Quantitative Critical Review/Review Quantitative data for Occupational Health Therapy case study..

13British Journal of Occupational Therapy January 2010 73(1)

R
esearch

Introduction
The World Health Organisation and International Early Psychosis
Association have defined the outcomes expected from early intervention
in psychosis services (Bertolote and McGorry 2005). These outcomes
include the expectation that within 2 years of diagnosis, at least 90%
of service recipients will be participating in social roles and activities
similar to their peers. This ambitious declaration assertively places the
responsibility for the prevention of disability in early intervention in
psychosis with those who deliver services.

Occupational therapists can contribute to these outcomes by developing
evidence-informed practices to enable the occupational success and satis-
faction of people experiencing first episodes of psychosis. These practices
will need to be sensitive to the daily life experiences of people affected
by psychosis and include the perspectives of their families, friends and
communities. In order to contribute to this knowledge base, the present
study examines patterns of activity performance and social participation
in the period following the first formally diagnosed episode of psychosis.

Early interventions in psychosis programmes have been developed
to reduce the recurrence of psychosis, control symptoms, promote
adjustment to daily life and prevent long-term disability. To date, these
programmes have focused primarily on the early recognition and phar-
macological treatment of psychosis, family education and cognitive-
psychological interventions. Until recently, literature and research focused
on occupational and social interventions specific to this population have

Activity and social participation in the period
following a first episode of psychosis and
implications for occupational therapy
Terry Krupa,1 Harriet Woodside 2 and Karen Pocock 3

Key words:
Early intervention for
psychosis, occupational
therapy, activity and
social participation.

Purpose: The study advances a conceptual understanding of activity and social
participation in the period following the first episode of psychosis.

Method: A constructivist, grounded theory approach was used. Data were
collected from 25 primary participants who had experienced a first episode of
psychosis in the previous 5 years; 15 secondary participants, such as family
and friends, with knowledge of the activity and social experiences of primary
participants, personal records and documents; and six key informants.

Findings: The first episode of psychosis was highly disruptive and even
damaging to activity and social participation. Recovering from this fall-out, to
maintain engagement in activities and social participation, included the need to
create new plans, adjust to affective disconnection, develop balanced lifestyles,
match participation to abilities, learn new skills, and participate under new and
constraining social conditions.

Conclusion: The period following the first episode of psychosis is a time of
high risk for disengagement from activity and social participation. Occupational
therapists have an important role to play in enabling activity and social
engagement. The findings offer examples of how occupational therapy services
might address critical tasks for activity and social engagement.

© The College of Occupational Therapists Ltd.
Submitted: 13 April 2009.
Accepted: 12 August 2009.

1Queen’s University, Kingston, Ontario,
Canada.

2 The Cleghorn (Early Intervention in Psychosis)
Programme, St Joseph’s Hospital, Hamilton,
Ontario, Canada.

3Central Northern Adelaide Health Service –
Mental Health Directorate, Adelaide,
South Australia.

Corresponding author: Dr Terry Krupa,
School of Rehabilitation Therapy,
Queen’s University, 31 George Street,
Louise D Acton Building, Kingston,
Ontario, Canada K7L 3N6.
Email: [email protected]

Reference: Krupa T, Woodside H, Pocock K
(2010) Activity and social participation in
the period following a first episode of
psychosis and implications for occupational
therapy. British Journal of Occupational
Therapy, 73(1), 13-20.

DOI: 10.4276/030802210X12629548272628

14 British Journal of Occupational Therapy January 2010 73(1)

Activity and social participation in the period following a first episode of psychosis and implications for occupational therapy

been relatively sparse (McGorry and Yung 2003, Killackey
et al 2006).

Programmes designed to have an impact on broader
activity and social outcomes will require attention to the
particular issues and needs of this group. Psychosis
typically emerges in adolescence or young adulthood
and services will need to address developmental tasks,
including establishing peer relationships, intimacy and
sexuality, establishing career foundations and developing
autonomous living and financial self-sufficiency. In
addition, substance use, experiences of abuse, trauma
and suicidality may be present (Jonikas et al 2003).

The period immediately following a first episode of
psychosis is a high risk time for the disruption of and
disengagement from important activities and social inter-
actions. Studies have reported that 50% of the people
seen by early intervention clinics will not return to their
previous productivity roles after the first year of service,
and that 10-20% will experience refractory symptoms of
their illness that will need to be addressed to enable
recovery of meaningful participation (Fraser et al 2006).
Evidence suggests that approximately 40% of people
served by early intervention psychosis clinics will make
application for government disability pensions within the
first 2 years of receiving services (Nandlal et al 2008).
In addition, there is evidence to suggest that individuals
will make adjustments to career and personal plans
even before the first episode of psychosis, in response to
functional problems (Woodside et al 2007).

