KOPPeling: help from within

The Netherlands has more than 550,000 children of parents with mental illnesses
(COPMI) (1). COPMI are at risk of parentification, which term is used to
describe the role reversal between parents and their offspring, whereby the
offspring is taking over the parental role (2). This includes overtaking
logistic and household, but also emotional tasks. Due to loyalty to their
parents, parentified children often try to fulfil all the emotional and
household tasks, at the expense of their own well-being and time. The emotional
burden of their parents* mental illness causes children to stay at home as they
want to watch over their parents. Often, COPMI feel unfree to leave their
parents unattended. When COPMI engage in free-time activities, they might feel
guilty leaving their parents unattended. However, the engagement in free-time
activities contributes to the socio-emotional development of children.
Insufficient socio-emotional development has been found to be a risk factor for
the development of psychiatric conditions and negative life outcomes (3). Up to
two thirds of COPMI have developed an anxiety or mood disorder themselves in
their thirties (4), proposing a circle of parentification and psychiatric
conditions through generations.
While genetic factors associated with the development of psychiatric conditions
are difficult to alter, interventions can help to reduce environmental factors
associated with the development of psychiatric conditions, such as
parentification. A pedagogical civil society, defined as the communal
activities of the entire society, which focuses on raising children (5), can
establish a supportive safety network for COPMI. This network does not only
include family members and friends, but also staff members of schools, youth
work organisations and the municipalities. Within such supportive networks,
COPMI are relieved from parentification but also receive the necessary
emotional support. The relief from parentification, but also the emotional
support, contributes to a positive socio-emotional development, which in turn
can buffer the development of psychiatric conditions. Interventions supporting
COPMI families exist. However, the uptake of these interventions, such as free
childcare- and after-school care for COPMI families, is low. One of the reasons
is that parents are reluctant to ask for help, due to shame or the condition
itself. Beyond this, COPMI families often remain undetected although COPMI and
their parents are often treated within mental health care institutions. The
effects of the disorder on the family functioning are often not discussed
within treatments which implies that clinicians are not aware of the potential
impact of the condition on COPMI. Furthermore, COPMI often remain loyal to
their parents and do not talk negatively about the home situation.

To overcome these issues, KOPPeling (Dutch for COPMIling) has been developed in
collaboration with experts and clinicians. KOPPeling is an intervention
activating the social network. KOPPeling aims at activating the social network
of COPMI families so that family, neighbours, friends or other members of this
network can take over tasks that parents are unable to perform themselves. In
this way, COPMI are relieved of parental tasks and can give priority to
spending time on activities that are important for their socio-emotional
development. To assure the uptake of this intervention, we developed a
screening test that aims to make professionals more aware of the vulnerable
situation of COPMI and that helps in offering KOPPeling to these families.

We hypothesize that KOPPeling leads to various improvements, including an
increase in Quality of Life, a reduction of psychological problems, and an
increase in engaging in outdoor activities without feeling guilty among COPMI,
but also a reduction in parenting stress and guilt among the parents. In this
study, we will test whether KOPPeling is an effective intervention for COPMI
families and what is needed to make KOPPeling a widely applicable and
sustainable intervention.

Primary Objective:
The aim of the study is to investigate the effect of KOPPeling. Therefore, the
primary objective of the study is to answer the following question:

1) To what extent does KOPPeling lead to an increase in QoL among COPMI?

Secondary Objectives:
Furthermore, this study aims to answer the following questions:

1) To what extent does KOPPeling lead to a decrease in psychological complaints
among COPMI?
2) To what extent does KOPPeling lead to a reduction of parenting stress among
COPMI parents?
3) To what extent does KOPPeling lead to an increase in outdoor activities
among COPMI?
4) How does KOPPeling affect the feelings of guilt of COPMI when engaging in
outdoor activities?
5) What experiences have the social networks had with KOPPeling?
6) What experiences have the family members had with KOPPeling?
7) What pre-conditions are needed to make KOPPeling widely applicable?
8) What are the long-term effects of KOPPeling on the QoL and psychological
problems among COPMI and parental stress among COPMI parents?

