Prevalence of self-injurious behavior in people with intellectual development disorder

Self-injurious behavior (SIB) is a serious problem in people with intellectual development disorder (IDD). Such behaviors result in body lesions, elicit expression of negative emotions in caregivers, impair daily life interactions, and are associated with institutionalization and poorer quality of life. The frequency of SIB in people with IDD has not been studied in Brazil, and international studies suggest it is highly variable.¹-³ To assess the frequency of this behavior, patients from three institutions dedicated to the care of people with IDD were invited to participate in this study. Centro Nossa Senhora d’Assumpção (CENSA; n=107) is a specialized shelter for people with IDD. TheMadre Gertrudes (n=120) and Floresta (n=86) units of Fundação Dom Bosco are institutions focused on teaching and clinical care for this population.

For the purposes of this study, teachers, caregivers, and health professionals that had regular contact with the patients answered the Aberrant Behavior Checklist - Community (ABC-C).⁴ The tool takes into consideration the individual’s behavior in the preceding 4 weeks and consists of 58 items to be marked with scores on 0 to 3, where: 0 - it is not a problem in any way; 1 - the behavior is a problem, though light in severity; 2 - the problem is moderately serious; and 3 - the problem is severe. Patients that scored in any one of the items 2 (hurts himself on purpose), 50 (hurts himself deliberately), or 52 (uses physical violence towards himself) were considered positive for SIB.

Most participants with IDD were male (199 of 313; 63.58%). The mean (SD) age was 18.3 (12.4) years, ranging from 2 to 50 years. One-quarter of participants (n=76; 24.28%) exhibited SIB. Of those, 53 were male (69.74%) and 23 female (30.26%) (p=0.19). In CENSA, 25.23% of the patients exhibited SIB, whereas in the Madre Gertrudes and Floresta units of Fundação Dom Bosco, 20% and 29.06% of participants were self-aggressive. The frequency of SIB did not differ significantly between the institutions.

As this study shows, SIB is quite prevalent in people with IDD, both in specialized schools and at sheltering institutions. Our finding is in line with the study of Deb et al., who reported a 24% prevalence of SIB in IDD subjects living in the community.³ These behaviors appear to be equally frequent in male and female patients. However, the tool used takes into account the opinion of an observer. Even though observers had regular contact with the patients, they might overestimate or underestimate the real frequency of SIB.

We do not have data in Brazil about the sensitivity or specificity of ABC for SIB. The present study has additional limitations, as we did not investigate the frequency of SIB throughout the patient’s life, severity of IDD, or comorbid syndromes frequently associated with SIB,⁵ such as the Lesch-Nyhan and Cornelia de Lange syndromes. Nonetheless, we hope these data may stimulate future studies that aim to provide a better understanding and perception of SIB in people with IDD.

Acknowledgement

The authors are grateful to Censa, Fundação Dom Bosco (Madre Gertrudes and Floresta units), as well as to the parents and guardians of the patients and staff who made this study possible. The study was supported by Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq) and Fundação de Amparo à Pesquisa do Estado de Minas Gerais (FAPEMIG).

References

• ¹
  Emerson E, Kiernan C, Alborz A, Reeves D, Mason H, Swarbrick R, et al. The prevalence of challenging behaviors: a total population study. Res Dev Disabil. 2001;22:77–93.
• ²
  Holden B, Gitlesen JP. A total population study of challenging behaviour in the county of Hedmark, Norway: prevalence, and risk markers. Res Dev Disabil. 2006;27:456–65.
• ³
  Deb S, Thomas M, Bright C. Mental disorder in adults with intellectual disability. 2: the rate of behaviour disorders among a community-based population aged between 16 and 64 years. J Intellect Disabil Res. 2001;45:506–14.
• ⁴
  Brown EC, Aman MG, Havercamp SM. Factor analysis and norms for parent ratings on the Aberrant Behavior Checklist-Community for young people in special education. Res Dev Disabil. 2002;23:45–60.
• ⁵
  Oliver C, Murphy GH, Corbett JA. Self-injurious behaviour in people with mental handicap: a total population study. J Ment Defic Res. 1987;31:147–62.

Publication Dates

• Publication in this collection
  Sept 2015

History

• Received
  21 Mar 2015
• Accepted
  12 May 2015