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BMC Pediatrics
Published in: BMC Pediatrics 1/2023

Open Access 01-12-2023 | Glaucoma | Research

Current situation and influencing factors of disease uncertainty in parents of children with Sturge‒Weber syndrome: a retrospective study

Authors: Na Du, Yue Wu, Shanshan Xiong, Hong Ji, Lulu Huang, Wenyi Guo, Changjuan Zeng

Published in: BMC Pediatrics | Issue 1/2023

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Abstract

Background

Sturge Weber syndrome (SWS), can cause extensive capillary malformations on the face, head, trunk, and other parts of the body, and the eyes can also suffer optic nerve injury. Secondary glaucoma can cause blindness, which has the characteristics of a relatively hidden onset and unclear pathogenesis. The treatment of SWS secondary glaucoma has always been difficult, and due to the characteristics of the disease, there is uncertainty about the long-term efficacy and safety of various treatment methods for such patients.

Methods

A total of 105 parents of children with SWS completed a self-designed general information questionnaire, a generalized anxiety questionnaire (GAD-7), a patient health questionnaire (PHQ-2), a stress perception scale (PSS-4), a simple coping scale (SCSQ) and a disease-uncertainty scale (PPUS).

Results

The total uncertainty score of parents of children with SWS was 79.07 ± 13.24, and the average item score was 2.82 ± 0.47. Multiple linear regression analysis revealed that anxiety and simple coping were the main influencing factors of disease uncertainty among parents of children with SWS (P < 0.05).

