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Learning Objective 1: The learner will be able to understand the type of stress experienced by the primary caregivers caring for children depending on oxygen therapy at home.
Learning Objective 2: The learner will be able to comprehend the needs of this group of primary caregivers and provide the practical support pertinent to the families.
Methods: The study used cross-sectional descriptive research design. In addition to the demographic data collected, there were two questionnaires used including "Perceived Family Stress Scale" and "Family Needs Assessment". Data was analyzed by SPSS Windows version 15.0.
Results: 104 subjects (F = 70; M = 34) were recruited from a pediatric otolaryngologic outpatient clinic of a tertiary medical center and "The Association of Let-Children-Breathing Happily". The average age of the subjects was 39.7 years old. Most subjects (44%) had a high school level of education background, and 42% of the subjects described their health status was poor. The perceived stress and need for support of the primary caregivers were directly correlated with the child’s age (B = 0.53, p = 0.007), the length of time of the use of oxygen daily (B = 0.37, p = 0.004), their marital status (B = -0.26, p = 0.014), and self-perceived health status (B = 0.27, p = 0.029). Moreover, the dimension of "Disruption in family function" was the main source of the stress. With respect to the needs of the subjects, support for the "medical needs of the child" was rated highest.
Conclusion: When caring for an OD child at home, their primary caregivers encountered multiple stresses in relation to the medical care and other care responsibilities at home. The primary caregivers were most concerned with the medical care and milestone resources for the OD child and expressed the needs for emotional and information support. Thus, provision of support should focus on medical and developmental care for the OD child and respite and emotional support for the primary caregivers.