A Tele-mental Health Intervention to Support Parents Caring for a Technology-dependent Child at Home

Efficacy and Feasibility of a tele-psychotherapy intervention to support parents caring for a
technology-dependent child at home.

Caring for a technology-dependent child at home is a challenging experience for parents.
Global family functioning, lifestyles changes and vocational decisions are affected. Parents
of children whose chronic illness require assisted-technology experience significant
emotional stress, potential gaps in social support, and social isolation leading to lower
quality of life, unhealthy family functioning, and negative psychological consequences.

This study intends to evaluate a tele-psychotherapy (Tele-P) intervention as a way to promote
the emotional functioning of parents and secondarily increase the quality of life of children
that are home technology-dependent in the Greater Boston Area. The sample will consist of
parents of children that are technology-dependent in the Critical Care, Anesthesia and
Perioperative Extension (CAPE) Program at Boston Children's Hospital.

Specific Aim 1) To assess the feasibility of delivering a cognitive behavioral Tele-P
intervention for parents of children that are technology-dependent in the Critical Care,
Anesthesia and Perioperative Extension (CAPE) Program at Boston Children's Hospital.

Hypothesis 1: Parents and therapist will adhere to 8 psychotherapy sessions via
videoconferencing.

Hypothesis 2: Cost analysis evaluation will validate the feasibility of the intervention vs.
usual care (UC) and standard face-to-face therapy sessions.

Specific Aim 2) To evaluate the efficacy of a Tele-P intervention relative to UC in
management of mental health conditions amongst parents of children with chronic respiratory
failure.

Hypothesis 1: Relative to parents assigned to the UC condition, those in the (Tele-P)
condition will: a) demonstrate significant reductions in symptoms of depression, b)
significant reductions in symptoms of anxiety and c) significantly less social isolation.

Hypothesis 2: Improvement in mental health symptoms will be sustained for the duration of
therapy.

Specific Aim 3) To assess whether a Tele-P intervention increases the quality of life of
children in the Critical Care, Anesthesia and Perioperative Extension (CAPE) Program at
Boston Children's Hospital.

Hypothesis 1: Children of parents participating in Tele-P will show significantly greater
improvements in their quality of life relative to their UC counterparts on outcomes of a)
physical health, b) mental health (happiness, wellbeing), c) family life, d) free time, and
e) general life enjoyment.

Background and Significance

'Technology-dependent' is often used in the literature to describe children "who need both a
medical device to compensate for the loss of a vital body function and substantial and
ongoing nursing care to avert death or further disability". Approximately 1.2 million
children and adolescents in the United States require durable medical equipment to survive.
In the early 1990's, surveys estimated that over 2,200 children in Massachusetts were
dependent upon some degree of assisted medical technology. The number of ventilator-dependent
children in the Boston community had since increased threefold, representing increased
survival of low birth weight infants and those with chronic life-limiting illnesses. Recent
studies have shown that technology-dependent children comprise 20% of all pediatric patients
discharged from the hospital to home, yet they account for 61% of all healthcare resources
used by children. While advances in medical care have brought children with chronic health
conditions life-saving and sustaining advances, healthcare systems are inadequately
structured to meet their ongoing comprehensive needs. Most of these children are cared for at
home by parents and have substantial functional limitations including: self-care,
self-direction, capacity for independent living and economic self-sufficiency.

The need for assisted technology at home reflects some of the most serious health-related
conditions faced by children with physical and developmental disabilities and their parents.
Parenting a child is stressful and challenging, and even under ideal circumstances the care
of a child with complex needs requires greater than normal parenting skills. Parents assume
an altered parental role, serving as parent, care coordinator, respiratory therapist, nurse,
and any other function that is required for 24 hour a day care. The cost of medical care,
prescriptions, and durable medical equipment effects families independent of their employment
and insurance states. This causes an even greater burden on these already financially,
emotionally, and physically stressed parents. Prospects of independence, self-care,
self-direction with growth are not viable for some of these children, contributing to an
indeterminate need for parental effort. Cumulative toll impacts all members of the family and
may also impact medical outcomes

