Status and influencing factors of disease uncertainty among family caregivers of patients with moderate and severe craniocerebral injury: a quantitative and qualitative study

Background Disease uncertainty widely exists among family caregivers of patients with moderate and severe craniocerebral injury. This negative emotional reaction will reduce the ability of family caregivers to make decisions during the critical stage of the patient, causing serious effects on the rescue and prognosis of patients with moderate and severe craniocerebral injury. Therefore, this article aims to understand the state of the uncertainty of the disease of family caregivers of patients with moderate and severe craniocerebral injury in China, to analyze the influencing factors, and to explore the specific resource of the uncertainty of the disease combined with qualitative study. The outcomes will provide a theoretical basis for formulating an accurate clinical nursing intervention strategy. Methods This study was conducted in the neurosurgery ward. A total of 214 family caregivers were evaluated using five previously validated scales: (i) Mishel Uncertainty in Illness Scale for family member, (ii) Simplified Coping Style Questionnaire, (iii) Social Support Rating Scale, and (iv) Self-Rating Anxiety Scale, (v) Zarit Caregiver Burden Interview. Kolmogorov–Smirnov was used to test the normality of the data distribution. The potential determinants of disease uncertainty were evaluated using the univariate statistical analysis. A multivariate linear regression model was adopted to assess the predictors of disease uncertainty in family caregivers of patients with moderate and severe craniocerebral injury. Objective sampling method was used to conduct semi-structured interviews with 17 family caregivers of patients with moderate and severe craniocerebral injury, and Colaizzi 7-step analysis method was used to analyze and summarize the interview data. Results The evaluated participants exhibited critically high levels of perceived uncertainty. The results of multiple linear regression showed that the influencing factors of family caregivers’ disease uncertainty were anxiety, number of other caregivers, GOS, negative coping style, and caregiver burden. The qualitative research focuses on two main topics: the sources of disease uncertainty among family caregivers of patients with moderate and severe craniocerebral injury and experience to cope with the situation. Conclusion The main cause of disease uncertainty of family caregivers of patients with moderate and severe craniocerebral injury is that patients’ disease progression and prognosis as well as caregivers’ own pressure of responsibility and negative mental status. Furthermore, caregivers’ own pressure of responsibility and negative mental status are not clear. Therefore, helping family caregivers adopt positive coping approaches, guiding them to actively seek support from family and society, improving their nursing skills, and understanding of disease progression and prognosis all play an important role in alleviating the uncertainty of the disease.