"I Checked Her While She was Sleeping Just to make Sure She was Still Alive": A Qualitative Study of Parents and Caregivers of Children with Chronic Disease in Indonesia.

PURPOSE

Caring for children with chronic disease is a stressful and challenging experience for parents and caregivers. This study aimed to describe the experiences of parents and caregivers who cared for children with chronic disease.

DESIGN AND METHODS

A descriptive qualitative study was conducted through face-to-face interview in West Sumatra, Indonesia. Sampling was continued until saturation was achieved, resulting in eleven parents and caregiver who met the inclusion criteria. Data were collected from March to May 2019 and were analyzed through content analysis. Trustworthiness of this study was established following the criteria of credibility, transferability, confirmability, and dependability.

RESULTS

Findings revealed three categories, namely expressions of care, efforts of care, and ways of accepting the situations. Parents expressed their feeling through crying, denial, guilt, and fear of loss. Efforts of care were reflected from trying traditional healing, following health care workers recommendations, and striving to be good parents. Ways of accepting the situations were derived from motivating oneself, looking for support, and surrendering.

CONCLUSIONS

Parents and caregivers of children with chronic disease expressed various feelings and expressions since the first time they knew the diagnoses until they continued to care for their children at home and started life adjustment. The main points of concern and psycho-emotional burden on the family-care provider were identified as anticipatory grief, which occurred when the parents and caregiver realized that death maybe close after they knew the diagnoses. Another concern was regarding the appropriate way to care for the children at home, which was mostly provided by the mother.

PRACTICE IMPLICATIONS

Psychological and social support should be given to parents who have children with chronic disease, especially from peer groups with other parents of children with the same conditions. Health care providers are suggested to provide caregivers with information regarding continuing care for their children at home and involve the father in planning family-centered care.