title: The child with a tracheostomy and gastrostomy: parental stress and coping in the home--a pilot study.
abstract: Caring for the technology dependent child in the home creates parental stress. Parenting children with device-based respiratory support is particularly stressful as changes in this area can be immediately life threatening. A retrospective pilot study was conducted to describe perceived stressors and coping strategies of the primary caregiver of a child with a tracheostomy and gastrostomy. A convenience sample of 50 families who had a child that received a tracheostomy and gastrostomy in the past two years at our hospital was invited to participate. Three questionnaires were used: the Impact on Family Scale (Stein & Riessman, 1980), the Family Crisis Oriented Personal Evaluation Scale (McCubbin, Olsen, & Larsen, 1981), and a demographic tool. Eighteen (36%) primary caregivers completed the questionnaires. Findings suggest caregivers were coping and perceived themselves as financially stable. However, these data also revealed that caregivers believed there was disruption of social interactions within and outside the family because of the child's condition. Data indicate a need for developing home care plans that include respite services.
authors.affiliation: Progressive Care Unit, Texas Children's Hospital, Houston, TX, USA.
authors.forename: Barbara A
authors.initials: BA
authors.lastname: Montagnino
authors.forename: Rizalina V
authors.initials: RV
authors.lastname: Mauricio
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D017028:Caregivers / Q000193:education / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D005260:Female; D005774:Gastrostomy / Q000451:nursing*; D006699:Home Care Services; D006701:Home Nursing / Q000193:education / Q000523:psychology*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D020380:Needs Assessment; D015404:Nursing Methodology Research; D010290:Parents / Q000193:education / Q000523:psychology*; D010865:Pilot Projects; D012144:Respite Care; D012189:Retrospective Studies; D013315:Stress, Psychological / Q000209:etiology* / Q000517:prevention & control / Q000523:psychology; D011795:Surveys and Questionnaires; D014139:Tracheostomy / Q000451:nursing*