How do Adults with an Intellectual Disability Experience Bereavement and Grief? A Qualitative Exploration.
Robyn McRitchie, Karen McKenzie Ethel Quayle Margaret Harlin
This qualitative study explored the lived experiences of bereavement and grief in 13 adults with an intellectual disability (ID). Four themes which mediated individuals’ experience of bereavement and grief were identified: (1) Intra- and inter-personal experiences, (2) Core beliefs about life and death, (3) Level of inclusion, and (4) Continuing relationship with the deceased. The findings suggest that the participants experienced bereavement and grief in a manner similar to that of the general population, and endorse the role of clear and open communication, the facilitation of informed choice, and a culture of inclusion.
Keywords: Intellectual disability; bereavement; grief; coping
Limited research exists about the experiences of bereavement and grief in people with an intellectual disability (PWID), perhaps reflecting a tendency to shield this group from the realities of death (Clements, Focht-New, & Faulkner 2004). Models of grief developed in relation to the general population have moved from stage models, consisting of various predictable phases associated with tasks of grieving (e.g. Marris, 1992; Parkes, 1988; Worden, 1983) to those which take greater account of dynamic psychological processes, individual differences, and the systemic impact of bereavement (Dent, 2005; Kissane & Bloch, 1994). These models situate grief as a normal response to loss (Clegg & Lansdall-Welfare, 2003), however, PWID have in the past, been considered unable to experience feelings of grief following bereavement (Hollins & Kloeppel, 1989). This was influenced by early beliefs that they may be incapable of forming attachment relationships (Burlingham & Freud, 1942) or understanding the concept of death (Hughes & Noppe, 1985).
Research indicates that PWID can and do develop attachments, making them open to experiencing grief (e.g. Clegg & Lansdall-Welfare, 1995) and that while some aspects of grief, such as finality and non-functionality (McEvoy, 1989) and more abstract causes of death (Mayreddi & Narayan, 1993) are better understood by those with greater cognitive abilities, factors other than level of cognitive functioning have been found to influence level of understanding of death. This includes chronological age (Seltzer, 1989) and environmental factors (Kastenbaum & Costa, 1977), such as exposure to death.
It has also been suggested that PWID may process death in the same way as children, based on assumptions about similarities in developmental levels (Bihm & Elliott, 1982), despite a number of differences between the two: PWID tend to see death as an externally influenced process, while children, from as young as seven years of age, develop the understanding that death can be an inevitable internal biological process (McEvoy, 1989).
Harper and Wadsworth (1993) argue that level of conceptual understanding in no way predicts the ability of an individual to feel the emotional impact of bereavement or display emotional behaviour. As such, there is growing acknowledgement that PWID are not exempt from the experience of grief and that they exhibit behaviours that can be interpreted as manifestations of grief (e.g. Bonnell-Pascual et al., 1999; Hollins & Esterhuyzen, 1997). Dodd, Dowling, and Hollins (2005) conducted a systematic review and concluded that PWID, like others, may show emotional reactions to grief such as sadness, anxiety, and distress; behavioural manifestations such as increased crying, hyperactivity, inappropriate speech and challenging behaviour and mental health problems such as depression, mania and psychosis.
While PWID are not homogeneous, this research suggests that many grieve in a manner similar to the general population (Harper & Wadsworth, 1993; Oswin, 1991) and that cognitive impairment does not, in itself, prevent the experience of grief (Brelstaff, 1984). There is, however, also evidence that PWID are more likely to experience complications during the grieving period than the general population, due to factors such as secondary losses, communication problems, difficulties with tasks of grieving, and issues around inclusion.
Significant secondary losses for PWID include the loss of their primary carer and the related loss of their home (Hollins & Esterhuyzen, 1997; MacHale & Carey, 2002), as well as fewer visitors and daytime activities; changes in roommate and employment status and less money (Harper & Wadsworth, 1993).
A second complicating factor can be the reluctance to communicate with PWID about death and grief (Murray, McKenzie, & Quigley, 2000; Oswin, 1991) and some individuals may never be informed of a death (Oswin, 1991). Carers have reported feeling they lack the skills required for tackling the subject of grief or, having had appropriate training, feeling a lack of confidence in their ability to put such training into practice (Dodd, McEvoy, et al., 2005; Dowling, Hubert, White, & Hollins, 2006; Murray et al., 2000; Watters, McKenzie, & Wright,
2011). They have also reported believing that if they broach the subject of grief the individual will require a level of support that exceeds that which they feel able to provide (MacHale, McEvoy, & Tierney, 2009). All of these factors may lead to PWID experiencing disenfranchised grief. This refers to situations where individuals do not receive acknowledgement or support for their loss or are denied the opportunity to publicly mourn (Doka, 2002).
