Effects of VIPP-V training in early intervention with parents of (very) young children with visual impairments or visual-and-intellectual disabilities.

Each year in the Netherlands, there are approximately 880 (very) young children
with a visual or visual-intellectual disability receiving care from Bartiméus
and Royal Dutch Visio. For parents of infants diagnosed with a visual or
visual-intellectual disability such diagnoses may come after a period of worry
and uncertainty because infants with these disabilities respond differently to
their caregivers (Howe, 2006). The period around the diagnosis is often highly
emotional and can be characterized as a period of crisis, giving way, later on,
to a gradual process of adaptation
(Glidden & Jobe, 2009; Schuengel et al., 2009). It is, however, important to
acknowledge that the period of diagnosis and the surrounding emotional and
practical upheaval coincides with a very important period in children*s lives,
in which they lay the foundations for their development within close
relationships with their parents. The development of secure attachment
relationships with parents is fundamentally important for healthy and resilient
development (Sroufe et al., 2005), especially so for children with disabilities
(Baker et al., 2007; Schuengel
& Janssen, 2006). Early intervention services have been developed that offer
support in adapting to the disability and promoting optimal development. These
interventions are not evidence-based and transferable through written
protocols. Current early interventions for children with a visual impairment or
with multiple disabilities are said to focus mainly on social, physical and
cognitive development. Interventions take place in the home and use video for
focusing on interactions, but there is no protocol. It is therefore unclear to
what extent the interventions include the components that have been proven
effective for improving the quality of parent-infant interaction. Preisler
(1991, 1997) suggested that too little systematic attention is given to the
parent-child relationship in early intervention for parents of children with a
visual impairment.

Scientific insights on the importance of sensitive parenting and secure
attachments for social-emotional development increased enormously, for children
with (Schuengel et al., 2013) and without disabilities (Juffer at al., 2008).
For children without disabilities, this has lead to considerable progress in
evidence-based intervention. A meta-analysis on interventions
(Bakermans-Kranenburg et al., 2003) indicated that interventions focusing on
sensitive parenting showed significant positive results and were more effective
than interventions with a broad focus, for example on social support. Based on
these findings, Video-feedback Intervention to promote Positive Parenting
(VIPP; Juffer et al., 2008) was developed, with a variant focusing on Sensitive
Discipline (VIPP-SD; Van Zeijl et al., 2006). Randomized clinical trials have
shown effects on maternal sensitivity, through sensitivity on attachment, and
on behavior problems and stress regulation (Velderman et al., 2006; Van Zeijl
et al., 2006; Bakermans-Kranenburg at al., 2008; Moss et al., 2011). VIPP-SD
has been certified in the Dutch registry of evidence based youth interventions.

For parents with children with a visual impairment the focus on the
parent-child relationship is very important as the child*s behavior and
interaction, their attempts to communicate with their parents, are so different
and difficult to understand (Howe, 2006). Also, the parent may experience the
child to be unresponsive due to absence of emotional expressions, e.g. the
child having a blank face (Tröster & Brambring, 1992). For parents with a child
with a visual and an intellectual disability this may also be the case due to
the relatively slow speed at which the child processes social information and
therefore the delayed reaction given by the child, or even the absence of a
reaction (Anderson, 2001).
Howe (2006) noted that due to the difficulty to understand and interpret the
child*s needs and behaviors, parental stress may increase, reducing the
emotional availability of the parent, and therefore the parent may be a less
responsive caregiver. Through early intervention programs parents can learn to
relate with their blind children in a sensorily appropriate and attuned ways
(Affleck et al., 1997). The problem chosen to study is therefore to address the
gap in evidence-based early intervention with infants with visual and
visual-intellectual disabilities, building on the model of proven effective
interventions in other populations.

The need for evidence-based interaction support was identified recently in a
*best practice on video feedback* working group of professionals at Bartiméus
(Braams et al., Bartiméus, 2011) and affirmed by a survey we did among parents
using the current early intervention programs at Royal Dutch Visio and at
Bartiméus.

