How far are people with learning disabilities involved in funeral rites?

Abstract

Many referrals to specialist learning disability services follow bereavement and loss experiences. Research and clinical experience both suggest that people who have not been fully involved in funeral rituals have delayed and/or prolonged grief reactions. This study in a multicultural inner London borough examined local religious and cultural practices following bereavement of people with learning disabilities. Interviews were sought with funeral directors and representatives from six religious groups to build up a picture of local practice, resources and knowledge, particularly with regard to how people with learning disabilities are involved in the process. It was found that most of the local funeral directors had little direct experience of people with learning disabilities. The religious group representatives who were interviewed also spoke of a lack of involvement of people with learning disabilities. A pamphlet has been designed for funeral directors and religious groups to give to families or friends of people with learning disabilities who have been bereaved.

Attitudes to Bereavement and Intellectual Disabilities in an Irish Context

“…However, the high level of participation in grief rituals that the present authors have found may be, in part, because of the historical influence of the religious orders. Therefore, the concern expressed in other studies (Oswin 1991;Harper & Wadsworth 1993;Hollins & Esterhuyzen 1997;Raji et al 2003) at the low level of involvement in grief rituals may not apply to the same degree in the Irish context.…”

“…However, the preparation that a person with intellectual disabilities receives for the impending death of a care‐giving relative is often minimal. Frequently, information about a caregiver's illness is withheld, time or privacy to grieve denied and the individual excluded from funeral and other grieving rituals (Oswin 1991; Harper & Wadsworth 1993; Hollins & Esterhuyzen 1997; Raji et al. 2003).…”

How Adults With an Intellectual Disability Experience Bereavement and Grief: A Qualitative Exploration

“…Related to this is the reluctance to include PWID in the rituals of death, such as attending a funeral (Harper & Wadsworth, 1993;Hollins & Esterhuyzen, 1997;Oswin, 1991), despite evidence that this can be helpful in aiding understanding of death (Raji, Hollins, & Drinnan, 2003) and normalising the emotional experience of grief through observing the mourning of others (De Ranieri, Clements, & Henry, 2002). PWID also report that they find inclusion in rituals helpful (Gilrane-McGarry & Taggart, 2007) and supported involvement has been shown to reduce both repetitive questions about the whereabouts of the deceased, and the frequency and intensity of challenging behaviour (Sheldon, 1998).…”

How can mental health clinicians, working in intellectual disability services, meet the spiritual needs of their service users?

“…In all, two papers draw our attention to the importance of people with an intellectual disability being involved in funeral rites (Raji et al, 2003;Oswin, 1991). In Raji and Hollins' study, that comprised interviews with funeral directors and religious leaders, it is acknowledged that attendance at such services forms an important part of a normal grief reaction.…”