Much of the scholarly literature related to occupational
therapy with this population has been descriptive in
nature. Reports include inpatient and community-based
services that are designed to meet the unique needs of
people experiencing first episodes of psychosis in order
to promote successful participation in a broad range of
occupations (Albiston et al 1998, Parlato et al 1999,
Lloyd et al 2000, Fisher and Savin-Baden 2001, Lloyd and
King 2007, Zafran et al 2008). These works have made
contributions to defining elements of occupation-oriented
services specifically designed for the early phase of recovery.

Relatively few research studies about first episodes of
psychosis have accessed the voices and subjective life
experiences of affected individuals and their families,
friends and communities. Qualitative research method-
ologies can develop an understanding of how a range of
personal, social, cultural and political factors influences
the illness experience. In the areas of occupational therapy
and psychiatric rehabilitation, qualitative research studies
that focus directly on activities and social participation
can provide important information to inform programme
design and outcomes research.

Method
A constructivist, grounded theory approach (Charmaz 2000)
was used to advance a conceptual understanding of activity

performance and social participation following the first
episode of psychosis.

Recruitment and ethics
Twenty-five primary participants from three first-episode
clinics in southern Ontario, Canada, and one adult commu-
nity treatment team located in South Australia were recruited
through their case managers by means of a study infor-
mation sheet. Study participants were clinically diagnosed
with a first episode of psychosis within the previous 5 years
and were living in the community. Theoretical sampling
ensured variation in age, gender, cultural background,
work and education, marital status, hospitalisation history
and substance use. The primary participants identified
individuals within their social network (secondary par-
ticipants) and personal documents that could contribute
relevant information. Finally, six experts were recruited to
offer their perspective on the research questions.

The study received approval from the research ethics
boards of each participating site and informed consent was
obtained from all study participants.

Data collection and analysis
The primary methods of data collection were interviews and
document analysis. Interviews with primary participants
were recorded and transcribed and hand-recorded notes
of interviews with secondary participants kept. The data
collection was guided by a semi-structured interview organ-
ised around the core questions:
1. What are the evolving patterns of activity performance

and social participation?
2. How are activity performance and social participation

patterns represented in the various domains of daily life?
3. How did the individual’s self-identity evolve?
4. How was psychosis experienced by the individual within

the various daily life domains?
5. What was the perception of and attitude towards psychosis?
While the full study focused on the time before, during and
after the first episode, this paper addresses only the period
following the initial formally recognised episode of psychosis.
Findings focusing on the period before the first episode
of psychosis have been reported in other publications
(Woodside et al 2007, 2008).

Following methods proposed by Strauss (1986) and
Charmaz (2000), the analysis began with the interviews
with primary participants using open coding and con-
stant comparative methods to develop an evolving cod-
ing structure. The data for each of the codes were then
analysed to develop categories, the relationships between
categories and their relationship to the central phenom-
enon of activity performance and social participation.
This process was repeated for interviews with secondary
participants, data from documents and, finally, interviews
with key informants. The final analysis used the constant
comparative method to develop core categories that are
presented in these findings. Direct quotations from the
data are indented in the study findings.

15British Journal of Occupational Therapy January 2010 73(1)

Terry Krupa, Harriet Woodside and Karen Pocock

Study participants
Table 1 provides social and demographic information about
the 25 primary participants. Approximately one-third
were female. The mean age of the participants at the time
of the first episode was 25.7 (range = 18 -39). At the time
of their first acute episode, 19 participants were between
18 and 29 years of age and 6 were between 30 and 39
years of age. Twenty lived in Canada and 5 in Australia.
Twenty-one of the primary participants had always been
single. Eight had some high school education, 9 had
some post-secondary education and 7 had completed
post-secondary education (education information was not
available for one participant). All but one participant had
experience with working for pay. Six had worked for less
than one year, 13 for 1-7 years and 5 for more than 7 years.
Sixteen of the participants reported drugs and /or alcohol
use prior to their first episode. Each primary participant
selected a pseudonym to maintain confidentiality.

