Background:
A lack of education, resources, and support for family carers of young adults with
psychotic illnesses leaves them ill-equipped to support their loved one. Often family
carers are excluded from the discharge planning process or are unaware of how to support
of their loved one in community. Although best practice documents champion family
involvement the implementation of these guidelines is challenge and families are often
excluded from care.There is evidence of the disparity between best practice documents and
true practice in the literature.
Family inclusion also addresses the impact of psychotic disease on the family's
functioning and mental health. Psychotic illness (e.g., anosognosia, paranoia) can
interfere with relational health and the natural maturation of family relationships over
time. Families face extreme challenges when supporting a young adult with psychotic
illness including social isolation, likely because their typical social supports are
unable to relate to their situation, prompting them to seek support with those who share
their situation (i.e., family support groups). Family carers, even in the face of these
hardships, work with great tenacity toward improving service user stability in community.
There is a lack of high-quality effectiveness research showing longitudinal evidence for
treatment effects on the carer and the young person in family psychoeducation groups. For
example, one study provided a family intervention that was primarily knowledge- and
support-based. These researchers used a pre-post design to assess the mental health
knowledge, but did not assess long-term effectiveness of the group, overall family
functioning, and functioning of the service user.
The intent for this longitudinal pre-post study is to evaluate the effect of skills-based
educational programming for family carers supporting young adults admitted to or
discharged from hospital with psychosis of any etiology on 6-month and 24-month service
user readmission rates and service user/family functional indexes. The investigators
hypothesize that system integration of a program which delivers early support for the
family carers by way of an educational intervention beginning prior to or shortly after
hospital discharge may reduce family burden as well as improve short- and long-term
patient outcomes. To the investigators' knowledge, this study is the first to evaluate
effectiveness of a family carer skills-based education intervention within a public
healthcare system.
The investigators will use a longitudinal pretest-posttest design with a non-equivalent
control group to evaluate the short- and long-term effectiveness of this family
psychoeducation intervention. While a control group can be used for comparison of the
service utilization data for young adults with psychosis using archival data from health
records, gathering long-term control group data from families not participating in the
trial is unethical in that denial of an intervention for up to two years is potentially
harmful to both the families and the young adult they support. Likewise, control group
data gathered directly from young adult service users presents the same ethical problem.
Using archival health utilization data, however, allows us to exclude any service users'
whose families have elected to access the psychoeducation program within the 2-year
timeframe of the study. This allows us to find control data for health service
utilization while not withholding the psychoeducation intervention from those who seek
it. The investigators acknowledge that the control group is non-equivalent because
families and service users who chose not to engage in the study may vary systematically
from those who did.
Each measure will be taken pre-intervention (i.e., baseline), post-intervention, then
again at 6- and 24-months post-intervention. A gift card incentive ($25.00 per data
collection meeting) will be provided to family and young adult participants as a token of
appreciation for their participation.
Service utilization data will be collected for 12-months pre-intervention to be compared
to 12-months post-intervention and 12-24 months post-intervention.
Recruitment:
Study information will be disseminated by clinical teams and through community
organizations, and family carers meeting eligibility criteria will self-identify for
participation. Once recruited, and with family consent, young adult service users of
participating family carers will be contacted for recruitment into the study.
Measures:
A variety of measures will be used to collect functional index data for the family
members and the young adult service users. Health utilization data will be mined for
12-months pre-intervention, and up to 24-months post-intervention to assess long term
service user outcomes. See Outcome Measures section for details.
Secondary Data Control Group:
While randomization into treatment and control groups was not feasible for this study,
non-equivalent control group data can be mined from health records for young adults whose
family did not participate in the study.
Intervention:
The educational modules are developed by experts in the areas of interest and are
evidence based, family peer-informed and expert peer-reviewed. The curriculum consists of
9 modules delivered weekly over 9 weeks. Evidence-based content includes the
Listen-Empathize-Agree-Partner (LEAP) communication Program, and Acceptance and
Commitment Therapy. The family psychoeducation classes are to take place at a designated
AHS location.
Limitations and Conclusion:
The described protocol is one of the first attempts in the literature to evaluate an
evidence-based intervention for carers of young adults with psychotic illness. The
current study builds on others by incorporating psychoeducational elements, modules
specific to the LEAP approach, and modules specific to ACT. Furthermore, the design of
the study intends to gather longitudinal 24-month post-intervention data from carers and
service users, including health service utilization data.
Several limitations must be considered with regards to this protocol. First, using a
pre-post design the investigators cannot draw causal conclusions regarding the effect of
the intervention. To address this limitation the investigators will use secondary data
from health records as a non-equivalent control group for health utilization data. A
second limitation is that participants self-select for the study, and may differ
systematically from those who choose not to participate. For example, the sample will
likely be biased towards families who are already supportive and involved in their young
adults' care. The sample of young adults participating will be additionally biased
because those who are especially unwell may be unable to participate. By comparing the
health utilization data of the participants to the nonequivalent control group in a
longitudinal design the investigators will gain some evidence to rule out history
effects. Even with these limitations, the described design builds on existing knowledge
of effective family psychoeducation groups and their long term effects on young adults
experiencing psychosis.