purpose to the person’s life, offer enjoyment and pleasure, contribute to a positive and effective sense of self-worth and belonging, and, finally, help to counteract symptoms (Davidson et al. 2005).
Specific environments in the community which are supportive for recovery seem to ‘foster an interplay between being with others who are supportive and/or receptive to support, and doing things that feel meaningful, ultimately kindling -and over time building- a favourable redefinition of self’ (Sells et al, 2006: p. 15).
These factors contribute to interconnectedness with others. By (re)connecting to the community and becoming part of it, self-confidence and self-development are stimulated. Persons are shifting their status from a ‘disabled’ to an ‘able’ person, a person who is not only at the receiving end but also at the giving end. Self-confidence is achieved by socialising with other people and fulfilling a role in which they can make a contribution to a good cause (Tandy, 2003).
5. Environmental support / resources
A fifth cluster of elements contributing to recovery are environmental resources which offer support. These elements can be divided in personal and material resources. Resources should be supportive and provide opportunities.
All the studies mention the importance of others who are offering support with regard to different aspects of the recovery process. Recovery needs support and partnership. It is not accomplished alone. Supportive relationships are described in terms of: people believing in me, people giving hope, or people having positive expectations. Support can also take a practical form, like help with finances, the household or finding a job.
Many different supportive others are mentioned, like family members, friends, members of religious/spiritual and cultural communities, fellow-patients/clients/consumers/residents, and professionals. It is clear that having others believing in you kindles optimism and hope. ‘People believed in me’, ‘people had faith in me’, ‘people gave me hope’, said respondents.
It was very positive to be around people who were so supportive of me and so concerned for my wellbeing and it gave me a lot more joy and a lot more spark for the future. (Tasimauri, citation in Lapsley et al., 2002, p. 71)
It is important having friends and family who are supportive, but do not undermine the person’s self-determination. A number of studies mention pets as valuable supports.
In a number of studies the importance of peer support is mentioned. Involvement in the consumer movement, peer support initiatives, recovery groups or advocacy groups serves multiple purposes. They provide affirmation of experiences and motivation (dimension 1), it contributes to developing the identity (dimension 2) and competences (dimension 3) and it is a form of meaningful social engagement (dimension 4). Furthermore those peer groups help overcoming stigma and finding acceptance and a sense of belonging.
My peers and friends in support groups did understand, and they never tried to ‘treat’ me. Instead, they gave me love, understanding, kindness, and support. I built upon my experiences in the support groups and started to heal. (Pat, citation in Cohen, 2005, p. 349).
Material resources needed for disease/disability management are medication and a safe and supportive place to be available in case of relapse.
Material resources needed for social participation include having means of income, safe and decent housing, education, healthcare, transportation, and means of communication (e.g. a telephone). An own place to live comes forward as an important factor for recovery
I spend a lot of time on my own because I have an enormous need to unwind and chill out. To recharge my batteries . . . when I’m around people I get so worked up that I need time to calm down, so that when I spend time with people I like to retire early because I need several hours of peace and quiet on my own before I can go to bed. (Carol, in Davidson et al. 2005: p. 188)
Some European studies mention the social insurance system as a resource to maintain a basic living standard as long as the disability does not permit acquiring enough financial means through a paid job.
It was important that I got social benefits. It turned out that I was eligible for some pension points because I got ill before I was 24 years and there is a law ... I was receiving minimum pension. And that was a tremendous relief. Because when I lived at home and stopped smoking I managed to get by on minimum pension. But the thought of moving into my own place with only a minimum pension was tough. So the fact that I got some pension points and more money was a good step in the right direction. That was a burden lifted from my shoulders because then I knew that I could manage living on my own later and not having to worry about my financial situation. (Kari, in: Mezzina et al. 2006: p. 53)
Mental health care resources
Mental health care resources can also be divided in personal and material resources. Finding the ‘right services’ and the ‘right helpers’ (Smith, 2000) is very important. The presence and support of professionals is important, professionals who genuinely care, have positive expectations, a positive and encouraging way of working, and allow enough room for persons to follow their own way.