The 15 secondary participants were 10 parents, three
siblings and two friends. Document analysis included
the medical health records for each participant and personal
documents and records, such as school reports and personal
journals. The six key informants included specialists in
psychology, disability counselling and occupational therapy.

social foundations were disrupted and even profoundly
damaged. For example, the participants were left to deal
with the fall-out of the dissolution of committed relation-
ships, uncharacteristically poor grades at school, quitting
jobs, withdrawal and expulsion from school, security
measures prohibiting their access to community environ-
ments and large debt loads.

Vulnerability to disengage from activities and social
participation increased in the wake of damaging events
related to the first episode. The analysis suggested six
critical tasks that the participants negotiated in order to
reconnect with previous patterns of activity and social
participation or to establish new patterns after the fall-out.
These critical tasks are developed below.

Six critical tasks for re-engagement in
activity and social participation

1. Making new plans
Ten participants had been students in the year prior to
their first episode and three had returned to school in the
period following the first episode. The participants expressed
uncertainty about the direction for studies, with the loss
of previous goals and expectations:

C: I used to want to go to school, get away from home and
everything, but now I don’t have any of those [goals].

Participation in paid or volunteer work was the main
productive activity for 13 of the study participants in this
period of recovery. All worked part time or reduced hours
compared with their pre-psychosis productivity histories.
Those with established work careers returned to modified
schedules in their previous jobs or were developing new
career alternatives. Younger participants, not well established
in work careers, were involved in unskilled work activities,
several arranged with the assistance of formal vocational
services or through family connections. Their productivity
activities were not explicitly connected to personal interests
or future career goals.

For some participants, their future orientation was
characterised by a sense of hopefulness that they would
recover order, direction and meaning in their lives:

J: I feel now that I know what has been given to me I have
the potential to direct it into a desirable path that would
lead me somewhere.

For others, it was characterised by the distressing experience
of uncertainty:

K: I’m really scared of what my future is going to be like,
what’s going to happen.

Efforts to construct a future vision extended to support
networks – people who were invested in the individual’s
recovery of activity and social participation. This quote
by the father of one young man illustrates his distress
regarding messages received about his son’s future and his
efforts to imagine a hopeful, albeit modified, view:

Table 1. Social and demographic characteristics of primary
participants

Gender Male: 17
Female: 8

Age at time of first episode Mean: 25.7
Range: 18-39

Country of recruitment Canada: 20
Australia: 5

Marital status Always single: 21
Separated/divorced: 2
Married: 2

Education level Some high school: 8
Some post-secondary: 9
Post-secondary complete: 7

Work experience No work experience: 1
Less than 1 year: 6
1-7 years: 13
More than 7 years: 5

Self-report of substance use Yes: 16
prior to first episode

Findings
Recovering from the fall-out
The participants experienced variable patterns of decline in
managing activities and social relations prior to their first
episode. Nevertheless, the first acute episode was experi-
enced as a period of chaos, with an abrupt breakdown of
meaningful activity and social participation. Activity and

16 British Journal of Occupational Therapy January 2010 73(1)

Activity and social participation in the period following a first episode of psychosis and implications for occupational therapy

P’s father: We [parents] are both trying to keep an open mind
and to find information. I’m reading more off the internet but
I have to watch what I read because it’s so depressing. You
seldom see happy stories. They use words like ‘devastating’,
‘worst illness’ and we honestly haven’t seen this. We are on
pins and needles. We wonder if there is more coming, if he
hasn’t peaked out … We hope that he gets married some day,
just has a life that’s normal. Mostly I want him to have a
relationship and work could follow. It would be nice if he
had children but if not the important thing is that he not be
alone, that he has someone.

2. Developing a balance of activity and
social routines
Compared with their lives prior to the first episode, the
daily routines of activities were less full and less socially
connected. The decrease in productive activities was
particularly notable. Other activities did not necessarily
offset the unsettling experience of unstructured time:

An: It’s full and yet it’s empty at the same time. I don’t know
what to do with myself most of the time, but at the same time,
working as much as I am now, I don’t want to work any more.

Leisure pursuits helped to fill the void and included
both new pursuits and familiar interests. A prevalent theme,
however, was that leisure had become problematic for
reasons including reduced experiences of pleasure, limited
finances and disrupted connections to friends. The loss of
context, structure and goal-direction for activities could
also upset the routine for self-care and home management
activities, illustrated poignantly by this quote:

Am: I sleep until about 12:30 or 1. I have my computer in
my apartment which I spend a lot of time on … I’ve got a
membership at the gym. I’ll go one week and then not the
next … It does reach the point where it’s almost as if I ask
myself well what’s the point in having a shower each day, if I
don’t see people there’s not that need for it and sometimes I
let myself get away with thinking like that, but in general,
yes I do take care of myself.