Conclusions

Parents of children with SWS exhibit a high level of disease uncertainty. Medical staff should pay attention to the source of parents' disease uncertainty and provide targeted interventions, which are of great importance in reducing parents' disease uncertainty.
Literature
1.
Zallmann M, Leventer RJ, Mackay MT, Ditchfield M, Bekhor PS, Su JC. Screening for Sturge-Weber syndrome: A state-of-the-art review. Pediatr Dermatol. 2018;35(1):30–42.CrossRefPubMed
2.
Waelchli R, Aylett SE, Robinson K, Chong WK, Martinez AE, Kinsler VA. New vascular classification of port-wine stains: improving prediction of Sturge-Weber risk. Br J Dermatol. 2014;171(4):861–7.CrossRefPubMedPubMedCentral
3.
Mantelli F, Bruscolini A, La Cava M, Abdolrahimzadeh S, Lambiase A. Ocular manifestations of Sturge-Weber syndrome: pathogenesis, diagnosis, and management. Clin Ophthalmol. 2016;10:871–8.
4.
5.
Shirley MD, Tang H, Gallione CJ, Baugher JD, Frelin LP, Cohen B, et al. Sturge-Weber syndrome and port-wine stains caused by somatic mutation in GNAQ. N Engl J Med. 2013;368(21):1971–9.CrossRefPubMedPubMedCentral
6.
Wu Y, Yu RJ, Chen D, Xu L, Li M, Zhu L, et al. Glaucoma in Patients with eyes close to areas affected by port-wine stain has lateral and gender predilection. Chin Med J (Engl). 2017;130(24):2922–6.
7.
Petrongolo JL, Zelikovsky N, Keegan RM, Furth SL, Knight A. Examining uncertainty in illness in parents and children with chronic kidney disease and systemic lupus erythematosus: a mediational model of internalizing symptoms and health-related quality of life. J Clin Psychol Med Settings. 2020;27(1):31–40.CrossRefPubMed
8.
Cypress BS. Understanding uncertainty among critically ill patients in the intensive care unit using mishel’s theory of uncertainty of illness. Dimens Crit Care Nurs. 2016;35(1):42–9.CrossRefPubMed
9.
Minton C, Batten L, Huntington A. A multicase study of prolonged critical illness in the intensive care unit: Families’ experiences. Intensive Crit Care Nurs. 2019;50:21–7.CrossRefPubMed
10.
Wong P, Liamputtong P, Koch S, Rawson H. Barriers to regaining control within a constructivist grounded theory of family resilience in ICU: Living with uncertainty. J Clin Nurs. 2017;26(23–24):4390–403.CrossRefPubMed
11.
Verberne LM, Kars MC, Schouten-van MA, van den Bergh E, Bosman DK, Colenbrander DA, et al. Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study. Eur J Pediatr. 2019;178(7):1075–85.CrossRefPubMedPubMedCentral
12.
de Hosson M, Goossens P, De Backer J, De Wolf D, Van Hecke A. Needs and experiences of adolescents with congenital heart disease and parents in the transitional process: a qualitative study. J Pediatr Nurs. 2021;61:90–5.CrossRefPubMed
13.
Webster M. The cycle of uncertainty: parents’ experiences of childhood epilepsy. Sociol Health Illn. 2019;41(2):205–18.CrossRefPubMed
14.
Yali P, Jing L. Correlation between parents’illness uncertainty and psychologic statusin children with idiopathic membranous nephropathy. Henan Med Res. 2021;30(32):6045–8.
15.
Spitzer RL, Kroenke K, Williams JB, Lowe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166(10):1092–7.CrossRefPubMed
16.
He XY, Li CB, Qian J, Cui HS, Wu WY. Reliability and validity of ageneralized anxiety disorder scale in general hospital outpatients. Shanghai Psych. 2010;22(04):200–3.
17.
Kroenke K, Spitzer RL, Williams JB. The Patient Health Questionnaire-2: validity of a two-item depression screener. Med Care. 2003;41(11):1284–92.CrossRefPubMed
18.
Arroll B, Goodyear-Smith F, Crengle S, Gunn J, Kerse N, Fishman T, et al. Validation of PHQ-2 and PHQ-9 to screen for major depression in the primary care population. Ann Fam Med. 2010;8(4):348–53.CrossRefPubMedPubMedCentral
19.
Rong S, Hua Z, Hao Z, Qinyi S. The application value of PHQ-9 and PHQ-2 scales in the screening of depression in patients with malignant tumors. Elec J Clin Med Literature. 2019;6(A3):85–6.
20.
Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav. 1983;24(4):385–96.CrossRefPubMed
21.
Kang R. Research on the intervention effect of mindfulness-based stress reduction training on academic procrastination in nursing undergraduates. Anhui: Bengbu Medical College; 2020.
22.
Yaning J. A preliminary study on the reliability and validity of the simplified coping style scale. Chin J Clin Psychol. 1998;02:53–4.
23.
Jiaxuan M, Wanhua X, Chunhua Ma, Yeqing D, Lili D. Initial revision of Chinese version of parents, perception of uncertainty scale. China J Pract Nurs. 2013;29(28):46–50.
24.
Hong S, Hong G. Effect of informational support on uncertainty in illness among mastectomy patients. Chin J Nurs. 2004;04:7–9.
25.
Ren Ping Wu, Ying HG. Analysis on Factors that In fluence Parental Uncertainty in Illness among Children with Brain Tumors. Shanghai Nurs. 2021;21(06):28–33.
26.
Fang T, Shun L, Ting C, Li Z, Weilang D, Hong Y. The status of uncertainty in illness and its influencing factors among parents of children with Kawasaki disease complicated by coronary artery aneurysm. China J Pract Nurs. 2019;10:727–32.
27.
Yan Z, Zhengyi W, Xiulan W. The effectiveness of IIFAR-based information support on the disease uncertainty of preterm infants, fathers. China Clin Nursing. 2021;10(13):614–8.
28.
Tingting Zhu, Maojie Chen. Correlation analysis between disease uncertainty and negative psychology of parent in children with primary nephrotic syndrome. J Bengbu Med College. 2019;44(12):1710–3.
29.
Bin W, Chuanbo C, Yanjie Li. Disease uncertainty and its influencing factors of family members of young patients with breast cancer. General Nurs. 2017;15(10):1153–5.
30.
Kolemen AB, Akyuz E, Toprak A, Deveci E, Yesil G. Evaluation of the parents’ anxiety levels before and after the diagnosis of their child with a rare genetic disease: the necessity of psychological support. Orphanet J Rare Dis. 2021;16(1):402.CrossRefPubMedPubMedCentral
31.
Lina D, Tao L, Huijun Z. Uncertainty in illness and its influencing factors of family members of elder pafients with colostomy. Chin J Nurs. 2015;50(09):1047–51.
32.
Chahal N, Jelen A, Rush J, Manlhiot C, Boydell KM, Sananes R, et al. Kawasaki Disease With Coronary Artery Aneurysms: Psychosocial Impact on Parents and Children. J Pediatr Health Care. 2017;31(4):459–69.CrossRefPubMed
33.
Ho SH, Soong WJ, Wang KK. Stress and uncertainty in parents of children with tracheobronchial malacia and stenosis. Nurs Crit Care. 2019;24(6):399–406.CrossRefPubMed
34.
Zhirong H, Mei L, Zhengzhong L, Nini M, Dongmei X, Yujuan L,et al. Effect of running family empowerment program for parents of premature infants. J Nurs. 2021;21(36):37–40.
Metadata
Title
Current situation and influencing factors of disease uncertainty in parents of children with Sturge‒Weber syndrome: a retrospective study
Authors
Na Du
Yue Wu
Shanshan Xiong
Hong Ji
Lulu Huang
Wenyi Guo
Changjuan Zeng
Publication date
01-12-2023
Publisher
BioMed Central
Published in
BMC Pediatrics / Issue 1/2023
Electronic ISSN: 1471-2431
DOI
https://doi.org/10.1186/s12887-023-03857-x

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