The design of the study is a Randomized Clinical Trial with a waiting list
control group. The waiting list control group will receive the intervention
after ten to twelve weeks. A waiting list control group is used for comparison.
The intervention lasts about ten to twelve weeks. The start of the intervention
is set when the practitioner identifies that a parent has trouble fulfilling
the parental role and children*s socio-emotional development might be at risk.
To detect the situation, practitioners will use the so-called KOPP-check. The
check includes questions like: are parents aware of the influence of their
disease on family functioning, are the children aware of their parents*
condition, are the parental mental health problems discussed in the family, are
children already parentified or can they give priority to their own desires and
needs above their parents* needs. In case of a positive screen, meaning
potential risk for the children*s development, the clinician invites the family
to participate in the intervention. If the family agrees to participate and the
parents and children sign informed consent, socio-demographic data, and
baseline measurements will be taken (T0). This includes the KIDSCREEN-27 (6),
the Strengths and Difficulties Questionnaire (SDQ) (7,8), the Guilt and Shame
Questionnaire for Adolescents of Parents with a Mental Illness (9) and an EMA
diary for children (10), that will be developed for this intervention, and the
Nijmeegse Ouderlijke Stress Index (NOSI-K) (11) for the parents. For children
younger than 4 years, we will not assess quality of life or psychological
complaints. These assessments will be used to determine the effectiveness of
KOPPeling on the afore-mentioned study parameters. Children aged 12 or older
will participate in the diary study, within the first and last week of
KOPPeling or waiting list. For ten to twelve weeks the family will receive the
intervention. At the end of the intervention for families in the intervention
group and after ten to twelve weeks for families in the control group (T1), the
children and parents will fill in the questionnaires once again. After the
intervention, a purposive sample of the families* social network members will
be interviewed to discuss their experiences with KOPPeling, and professionals
involved in the intervention will complete an implementation instrument, the
MIDI (13), to establish what preconditions are needed to make KOPPeling a
widely applicable intervention. Lastly, after three months, the family
(families in the intervention group) will be invited again for a follow up
meeting to discuss the current situation and experiences with KOPPeling within
a qualitative interview and a re-assessment of the Quality of Life and
psychological complaints among COPMI and parental stress among COPMI parents,
i.e. the KIDSCREEN-27, the SDQ and the NOSI-K.

The investigational intervention is the KOPPeling intervention.

The KOPPeling intervention consists of five phases listed in the following:

1) Psycho-educating the family on the impact of the psychiatric condition on
the family dynamics, family functioning and the parenting, and on
parentification
2) Identifying which tasks are performed within the family, who is currently
performing the tasks and whether the task distribution is desirable
3)Identifying who belongs to the social network of the family and who from the
network, as well as who from the municipality can be activated to support the
family to unburden the child
4)Creating a week plan and distributing the tasks within the social network
5)Carrying out and evaluating the intervention

Per phase, one to three sessions of 60 to 90 minutes are needed. If needed,
additional sessions can be planned in. The sessions can take place at home or
at the aforementioned facilities, such as the UCP and GGZ Friesland locations.
Children aged eight or older are invited to the sessions, excluding the first
phase. The family may be asked to do homework assignments in preparation for
the next phase or session. Although the intervention is not aimed at detecting
or discussing child abuse or neglect, it may happen that abuse or neglect will
be detected. In this case, the practitioners will follow the protocol of the
reporting core of the Kindcheck (14) and meldcode huiselijk geweld en
kindermishandeling.

The potential benefits of this study, such as the improvement on QoL,
psychological problems for COPMI and parental stress for COPMI parents are
likely to outweigh the burden, which includes attending the sessions, doing the
homework assignments, and filling in the questionnaires and diaries.