3. Participating despite disturbances in emotional
connection to activities and socialising
The participants experienced a disruption in their emotional
connection to activities and social interactions. Several
descriptions of the nature of this emotional disconnection
emerged:
■ Feelings of apathy, the deadening of emotions and

reduced feelings of pleasure in valued activities and
social interactions:

M: Feeling very numb and not awake or alive to anything
around me, that sort of thing. Listening to music just didn’t
have any kind of appeal.

The participants described their efforts to go along
with involvement in activities with friends and family
despite the lack of pleasure that they experienced.

■ A sense of loss of purpose and meaning through
participation, even in the context of longstanding
interests and commitments. Searching for meaning
through spiritual readings or groups was one response
to this experience.

■ Loss of interest in activity and social participation
because of concentration, fatigue and other mental
capacities. A key informant described how expressions
of boredom may reflect a type of emotional coping
response:

KI: They will just lose interest. It is too hard to be part of it,
so they say they are bored, they couldn’t care less, and this is
reflection of their loss, their experience of failure.

■ One father described his son’s experience as an ‘identity
problem’ that disconnected him from previously valued
activities. Family and friends helped him to reconnect
with ‘who he was’ through photographs, videos and
activities, and also ‘what to do’ by organising and
supporting plans for daily activities.

4. Matching participation to the recovery of
performance abilities
The participants negotiated activities and socialising with
ongoing functional limitations attributed to the psychosis
or medical treatments. Difficulties included initiating
and sustaining activities, decreased tolerance for physical
or mental effort and the need for more sleep. Some
participants managed symptoms, such as hallucinations,
within daily activities:

P: For some reason when I’m at work [the voices] all seem to
be worse and I have no idea why, but I just put them in the
back of my head and I don’t even think about them.

Family and friends were encouraged by efforts on the
part of the individual to participate in daily activities
with other people, but this was tempered by uncer-
tainty about levels of tolerance and concerns about
negativity, loss of confidence and damaged self-concept.
This mother, for example, described her efforts, and
those of friends, to encourage her son in the face of his
disturbed self-concept:

An’s mother: Our phone conversations are constant. We
reinforce how well he is doing. He says a lot that I’m never
going to get better. He needs reminders of how well he is
doing … He has very low self-esteem. When he was home
last he did go out with his friends. They are very supportive
and they know what’s happened to him … Last time he
actually initiated contacting them … The day he came out of
hospital they were right there to take him out, yet he says he
has no friends.

Matching participation with capacities was compli-
cated by caution about the relationship between stress
and psychosis. The participants received professional
information that highlighted vulnerability to stress,
yet meeting demands and challenges was considered

17British Journal of Occupational Therapy January 2010 73(1)

Terry Krupa, Harriet Woodside and Karen Pocock

fundamental to meaningful activity and social participation.
Without a history of engaging in activities with psychosis,
the personal stress-illness relationship was unknown and
could lead to a global sense of weariness:

P’s mother: I’ m happy he’s working and we have been
encouraging him to look for work, but we don’t want to
cause him any stress, and changing jobs has stress. What
if he can’t handle the stress? Yet he hates where he is
working. From what I’ve read even having a girlfriend
can be stressful. He seems to be OK but you end up
worrying, will he be OK? That’s the reason so many don’t
get married. It’s too stressful. I read conflicting information.
I was reading something yesterday that said that stress
doesn’t cause the illness to get worse.

5. Managing new self-care and social skills
In the process of engaging in meaningful activities and social
participation, there were new demands on performance.
Integrating new knowledge and skills for relapse prevention
was a common example. Managing medications was a new
self-care activity, which was complicated by side effects
such as disturbed sleep, weight gain and the ‘numbing’
sensation that interfered with activities.

Socially, the participants could be faced with ‘mending
fences’: actions to re-establish important social and activ-
ity connections in the wake of disruptions that occurred
during the acute episode of psychosis. This included
the need for self-advocacy. For example, one young
man’s behaviour on campus while psychosis emerged
had him banned from campus, a ruling that needed to be
overturned if he was to return to his studies. Such social
disruptions could be emotionally challenging for the
participants, embarrassing and, as this quote illustrates,
require coming to terms with events that were inconsistent
with self-identity:

J: You can’t beat yourself up, don’t dwell on the silly things
that you did. I still struggle with thinking negative things. I
beat up a guy when I wasn’t well. I met up with him and
when he opened the door I punched him in the face. I feel
really totally guilty about this. This is not something I would
ever do.

