Caregivers’ perception of dignity in teenagers with autism spectrum disorder

Abstract

Introduction: Maintaining dignity is one of patients is one of the main ethical responsibilities of caregivers. However, in many cases, the dignity of patients, especially autistic teenagers is not maintained. The extent to which dignity needs are met for this group within the Iranian care system is difficult to determine as dignity is an abstract concept, and there are few related research studies reported. Objectives: The objective of this study is to find out caregivers perspectives on dignity in teenagers with autistic spectrum disorder. Research design: This study uses a qualitative research design. The data were collected through individual, semi-structured interviews and field notes developed during the interviews. In order to analyze the data, qualitative conventional content analysis was used. Participants and research context: In all, 16 professional caregivers for autistic teenagers working in public hospitals were recruited based on a targeted sampling method to reach data saturation from February 2016 to July 2017. Findings: The findings of this study were presented in three main themes, “privacy,” “respecting individual identity,” and “comprehensive support,” and 11 categories. Ethical consideration: This study’s protocol was approved by the Research Ethics Committee of medical universities located in Southeast of Iran and the required ethical principles were followed throughout. Discussion and conclusion: Based on the findings of this study from the perspective of caregivers, autistic teenagers need to be cared for and educated in a respectful environment where their privacy is maintained, their individual identities are respected, and they receive comprehensive familial, social, and financial support. These conditions would maintain the dignity of such teenagers and would result in appropriate behavioral outcomes. Therefore, it is suggested that a cultural, professional and institutional background in which all components of the autistic teenager’s dignity are protected and emphasized be provided.

A Study of Pre-hospital Emergency Care Personnel's Perception of Ethical Dilemmas in the Field: a qualitative study

“…In the present study, one of the major ethical dilemmas, as perceived by pre-hospital emergency care personnel, is maintaining respect for the physical, sexual, and psychological privacy of the injured. A few other studies report similar results: showing respect for the physical, sexual, and psychological privacy of patients, including sick and injured individuals who are attended to by prehospital emergency care personnel in the eld, is a major ethical dilemma in providing care to this group [24,27,28].…”

The Dignity of Burn Patients: A Qualitative Descriptive Study of Nurses and Caregivers

“…On the research team, the rst three authors had a Ph.D. in nursing and experience of educational-clinical practice in burns departments. The second and third authors had previously conducted research in the area of patient dignity [10,26]. The present study was conducted to plug the gap in the existing literature on the dignity of burn patients.…”

“…Preservation of dignity is one of the most important ethical responsibilities of caregivers [10]. Protection of dignity is associated with increased patient satisfaction and self-esteem, reduced length of hospital stay, patients' enhanced ability to cope with illness, and giving patients the sense that their lives are meaningful [8].…”

“…In recent years, many studies have addressed patients' and caregivers' perceptions of human dignity [12]. In the literature, the nature of dignity has been assessed in several groups of patients and caregivers, including patients with cardiovascular diseases [13][14], terminally ill patients [15][16], elderly patients [17][18], hospitalized adolescents [19], autistic teenagers [10], and cancer patients [20][21][22]. However, our understanding of the ethical aspects of caring for burn patients is limited [23] and, despite the serious psychological, social, cultural and religious consequences of burns, the dignity of burn patients has not been explored yet [2].…”

Development of Parental Competence Scale in Parents of Children with Autism

“…Moreover mothers of children with autism have a lower level of overall health, more stress, less self-efficacy and parental competence than the parents of children with typical development and those with other types of developmental disorders (Herring et al, 2006;Pisula, 2007;Yamada et al, 2007). Recent studies have sought to find ways to reduce these challenges and pressures on the family, especially the mothers of children with autism Mohammadi, Rakhshan, Molazem, Zareh, & Gillespie, 2018;Stuart & McGrew, 2009), However, an important starting point is to assess parental perceptions of their parenting role.…”