Long-term psychological intervention for parents of children with prolonged disorders of consciousness: a pilot study

Gang Xu; Fuchun Hao; Weiwei Zhao; Peng Zhao; Jiwen Qiu

doi:10.3389/fpsyg.2023.1212014

Long-term psychological intervention for parents of children with prolonged disorders of consciousness: a pilot study

Front Psychol. 2023 Nov 30:14:1212014. doi: 10.3389/fpsyg.2023.1212014. eCollection 2023.

Authors

Gang Xu^#^{1

2}, Fuchun Hao^#³, Weiwei Zhao^#⁴, Peng Zhao^{1

2}, Jiwen Qiu^{5

6}

Affiliations

¹ Rehabilitation Branch, Tianjin Children's Hospital/Children's Hospital, Tianjin University, Tianjin, China.
² Tianjin Key Laboratory of Birth Defects for Prevention and Treatment, Tianjin Children's Hospital/Children's Hospital, Tianjin University, Tianjin, China.
³ Tianjin Medical College, Tianjin, China.
⁴ Tianjin Beichen Experimental Middle School, Tianjin, China.
⁵ Research Center of Experimental Acupuncture Science, Tianjin University of Traditional Chinese Medicine, Tianjin, China.
⁶ School of Medical Technology, Tianjin University of Traditional Chinese Medicine, Tianjin, China.

^# Contributed equally.

Abstract

Background: Children with prolonged disorders of consciousness experience severe intellectual and behavioral disabilities that will last for decades or even a lifetime. Parents generally experience severe anxiety, stress, sadness, or family conflicts, which can lead to abnormal parenting behavior and can, in turn, adversely affect the cognitive, emotional, and behavioral well-being of the children. This causes a serious burden on children, families, and society. Psychological interventions targeting parents using online conversations provide an opportunity to improve the overall well-being of the parents, their children, and the family as a whole.

Methods: A total of 13 patients completed the protocol. Six were girls (46.2%), the mean age was 4.5 ± 3.0 years, and the length of time before emergent from minimally consciousness state was 244 ± 235 days. A staff member with psychological counseling qualifications implemented all psychological interventions. Regular online psychological interventions were performed annually before and after discharge. Evaluation data were collected before discharge and at 1 and 3-5 years post-discharge.

Results: With the extension of intervention time, the Strengths and Difficulties Questionnaire, the Depression Anxiety and Stress Scale-21, and the Parenting Sense of Competence Scale scores showed significant improvement (p < 0.05), while the Revised Scale for Caregiving Self-Efficacy scores did not. With the extension of intervention time, the Strengths and Difficulties Questionnaire (Total Difficulties scores, TD) scores showed significant improvement (p < 0.05), while the scores did not after 1 year compared with before intervention. The Index of Child Care Environment evaluation scores declined significantly (p < 0.05).

Conclusion: Psychological interventions aimed at the parents of children with prolonged disorders of consciousness performed at least once per year resulted in significant improvements in negative parental emotions, parental self-efficacy, and emotional and behavioral problems in their children. However, the childcare environment continued to decline.

Keywords: children; family; parent; prolonged disorders of consciousness; psychological intervention.

Grants and funding

This study was financially supported by Tianjin Key Medical Discipline (Specialty) Construction Project (No. TJYXZDXK-040A), Project from the second batch of “Teaching lnnovation Team for National Vocational Education Teachers”(No. ZI2021070403) and the National Natural Science Foundation of China (NSFC) (No. 81904295).