The experiences with psychosis presented a new,
complicated set of social concerns, including how to
disclose their experiences with psychosis to friends, to
new social contacts and within romantic relationships.
Central concerns were the negative impact of social
judgements about mental illness and ways to maintain
control of personal information:

Si: I feel that there’s assumptions made about me that aren’t
necessarily true. I guess there’s a stigma with it too …
I don’t mind saying it to some people as long as I offer the
information. But it’s when other people talk about it and
they make assumptions and discuss it within themselves
and say certain things. Not that I necessarily know anyone
said anything.

For three individuals, psychosis dramatically exposed
the extent of their substance use and precipitated the
reconstruction of daily life free of substances. One mother
described her son’s first small steps towards substance-free
activity:

St’s mother: In high school he used marijuana and became
sluggish, not wanting to go to school. He went from A’s in
English to passing in the last two years but he needed encour-
agement. He just shut down, becoming too hard … At 18 he
experienced blackouts. We would wait up for him when he
came home very drunk. He couldn’t cope. I would bring him
myself sick and vomiting. He didn’t really tell us about it …
He has been through hell. Now he rests until about 10 or 12.
He’s only been out of hospital for four months. Watches t.v.
Will go out for a drive. Attends AA [Alcoholics Anonymous]
and NA [Narcotics Anonymous] and interacts with others.
He’s starting to do weights and he picks up our grand kids.

6. Managing changed conditions and contexts
for activity and social participation
The participants found themselves engaged in activity and
social participation closer to home and more dominated
by family involvement than before the first episode. There
was a greater reliance on family for emotional, financial and
practical support. Families arranged for community work
experiences using their own social networks, prompted
others to extend invitations for recreational activities and
provided assistance with completing self-care and home
management tasks. These family relationships were
characterised as relatively more dependent and child-like:

M: Like I’ve grown up, but I’m not grown up.

The experience of psychosis also brought concerns
related to financial management and security that
constrained participation. This included the negotiation of
the financial aspects of receiving medication. As this quote
from a participant’s father illustrates, covering the costs
associated with medical treatment could derail career
planning and, ultimately, autonomy:

P’s father: His drugs cost about $500 every few months and
how is he going to afford this and live with a job that has no
benefits? We have claimed him on our own plans as a full-time
student because he was a student and school hasn’t started
yet this year … I don’t know what he will do in September. I
know his doctor doesn’t want him to go on disability but
why would anybody with a mental illness not? How can you
expect them to work just to pay for their medications? If he
wasn’t here at home I don’t know what he would do.

Among these participants were examples of people with a
range of significant financial losses and challenges, including
loss of paid employment and loss of educational scholarships,
surviving on limited funds from disability pensions and loss
of material resources in the context of intimate relationships
that dissolved. Financial losses compromised the control of,
and access to, activity and social participation.

18 British Journal of Occupational Therapy January 2010 73(1)

Activity and social participation in the period following a first episode of psychosis and implications for occupational therapy

The participants experienced fewer opportunities to
develop new peer social relationships through activities.
For the younger people in the study, there was a general
pattern of decreased contact with established friends
who had moved away from home. Marital relations were
strained by compromised finances and shifting roles and
responsibilities. Although many unmarried participants
expressed a desire for intimate relationships, others expressed
concerns about their potential to have children, loss of
desire for intimate closeness, level of confidence for dating
and, as this young man highlighted, concerns about the
potential impact of dating on mental health:

St: I haven’t got a girlfriend at the moment. I want one though
(laughing). It’d be nice to have a girlfriend, but I think I’ve
got to look at myself before I actually take on a relationship
again because I want to be strong within myself before I
actually take on a relationship again.

Discussion
This study contributes to the understanding of the
patterns of activity performance and social participation
in the period following a first episode of psychosis.
Although the size of the sample and the use of theoret-
ical sampling procedures enhance the trustworthiness
of the research, it may be that important perspectives
have been excluded. For example, the activity per-
formance and social participation of those with poorly
treated illnesses or those who have recovered from
psychosis without interventions from the health care
system are not represented.

The findings reveal many challenges that complicate
activity and social participation following the first episode
of psychosis. The study describes the efforts of the partic-
ipants to engage in activities and socialising despite the
challenges that they faced. This included active efforts to
connect activities and social contacts to personal interests,
needs and strengths. The participants coped with features
of psychosis and engaged resources to support their
activity involvement despite their relative inexperience
with mental illness. These are not small considerations.
They remind service providers that adaptive capacities
are present even with very early …