Resourcefulness Intervention With Parents of Technology-Dependent Children

Technology-dependent children, those who rely on medical equipment such as mechanical
ventilation or feeding tubes for daily care at home, are among the sickest and most
vulnerable subset of children with complex chronic conditions. An estimated 600,000 children
in the United States are technology dependent and live at home, and are cared for primarily
by their parents. These parents report greater levels of depressive symptoms and stress than
other caregiver groups. In addition, these caregivers report poor psychological and physical
health that compromise their caregiving capacity and increase their use of emergency rooms
(ER) for their children's care needs. Despite these adverse consequences, there are no
interventions to meet the needs of these caregivers and their children. Resourcefulness
Training, (cognitive-behavioral self-management intervention) has been shown to improve
psychological and physical outcomes, mediate the effects of stress, and enhance the care
provided to care-recipients. It will be tested in a randomized trial against an
attention-only control arm. The intervention arm will receive an intervention that includes:
a face-to-face session for teaching social (help-seeking) and personal (self-help)
resourcefulness skills; ongoing access to video vignettes of caregivers of
technology-dependent children describing resourcefulness skill application in daily life; 4
weeks of skills' reinforcement using daily journal writing; weekly phone calls for the first
4 weeks; and booster sessions at 2 and 4 months post enrollment. The Attention Control arm
will receive weekly phone calls for the first 4 weeks and at 2 and 4 months post enrollment
plus any usual care. The aims of the study are to: 1) Determine whether Resourcefulness
Training versus Attention Control improves psychological (general mental health, depressive
cognitions, depressive symptoms, appraised stress, burden) and physical outcomes (general
physical health, chronic stress [hair cortisol]) and family functioning over 6 months in
parents of technology-dependent children, after controlling for the parents' race/ethnicity,
sex, family income, and children's functional status; and 2) Determine whether changes in
psychological and physical outcomes and family functioning are mediated by changes in
parents' levels of resourcefulness (personal and social). Data collection will take place at
baseline then 6 weeks, 3 months, and 6 months post-enrollment. Our study will be the first to
test a resourcefulness intervention for this caregiver population and to include male as well
as female caregivers. This intervention is distinctive in that it uses web, telephone, and
journal components for reinforcement—not multiple face-to-face visits that can be labor
intensive. If shown to be efficacious, it can be easily replicated with other populations
with strong potential for translation into practice.

Inclusion Criteria:

- parent caregiver (biological, adoptive, or foster mother, father, grandmother or
grandfather) for a technology-dependent child based on the Office of Technology
Assessment (OTA) classification criteria (Group 1, mechanical ventilator; Group 2,
intravenous nutrition/medication; Group 3 respiratory or nutritional support)

- at least 18 years of age

- able to speak and understand English due to the availability of the intervention and
instruments in English only

- the technology-dependent child must be age 17 years or younger and receive care in the
home from his/her parent

Exclusion Criteria:

- Parents of children with a cancer diagnosis will be excluded from participation due to
the potentially life-threatening, terminal nature of the illness and grief reactions
associated with a cancer diagnosis that may limit their ability to participate over
the 6 month study.