The project aims to adapt Video-feedback Intervention to promote Positive
Parenting (VIPP) for parents of children with visual and visual-intellectual
disabilities (VIPP-V), to test the resulting program on its effectiveness, and
to prepare the field for broad scale implementation if the program is
effective. By doing so, the quality of attachment relationships between parents
and children will improve, which contributes to development of good mental
health and resilience against stressors. This is achieved by giving parents the
opportunity to notice specific behaviour of their child, to adequately
interpret the specific behaviour and to respond accordingly. Within the
attachment theory the combination of these skills is defined as 'sensitivity'.
VIPP with adjustments was also found to be effective intervention for various
difficult parenting situations, for example for parents with a child with
autism (VIPP-AUTI), with a child with challenging behaviour (VIPP-SD; Juffer et
al., 2008), and for parents with learning disabilities (VIPP-LD). Researchers
of the VU University and the University of Leiden will collaborate when
adapting VIPP to VIPP-V, as has been done before in the development of VIPP-LD
(Hodes et al., 2012). VIPP is deemed more suitable for intervention with
parents of young children with a visual or visual-intellectual disablility than
the CONTACT program, which has been shown to be effective in intervention for
carers of adolescents and adults
with visual and visual-intellectual disabilities (Damen, Kef, Worm, Janssen &
Schuengel, 2011). However, the expierence and knowledge gained in the project
CONTACT will be used in the current project.

The scientific research questions that will be answered are:
1. Based on literature, which adjustments of the VIPP should be made for the
VIPP-V?
2. Do families receiving VIPP-V show higher parenting self-efficacy, parental
sensitivity, a higher quality of parent-child relationships and lower levels of
parenting stress compared to families only receiving the early intervention as
provided by Bartiméus and Royal Dutch Visio at the moment (care-as-usual)?
3. How do professionals working with VIPP-V rate the social validity
(usefulness, difficulty, feasibility) as a potential component of early
intervention?

To answer the first research question regarding which adjustments of the
VIPP-program should be made for VIPP-V a literature search will be done.
To answer the second and third research question regarding the effectiveness
and social validity of VIPP-V a randomized controlled trial (RCT) with two
groups will be conducted. 50 parents will receive Video-feedback Intervention
to Promote Positive Parenting Visual impairments: VIPP-V + care-as-usual and 50
parents will receive care-as-usual only.

A cohort will be recruited from the population of parents receiving early
intervention services from Royal Dutch Visio and Bartiméus. Parents of children
older than 9 months and younger than 5 years, with a visual impairment or
visual-andintellectual disability will be asked to participate in the study.
Using stratified randomization, equal representation of families from both
Royal Dutch Visio and Bartiméus will be achieved, as well as equal
representation of children with varying developmental ages. Pretest (before the
start of the intervention), posttest (after the end of intervention) and
follow-up (three months after finishing intervention) data of both groups will
be gathered. Changes in the experimental group with VIPP-V will be compared
with changes in the control group with care-as-usal. If changes in the
experimental group are more positive, then this constitutes evidence that
implementation of VIPP-V will improve early intervention.

Parents of a child with a visual impairment as well as parents of a child with
a visual-and-intellectual disability can participate in this study. As the
sensitivity of the parent, parent-child interaction, parental efficacy and
parental stress are the primary outcome variables, higher scores on sensitivity
and efficacy are expected for parents with a child with a visual impairment as
well as for a parent with a child with a visual-and-intellectual disability.
However, to be sure about this exploratory analysis on the effect size will be
done concerning the included two sub-groups (children with a visual impairment
and children with a visual-and-intellectual disability). The CONSORT Statement
Guidelines for RCTs will be
used for publication (Schulz, Altman, Moher, 2010).

VIPP-V consists of 7 home-visits. Five regular home-visits which are scheduled
every other week, and two boostersessions in the next two months. Trained
intervention workers will provide VIPP-V to the families, according to a manual
with the goals and activities for each home visit.
Through video-feedback the parent-child interaction of each individual
parent-child dyad will be analysed and discussed. This way families of
different cultural backgrounds can participate in the intervention and in the
study. If necessary interpreters will be used to translate the video-feedback.
Parents in the control condition will receive care as usual: early intervention
as ordinarily offered by Bartiméus and Koninklijke Visio.

Early intervention is generally offered every two weeks to about every three
months, depending on the needs of the parent. Although the frequency of care in
the care-as-usual group is lower than the frequency of care in the group of
parents who receive VIPP-V, it is important that the frequency of the
care-as-usual remains as it normally is offered. If parents would generally
receive no intervention, another design such as a waiting-list control group
would have been appropiate. Since parents already receive early intervention it
would be ethically unacceptable to deny them this care, therefore a
care-as-usual design has been chosen.