The investigators previous work showed that the parents of children whose chronic illness
require assisted-technology experience significant emotional stress, potential gaps in social
support, and social isolation leading to lower quality of life, unhealthy family functioning,
and negative psychological consequences. Approximately 36-45% of mothers caring for
technology dependent children have an escalated risk for clinical depression. Sleep
deprivation due to anxiety about a child's condition, false monitor alarms, and the need to
remain vigilant over the child during the night is a common theme for parents of technology
dependent children. Data suggests sleep disruption places family caregivers at risk for poor
health and related outcomes that may impair their daytime function and long term capacity for
caregiving. Raising a technology-dependent child significantly impacts family functioning and
hence the quality of life outcomes for the family. Depression and anxiety in parents
negatively affects the quality of care a parent can provide their child. Young children
exposed to depressed parents run a risk for delay in language, personal social gross motor,
and fine motor development. Increase perceived parental burden and consequent family impact
may result in negative implications on their own and their children's health related quality
of life. Support for parents is crucial not only for the course of the disease of the child
but also for the parents' health.

In the Greater Boston area there are limited specialized mental health resources and it is
increasingly difficult for parents of children that are technology-dependent to obtain
appropriate mental health treatment. Social workers currently have few evidence-based
inventions tested on families with chronically ill children. Immediate action is necessary to
provide resources to parents to help them feel motivated, confident and capable of caring for
a child. These children are extremely vulnerable and it is imperative to their quality of
life that their parents are capable of providing appropriate care. This proposal intends to
address this gap in parental care through Tele-P, a unique therapy via video conference, to
help parents cope with these daily stressors. As feelings of depression, anxiety and social
isolation decrease, parents should feel more confident and capable of caring for their child.
Technology dependent children fully rely on their caregivers in order to not only improve
their health but to survive. As Tele-P improves the mental health of the parent, the child's
care and quality of life will also greatly improve.

Tele-P can be successfully used in several therapeutic formats, has similar outcomes as face
to face treatment, and is considered satisfactory by most patients and therapist. There are
proven to be a number of benefits to home based tele-mental health including better adherence
to appointments, overcoming social isolation, access to contextual information such as the
patient's home situation, improved patient and practitioner safety and removal of fears and
stigma attached to attending a mental health clinic. Providing therapy through
videoconferencing relieves the parents from the stress of traveling with their technology
dependent children, which often requires time, resources, (such as an ambulance) and money.
For some technology-dependent children it is also dangerous for them to travel due to their
severe diagnosis. Tele-P allows for the parents to be at home with their child, but at the
same time be part of a social interaction. Studies have shown that "facing a high burden of
care but still being able to have sufficient social and familial contacts seems to be
somewhat protective regarding the mental health of these parents, pointing even stronger
towards the importance of social integration". Tele-P is a unique acceptable and sustainable
approach to address the gap in access to services for underserved populations. Feasibility
remains a question. The investigators experience with survey completion in this population
suggests that time and care demands may be a limiting factor. Given the option of electronic
paper survey in a previous study, the majority completed the latter despite computer access.
Paper was easier to interrupt and resume if the child's care was needed.

There is an urgent need for support of parents with technology-dependent children. Although
researchers have identified a plethora of risks, stressors, and needs of the families with
chronically ill child, there is a scarcity of evidence based interventions that address the
mental health needs of parents or caregivers of children with developmental disabilities.
Providing Tele-P is a well-suited approach for these parents and caregivers, who may be
overwhelmed by their children's situation, anticipating future challenges and reliving past
traumas. The results of the Tele-P sessions could also be a valuable tool to guide
intervention with policies, resources and services that may improve family quality of life
and outcomes for families who are raising children with developmental disabilities.

Inclusion Criteria:

- Parent of child cared for in the CAPE Program

- 18 years of age or older

- Lack of active mental health counseling

- English or Spanish speaking

Exclusion Criteria:

- History of psychosis in the past six months

- Receipt of any mental health treatment within the 3 months prior to study enrollment

- Future appointment with a mental health provider within the next two months and
evidence of suicidal thoughts