‘And they tell me: ‘‘Don’t give up, keep trying, you look nice and you’re outgoing and you’re creative and you’ll surely find some job somewhere.’’ And, like, when I got a job at a large department store, just as an extra, they said: ‘‘Congratulations!’’ and hugged me and congratulated me, saying: ‘‘How well things are going for you’.’ (Annica, Davidson et al. 2005: p. 191)
A number of studies list qualities of professionals which are considered valuable. On a relational level these include: an attitude of equality, unconditional acceptance, understanding and empathy, confidence, being available, openness, ability to listen, genuinely caring, providing confirmation, a sense of belonging. Professionals should not be primarily interested in symptoms and problems but in the person as a whole. Furthermore, aspects are mentioned like having patience, giving emotional support, being trustful and respectful and instilling hope for recovery. A positive and encouraging way of working is appreciated, a way of working which is providing enough room for expression, self-direction and self-development.
‘It was just accepted as fact that that’s how it was for you, they weren’t trying to put words in your mouth ... you were listened to ... we were treated as people, not just self-harmers.’ (Pippa, in Barnett & Lapsley, 2006, p. 60). For Pippa, being actively involved in treatment and having a sense of control was important, as this had never occurred before during her long history of contact with mental health services. She noted that although the programme might implement a safety contract if anyone was at risk, ‘you’re the one who comes up with what’s in it ... you’re the one who decides what action to take ... and they’ll just support you with it ... they’ll suggest things, not force things on you’.
Being listened to, and keeping the direction and responsibility in the hands of the person seem important elements of recovery oriented care. Safety is important: services should ‘offer a place that is about getting people on a safe road to recovery’ (Barnett & Lapsley, 2006, p. 62). Persons like mental health staff to inquire about and take into account their living circumstances, their histories and their aspirations, and to be concerned about their overall wellbeing. They want to be encouraged to maintain and expand their normal lives and social networks, and have useful support for career and education aspirations, as well as sensitivity to housing arrangements. They like to be seen as individuals, with their own values and cultures. Continuity is also important, so that people can develop relationships with staff and not have to tell their story over and over again to strangers.
Professionals are appreciated who are validating people’s experiences, respecting them and treating them as intelligent persons who have something to contribute. Professionals who believe in the person, who have a focus on their strengths, and believe in their potential to contribute and achieve.
On a practical level, professionals are valued which were recognising needs for assistance, making (extra) efforts on behalf of the person, giving adequate and effective advice, and providing good quality services like psychotherapy.
Topor et al (2006) mention a number of ways professionals can play an important role in the recovery process: (1) by conveying information to the person because of their formal position as a professional and by virtue of this expert status; (2) by serving as an intermediary for various interventions that involved money, activities, groups, housing, and occasions for socialising, etc.; (3) by doing more than their formal role required; and (3) by doing something different than what the person had come to expect.
After I had worked there for a month she came and gave me a rose. It’s dried up now and I have it at home. Small things like that. (Vera, in: Topor et al, 2006: p. 31)
As far as material mental health care resources are concerned, services should be responsive. This means that services should adequately and flexibly respond to the needs of the person. In case hospitalisation is needed, this should be in a safe, friendly and least restrictive environment. Services have to contribute to increasing strengths and competence in coping with vulnerability and life stress, to contribute to explanations of what has happened or how the disability is constructed, to explore issues of identity and to explore new possibilities for increasing autonomy.
In the stabilisation and reorientation phase, individual psychotherapy is generally mentioned as the most appreciated form of professional assistance, although studies about young people indicate that for them group psychotherapy and other group activities in which sharing with peers is important are regarded as valuable. In a number of studies specific forms of therapy are mentioned, like cognitive behavioural therapy, psycho education, and training programmes focused at illness management.
In most studies medication is mentioned as an indispensable resource. Often a struggle is mentioned to find the right type and dosage of medication. Here, a close collaboration with a psychiatrist is mentioned as being important. Persons appreciate a psychiatrist who is, working on an equal level, taking the opinion and experiences of the person seriously, and carefully looking for a medication which gives the best results with a minimum of undesired side effects.
This text is taken from: Wilken J.P. and D. den Hollander (2005). Rehabilitation and Recovery. Amsterdam: SWP Publishers, p. 35 – 74, and Wilken J.P. (2010). Recovering Care. Amsterdam: SWP Publishers, p. 53-61.
last edited by Jean Pierre Wilken March 2013