Psychological Characteristics and Adjustment in Caregivers of Children with Severe Neurodisability with Chronic Pulmunary Symptoms

Abstract

Caregivers of children with chronic illnesses or disabilities face challenges in their various roles as parents and providers of ongoing medical needs that often impact the daily life of the family. Research has shown that many of these caregivers experience emotional distress and psychological maladjustment due to multiple factors associated with being a caregiver. Little research has looked specifically at a unique group of caregivers of children with severe neurodisabilities who require varying degrees of respiratory care including ventilator support. This present study utilized data collected at the Arkansas Center for Respiratory Technology Dependent Children (ACRTDC) outpatient clinic. The data describes the prevalence of caregiver-reported experiences related to general health and psychological adjustment. It was hypothesized that this specific group of caregivers would report relatively high levels of distress related to disability severity and resulting respiratory care management plan. It was further hypothesized that family coping and constructive versus dysfunctional problem-solving styles would be predictive of general and mental health outcomes. Hierarchical regression analyses were used to test these hypotheses.

Descriptive statistics revealed that the caregivers reported symptoms that were comparable to those of the general population. Neither demographic variables nor respiratory care management scores were predictive of scores associated with somatic complaints, depressive symptoms, anxious symptoms, general health and mental health. Caregivers differed on criterion variables based on differences in one of the coping subscales that measured social support, self-esteem and psychological stability. This relationship was observed on scores of somatization, depression, general health and mental health, but not with anxiety. Social problem-solving scores accounted for significant variance in scores of caregiver distress above that accounted for by family coping. Only negative problem orientation (NPO) accounted for a significant proportion of variance in scores of caregiver health and well-being. This strong relationship was observed on scores of somatization, depression, anxiety and mental health but not general health. Implications of results and directions for future studies are presented.