Parenting stress and impact of illness in parents of children with coeliac disease

Maria Stella Epifanio, Vitalba Genna, Maria Grazia Vitello, Michele Roccella, Sabina La Grutta, Maria Stella Epifanio, Vitalba Genna, Maria Grazia Vitello, Michele Roccella, Sabina La Grutta

Abstract

Coeliac disease (CD) is a chronic disease which could stress patients and their family. Although, poor attention has been paid to the quality of life in CD children and to the functioning of families with CD children. The study aims to evaluate the parenting perception of the CD impact and the parenting distress level. A group of 74 parents of CD children compiled the Impact Childhood Illness Scale and the Parenting Stress Index which is also compiled by 74 parents of health children. The assessment does not reveal a significant impact of CD on patient's personal life although some critical areas emerged. Results evidenced an higher level of parenting stress in parents of CD children than parents of healthy children. CD, if suitably managed, has not a critical impact on parenting perception. Although, CD certainly put parents through an higher risk of a distress related to parenting role than parents with health children. A early identification of parenting distress in a pediatric chronic illness could facilitate the adjustment to pathology.

Keywords: chronic disease; coeliac disease; impact childhood illness; parenting stress.

Conflict of interest statement

Conflict of interests: the authors declare no potential conflict of interests.

References

    1. Fasano A, Catassi C. Current approaches to diagnosis and treatment of celiac disease: an evolving spectrum. Gastroenterology 2001;120:636-51
    1. Mustalahti K, Catassi C, Reunanen A, et al. Coeliac EU Cluster, Project Epidemiology. The prevalence of celiac disease in Europe: results of a centralized, international mass screening project. Ann Med 2010;42:587-95
    1. Bottaro G, Cataldo F, Rotolo N, et al. The clinical pattern of subclinical/silent celiac disease: an analysis of 1026 consecutive cases. Am J Gastroenterol 1999;94:691-6
    1. Hadjivassilou M, Gibson A, Davies-Jones GA, et al. Associated with the cultivation of wheat. J Pediatr Gastroenterol Nutr 1997;24:S14-6
    1. Accomando S, Albino C. La malattia celiaca: nuove implicazioni in una antica condizione. Celiac disease: new implications in an old condition. Capsula Eburnea 2006;2:1-5
    1. Husby S, Koletzko S, Korponay-Szabò IR, et al. European Society for Pediatric Gastroenterology, Hepatology, and Nutrition guidelines for the diagnosis of coeliac disease. J Pediatr Gastroenterol Nutr 2012;54:136-60
    1. Garampazzi A, Rapa A, Mura S, et al. The clinical pattern of celiac disease is still changing? J Pediatr Gastroenterol Nutr 2007;45:611-4
    1. Lucarelli L. Disturbi dell’alimentazione. : Ammaniti M, Manuale di psicopatologia dell’infanzia. Milano: Raffaello Cortina Editore; 2001
    1. Ammaniti M, Manuale di psicopatologia dell’infanzia. Milano: Raffaello Cortina Editore; 2001
    1. Lee A, Newman JM. Celiac diet: its impact on quality of life. J Am Diet Assoc 2003;103:1533-5
    1. Nachman F, Planzer del Campo M, González A, et al. Long-term deterioration of quality of life in adult patients with celiac disease is associated with treatment noncompliance. Dig Liver Dis 2010;42:685-91
    1. Kolsteren MM, Koopman HM, Schalekamp G, Mearin ML. Health-related quality of life in children with celiac disease. J Pediatr 2001;138:593-5
    1. Kurppa K, Collin P, Mäki M, Kaukinen K. Celiac disease and health-related quality of life. Expert Rev Gastroenterol Hepatol 2011;5:83-90
    1. Chmielewska A, Szajewska H, Shamir R. Celiac disease: prevention strategies through early infant nutrition world. Rev Nutr Diet 2013;108:91-7
    1. Ripamonti C, Clerici CA. Psicologia e salute. Introduzione alla psicologia clinica in ambiente sanitario. Bologna: Il Mulino; 2008
    1. Cimma IG, Furno V, Parziale F, et al. Il progetto vivere la celiachia. Una ricerca sul vissuto emotivo di chi vive in un mondo gluten-free. Available from: Accessed on: September 2013
    1. Quittner AL, Di Girolamo AM, Michel M, Eigen H. Parental response to cystic fibrosis: a contextual analysis of the diagnosis phase. J Pediatr Psychol 1992;17:683-704
    1. Krulik T, Turner-Henson A, Kanematsu Y, et al. Parenting stress and mothers of young children with chronic illness: a cross-cultural study. J Pediatr Nurs 1999;14:130-40
    1. Perricone G, Guerra MP, Cruz O, et al. Maternal coping strategies in response to a child’s chronic and oncological disease: a cross-cultural study in Italy and Portugal. Pediatr Rep 2013;5:e11
    1. Scarzello D. La famiglia del bambino malato cronico. Età Evolutiva 2002;71:106-17
    1. Hanson MJ, Hanline MF. Parenting a child with a disability: a longitudinal study of parental stress and adaptation. J Early Interv 1990;14:234-48
    1. Krauss MW. Child-related and parenting stress: similarities and differences between mothers and fathers of children with disabilities. Am J Ment Retard 1993;97:393-404
    1. Hadadian A. Stress and social support in fathers and mothers of young children with and without disabilities. Early Educ Dev 1994;5:226-35
    1. Hoare P, Russell M. The quality of life of children with chronic epilepsy and their families: preliminary findings with a new assessment measure. Dev Med Child Neurol 1995;37:689-96
    1. Abidin RR. Introduction to the special issue: the stresses of parenting. J Clin Child Psychol 1990;19:298-301
    1. Guarino A, Di Blasio P, D’Alessio M, et al. Parent stress index di Richard Abidin (1990). Firenze: Giunti O.S.; 2008

Source: PubMed

Patrocinadores y Colaboradores

Condiciones médicas

Intervenciones de drogas

3
Suscribir