Bereavement among Adolescents with Intellectual Disability: A Qualitative Study

Abstract

The current study was conducted to explore the bereavement (experienced loss of a loved one through death within time frame of 0–3 years span). Seven adolescents (10–19 years old) with intellectual disability were included in the study. Semi-structured interviews were conducted through interview guide which was prepared with the help of Piaget’s theory of cognitive development concept related to death. Data was analyzed with content analysis and six major themes were derived, that is, meaning of death, death rituals, religious concepts related to death, reasons of death, grieving perception, and coping with grief. Mostly, concepts were explained under the light of religious preaching and their introjection in the lives of adolescents with intellectual disability. Current study helped in exploration of experiential phenomenon of loss in adolescents with intellectual disability.

Qualitative methodological approaches involving participants with intellectual disabilities: Scoping review of literature exploring death and dying

“…Where reported (10/17, 59%), duration of the interviews ranged from 15 to 90 min (Cithambaram et al, 2020; Cithambarm et al, 2021; Haider & Zaman, 2022; McEvoy et al, 2012; McEvoy et al, 2017; McKenzie et al, 2017; Rodríguez Herrero et al, 2015; Ryan et al, 2012; Thorp et al, 2018; Voss et al, 2020). Only two studies reported interviews taking place over multiple days (Haider & Zaman, 2022; McRitchie et al, 2014).…”

“…Where reported (10/17, 59%), duration of the interviews ranged from 15 to 90 min (Cithambaram et al, 2020; Cithambarm et al, 2021; Haider & Zaman, 2022; McEvoy et al, 2012; McEvoy et al, 2017; McKenzie et al, 2017; Rodríguez Herrero et al, 2015; Ryan et al, 2012; Thorp et al, 2018; Voss et al, 2020). Only two studies reported interviews taking place over multiple days (Haider & Zaman, 2022; McRitchie et al, 2014). Settings of data collection was reported in eight of the 16 publications (50%) (Butler et al, 2012; Haider & Zaman, 2022; McEvoy et al, 2012; McEvoy et al, 2017; Rodríguez Herrero et al, 2015; Ryan et al, 2012; Thorp et al, 2018; Voss et al, 2020) When specified, the settings of data collection were characterised as being “comfortable” (Thorp et al, 2018) or “quiet” (McEvoy et al, 2012; McEvoy et al, 2017; Rodríguez Herrero et al, 2015).…”

“…The choice of setting was explained in two studies (Ryan et al, 2012; Voss et al, 2020) and were reported as being chosen by the participants. Taking place during the COVID‐19 pandemic, Haider and Zaman's (2022) study was conducted in separate rooms. Some studies (Haider & Zaman, 2022; Rodríguez Herrero et al, 2015; Thorp et al, 2018) took place in the institutions that participated in the study.…”

Understanding the Concepts of Death in Bereaved Teens with Intellectual Disabilities: An Examination of Measurement Tools

“…Because teens with ID demonstrate variation in adaptive and cognitive abilities, proxy reporting by utilizing the measurement tools with the surviving parent/guardian or caregiver of the teen could alternatively be used, even at the risk of secondary reporting not fully capturing the experiences of the teens. In the limited prior research on teens with ID and their grief experiences, one study interviewed teens with ID directly (Haider & Zaman, 2022), but the two other published studies on children with ID have worked with professionals such as teachers or psychologists (Ducy & Stough, 2018; McClean & Guerin, 2019).…”

“…Varying levels of support may be needed for individuals with ID in navigating daily functioning and novel situations, and in understanding and incorporating new or complex information and skills (Gjertsen, 2019; Maulik et al, 2011). Given the additional physical and emotional transitions from adolescence to young adulthood, and developing cognitive maturity, teens with ID may have particular vulnerability in relation to significant life changes (Haider & Zaman, 2022).…”