“I carry her in my heart”: An exploration of the experience of bereavement for people with learning disability

Abstract

Accessible summary Four people with learning disability talked about what it was like when someone they cared about had died. They said that it was important they were included, but that it was hard. They said they carried on loving the person after they died and that they missed them. Abstract BackgroundBereavement is a universal experience, yet little research has explored the lived experience of bereavement for people with learning disability (PWLD). Materials and methodsFour PWLD were interviewed about their experience of bereavement. Data were analysed using interpretative phenomenological analysis. ResultsFour themes were identified: “Needing to know: Being included,” “Struggling to say: The emotional experience,” “Love after death: A continuing relationship” and “Missing their presence: The wider impact of death.” ConclusionsPWLD should have the opportunity to make informed choices about their level of involvement and to develop their emotional experience. PWLD should be supported to develop a continued bond with the deceased and the wider impact of their loss recognised.

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

“…Seventeen of the included studies (68%) reported levels of intellectual disabilities (see Table 1). Nine studies (53%) (Cithambaram et al, 2019, 2020; Cithambarm et al, 2021; Forrester‐Jones, 2013; Haider & Zaman, 2022; McEvoy et al, 2012; McEvoy et al, 2017; Thorp et al, 2018; Tuffrey‐Wijne et al, 2013) collected data from people with mild to moderate disabilities and all used interviews. Five studies (29%) (Chow et al, 2017; Rodríguez Herrero et al, 2015; Tuffrey‐Wijne et al, 2009; Tuffrey‐Wijne, Bernal, & Hollins, 2010; Tuffrey‐Wijne, Bernal, Hubert, et al, 2010) collected data from people with mild, moderate, and severe intellectual disabilities.…”

“…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).…”

Emerging from the shadows: Digital stories of self‐advocates with intellectual disabilities

“…The stories of self‐advocates often began with the sharing of difficult life experiences. Such life experiences are common for people with intellectual disabilities, who can be disabled by times of loneliness (Petroutsou et al, 2018), loss of meaningful relationships (Thorp et al, 2018), experiences of bullying (Olivier et al, 2020), abuse (Buhagiar & Azzopardi Lane, 2020), poor employment opportunities (Khayatzadeh‐Mahani et al, 2020), ill health (Anderson et al, 2013) and mental illness (Perera et al, 2020). The stories of self‐advocates were very much unified by a common theme of overcoming adversity and finding ways of being heard.…”

Using cognitive and behavioural strategies to support a man with mild–moderate learning disabilities navigate the dual process model of grief: A clinical case study

“…Thorp et al (2018) explored bereavement experiences of people with a learning disability, noting difficulties expressing emotions, and experiences of missing the deceased. Thorp et al (2018) concluded that emotions associated with grief are likely to be as overwhelming for people with a learning disability as in the general population, yet complicated by limitations in communicating and expressing emotional states. Given the barriers to how, when, and why people with learning disabilities might experience grief, there is a risk that they experience disenfranchised grief (Doka, 1999), where the grief expression is not in line with societal norms around death and grieving.…”