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). Others have found that, if managed poorly, ritual involvement can result in more problematic grief, thought to be due to insufficient preparation beforehand or explanation and communication following (Dodd et al., 2008). This is reiterated by Clegg and Lansdall-Welfare (2003) who stress that involvement alone is not sufficient and that, for participation to be beneficial, a generalised culture of emotional support is required.
In summary, research suggests that PWID can and do experience bereavement and grief, and that many have grief reactions which are consistent with those of the general population. However they may experience additional challenges associated with grief due to factors such as secondary losses, lack of communication about death by others and limited inclusion in the rituals surrounding death. Despite the growing body of research in this area, much of it has been indirect, based on family or carer reports rather than on the experiences of
PWID (Booth & Booth, 1994). Consistent with the focus on the inclusion of PWID in all aspects of society, the present study aims to explore the lived experience of bereavement and grief for a group of individuals with ID.
Design: The study adopted a qualitative methodology, using interpretative phenomenological analysis (IPA) of direct semi-structured interviews. IPA is concerned with investigating how people make sense of major life experiences (Smith & Osborn, 2008) and has previously been used effectively to access the views of PWID (e.g. Cookson & Dickson, 2010).
Ethical issues and approval: Ethical approval was granted by the educational establishment of the second author and the local National Health Service (NHS) Research and Development Department. Given the potential vulnerability of PWID, a number of ethical issues were considered. To reduce potential acquiescence, the participants only met the researcher once they had already expressed their interest in participating via a key worker. To ensure informed consent, all participants received an accessible information sheet describing the full implications of being involved in the research, including that the topic could be upsetting. Informed consent was obtained anew for each interview session. The emotive and possibly distressing nature of the subject matter covered in the interviews was considered in the context of the need to be inclusive and give PWID the opportunity to express their perspective. In this context and following McCarthy (1998), it was concluded that the willingness of the PWID to participate and share their experience transcended any presumed negative effects. In addition, it was made clear that if participants became
distressed, the first author would stop the interview and offer support. To ensure confidentiality, at the point of transcription all identifying data was removed from the digitally recorded interviews and a pseudonym was allocated to each participant. Following transcription, the original recordings were destroyed.
A purposive sampling approach was used. Participants were included if they were aged over 18, able to give informed consent, had the cognitive and communication abilities to participate and had experience of the death of a close relative, friend or staff member within the last 3 years. Participants were excluded if participation was deemed to be detrimental, for example if the person was very recently bereaved or showed extreme emotional distress.
Participants were recruited through day service providers in Scotland. Service managers and key-workers were provided with information about the study and asked to identify possible participants and to send them an accessible invitation letter inviting them, if interested in participating, to meet with the first author to allow her to discuss the study, answer questions and obtain informed consent. A further interview was then arranged to conduct the research, at a time and location of the participant’s choice. A semi-structured interview format was chosen as studies have shown that PWID can benefit from some level of structure when being interviewed (Gilbert, 2004). Interviews were recorded using a digital voice recorder and subsequently transcribed, removing all identifiable data.
The first author read each transcript a number of times to familiarise herself with the data. In line with IPA recommendations (e.g. Smith & Eatough, 2007), she took initial notes which informed the transcript coding process. She used the NVivo9 software to code transcripts according to identified units of meaning. These were categorised as emergent themes which were then considered as a whole and organised into interconnected hierarchies. Each interview was analysed individually, before comparative analysis was carried out between interviews,
allowing an overall group analysis, while still maintaining the value and importance of each individual participant’s experience.
The data analysis process was assessed using the quality criteria proposed by Yardley (2008): sensitivity to context; commitment and rigour; transparency and coherence; and impact and importance.
Sensitivity to the theoretical and socio-cultural context was addressed by the first author carrying out a review of relevant literature and reflecting on the power dynamics within the research relationship and how it might impact the study’s findings. The literature review confirmed the potential impact and importance of the topic and provided a strong argument for the need for inclusive research which could contribute to the knowledge base and help inform practice. While the previous research informed the study design and area of interest, the authors did not adopt a specific theoretical position based on it when conducting data analysis.
In order to evidence commitment and rigour, purposive sampling was used to ensure the sample was appropriate, suitable and homogenous. Triangulation of data was used to compare and refine interpretation of individual participant accounts.
Transparency and coherence were addressed by the first author ensuring clear and unambiguous documentation at all stages of the research process, including a written reflection on any internal or external influences, which may have affected either the collection or interpretation of data. Independent colleagues regularly reviewed the research process and sample interview transcripts and agreed the themes and subthemes.