‘When Your Child Dies You Don’t Belong in That World Any More’– Experiences of Mothers Whose Child with an Intellectual Disability has Died

Abstract

Background Individuals with intellectual disability are at higher risk of premature death compared with individuals without intellectual disability, and therefore parents of people with intellectual disability are more likely to outlive their children. However, there has been relatively little research investigating the bereavement experiences of parents of deceased children with intellectual disability. Method Semi‐structured interviews were used to explore the experiences of nine mothers whose child with intellectual disability had died. The transcripts were analysed qualitatively using Interpretative Phenomenological Analysis. Results Five themes emerged from the analysis: loss, benefit finding, coping, sources of support and medical relationships. An analysis of the accounts indicated similarities and differences between the experiences of the mothers. In particular, continuing in their caring role by working within the world of intellectual disability following the death of their child was important to all of the mothers. Support from similarly bereaved parents was the most useful source of support, although it was not always readily accessible. Conclusions Implications for theory and practice are described including suggestions that service providers should aim to maintain links with families after the death of their child, a parent‐to‐parent programme that enables parents to contact others in a similar situation might be beneficial, and further research into the functions of coping strategies and supports in loss would be worthwhile.

What aspects of post-traumatic growth are experienced by bereaved parents? A systematic review

“…Resilience scale.Parappully et al (2002)QualitativeUSACaucasian (12)Hispanic (2)African American(1)Russian (1)16Female (13)Male (3)Other (12)Divorced (4)MurderRange: 7–41 yearsMedian: 21 yearsRange = 15 months–23yearsMedian = 6 yearsSemi-structured interviews.Polatinsky and Esprey (2000)QuantativeSouth AfricaCaucasian (100%)67Female (49)Male (18)Married (73%)Divorced (13%)Single (4%)Widowed (10%)Motor accidents (38%)Suicide (42%)Homicide (11%)Illness (5%)Other (4%)Not reportedRange = 6months–8 yearsContextual information about the death. PTGIReilly et al (2008)QualitativeUKEnglish (7)Scottish (1)Welsh (1)9 FemaleNot reportedIllness (8)Feeding complication (1)Range = 23months–18 years M =  10.64 SD  = 2.79 M =  4.2 years. Range = 10 months–10 years SD  = 2.79Semi-structured interviewsRiley et al (2007)QuantativeUSACaucasian (92%)35 FemaleMarried (90%)Accident (58%)Neonatal death (12.5%) M =  12 years M =  15.7 months SD  = 8.4LOT-R. Dispositional version of the COPE.…”

“…In qualitative studies, with the exception of Brabant et al (1997), the procedures for data analysis were clearly described. However, apart from the study by Reilly, Huws, Hastings, and Vaughan (2008), qualitative papers did not comment on their consideration of researchers’ influence, either during the data collection or the analysis; this is important as biases may not be acknowledged. Three mixed methods studies were included, two of which were case studies (e.g.…”

“…Reilly et al’s (2008) participants reported many grief symptoms, including anger and despair after their child’s death. They concluded that, although the grief persisted, it became easier to manage over time.…”

“…Only one study conducted outside of America mentions religion. It reported that women who already had religion in their lives, questioned, but did not change, their beliefs; women who did not have religious faith prior to the death of their child, did not turn to religion (Reilly et al, 2008). …”

“…Furthermore, some mothers reflected on how they felt they were coping differently to their husbands, which made emotion-focused activities difficult (e.g. looking at photographs) (Reilly et al, 2008). However, despite mothers demonstrating higher mean scores on four out of five of the PTGI domains, Polatinsky and Esprey (2000) suggested their study had insufficient evidence of gender differences.…”