Before pretest parents will be asked to fill out a questionnaire regarding
demographic information: age, cultural and social-economic background, health
of parents, severity of disability of the child, medical background of the
child, use of medication of the child, age and possible disabilities of
siblings. At pretest parents will be asked to fill in two questionnaires about
parenting stress and parental self-efficacy. Also, parent and child will be
asked to participate in a play task (Three Boxes, NICHD, 1999). Video-tapes of
this play task and answers on the questionnaires will be used to determine the
primary outcome measures. The total duration of each measurement is
approximately 1 hour for parents and half an hour for intervention workers.

Parents who meet the inclusion criteria will be informed about the study. They
will receive a letter approved by the medical ethical committee of the VU
medical center. This letter will be sent by the organisations with an
accompanying letter of the organisation. Parents will be asked to consent to
participate in the study. If parents have questions about participation or the
study in general they can phone or mail to one of the eight VIPP-V coaches
working at Royal Dutch Visio and Bartiméus. If they wish to mail the
researchers this is also possible. Independent professionals will also answer
questions if necessary. After each assessment parents will receive a small gift
(a ball, puzzle, etc.) for their child.
Not participating in the study will have no effect on the regular early
intervention program parents receive. It will have no consequences for the
parents if they decide to withdraw during the intervention, the care-as-usual
will then continue. When the study is finished, all parents will receive a
report on the general effect of VIPP-V. If parents would like to receive
information on their individual results, they will receive the information via
the early intervention worker.

Employees in early intervention for parents of children with visual or
visual-intellectual disabilities of Bartiméus and Koninklijke Visio have been
closely involved in this project from the start. They will remain closely
involved during and after completion of this project. The parents' association
FOVIG is also closely involved in this study from the start and supports this
project wholeheartedly, as can be seen in the composition of the project group.
Viziris is a network-organisation of and for people with a visual impairment.
After consultation with mr. Hulsen, mrs. Haaijer, mother of a daughter with
multiple (also visual) disabilities, has been asked to participate as a client
representative on behalf of
Viziris.

The 'Video-feedback Intervention to Promote Positive Parenting (VIPP)' training
will be adapted into the VIPP-V, which will focus on the specific behavioural
repertoire of children with a visual impairment or visual-and-intellectual
disability. The VIPP-V will consist of 7 home visits. Five regular home visits
every other week, and two boostersessions in the next two months. The VIPP-V
sessions will be conducted by specially trained early intervention workers. VU
University Amsterdam and Leiden University have extensive experience in
training professionals in VIPP and maintaining treatment fidelity through
regular supervision.

The early intervention workers use a protocol in which the goals and activities
of each home visit are described. The first part of every home visit will be
used to video-tape parent-child interaction. The second part of each home visit
is used to discuss the behaviour of the parent and child through
video-feedback. Parents will learn how they can interpret and understand the
behaviour of their child with a visual impairment or visual-and-intellectual
disability. Furthermore, sensitive and responsive ways of responding to the
child*s behaviour will be discussed. VIPP-V is based on the
attachment theory, focusing on increasing parental sensivity and the
parent-child interaction. In order to answer the question whether VIPP-V is
effective, changes in the experimental group with VIPP-V will be compared to
changes in the control group with care-as-usual (CAU). If changes in the
experimental group are more positive, then this constitutes evidence that
implementation of VIPP-V will improve early intervention. Given sample size and
time restrictions, no attempt will be made to dismantle the effective
components of VIPP-V using a more complex design.

In this study parents will be asked to fill out several questionnaires, the
approximate time consumption for this is estimated at 3 hours. None of these
questionnaires will pose a risk to the parents.

In addition, parents randomized into the experimental condition will
participate in VIPP-V (7 home visits of 1.5 hours each = 10.5 hours in total).
Eventhough participating in VIPP-V will ask a time investment of parents, we
expect parents who participated in VIPP-V will learn to better interpret
signals of the child, which may improve the parent-child relationship.

Experiences as learned from the study "What Works" (VU FPP), will be used to
minimize potential risks and burden.