OMEGA, Vol. 69(2) 117-135, 2014

EXPLORING THE BEREAVEMENT EXPERIENCES OF OLDER WOMEN WITH INTELLECTUAL DISABILITIES IN LONG-TERM RESIDENTIAL CARE: A STAFF PERSPECTIVE*

NANCY MORGAN Irish Hospice Foundation, Dublin, Ireland JOHN MCEVOY Dundalk Institute of Technology, Ireland

ABSTRACT

This study explores the impact of bereavement on a group of older women with intellectual disabilities who have lived in a congregated residential setting for most of their lives. Using Interpretative Phenomenological Analysis, staffs’ experiences of supporting individuals with varying degrees of intellectual disabilities through grief are examined. Data analysis revealed five super-ordinate themes. The findings indicate that recognizing grief in this group is complex, and secondary loss frequent. Carers and relatives may overprotect and disenfranchise their grief which is often expressed through changes in behavior and there may be a time lag before these expressions of grief are noticed. Religious practice and rituals were found to be helpful in coping and adjusting to loss. Carers are important advocates for supporting service users who are grieving, thus information on how grief is processed in elderly individuals with intellectual disabilities has implications for training and educating staff in supporting vulnerable adults.

*This research was conducted by way of partial fulfillment for the M.Sc. in Bereavement Studies, Irish Hospice Foundation, and The Royal College of Surgeons in Ireland. 117 Ó 2014, Baywood Publishing Co., Inc. doi: http://dx.doi.org/10.2190/OM.69.2.b http://baywood.com

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Coping with bereavement is a significant and challenging feature of the ageing process. Within the Republic of Ireland, the number of older persons with intellectual disabilities (ID) is steadily growing, with the majority transferring to congregated residential settings as they age (Health Service Executive, 2011; Kelly, Craig, & Kelly, 2010; McCarron, Swinburne, Burke, McGlinchey, Mulryan, Andrews, et al., 2011; Mulvaney, Barron, & McConkey, 2007). Historically there has been a reluctance to accept that individuals with ID grieve (Blackman, 2003; Dodd & Guerin, 2009; Oswin, 1991; Read, 2001). However, this has been challenged by recent studies indicating that individuals with ID experience the same range and intensity of grief reactions as the typical population (Dodd & Guerin, 2009; Gilrane-McGarry & Taggart, 2007; Harper & Wadsworth, 1993; Read & Elliott, 2007). Indeed, for some adults with ID, coping with death may present considerable behavioral and mental health challenges (Bonell-Pascual, Huline-Dickens, Hollins, Esterhuyzen, Sedgwick, Abdelnoor, et al., 1999; Dodd, Guerin, McEvoy, Buckley, Tyrell, & Hillery, 2008; Hollins & Esterhuyzen, 1997; MacHale & Carey, 2002). Despite the growing literature on the impact of death on people with ID (Clute, 2010; Dodd & Guerin, 2009), relatively little is known about the bereavement experiences of the growing cohort of older service users. Moreover, for older adults the grief trajectory may be further complicated by the infirmities associated with old age (Cooper, 1999; McCallion & McCarron, 2004). Thus, increased knowledge of the bereavement experiences of older adults information is important as services come under increasing pressure to design care to meet the specific needs of older persons with ID (Fahey-McCarthy, McCarron, Connaire, & McCallion, 2009) and will enhance staff training (Bennett, 2003; Fahey-McCarthy et al., 2009; McEvoy, Guerin, Dodd, & Hiller, 2010; Reynolds, Guerin, McEvoy, & Dodd, 2008). Older individuals who live in congregated residential settings are faced with unique challenges when grieving, such as exclusion and disenfranchised grief (Doka, 2002). Families may seek to shield and protect their relative from the emotional trauma of grief (Oswin, 1991; Raji, Hollins, & Drinnan, 2003). Paid carers constitute an important source of bereavement support for grieving, older individuals (Blackman, 2003; MacHale, McEvoy, & Tierney, 2009; McCarron et al., 2011; McEvoy et al., 2010). However, delivery of this support may be inconsistent because of operational and personal demands on staff, and high staff turnover may result in additional communication and attachment issues (Bennett, 2003; Dowling, Hubert, White & Hollins, 2006; McEvoy et al., 2010). Living in a congregated setting presents limited opportunities for older bereaved individuals to observe how the general public cope with loss or to seek alternative or independent community based forms of support (Dowling et al., 2006; Gilrane-McGarry & Taggart, 2007; Read, 2001; Read & PapakostaHarvey, 2004). Neimeyer and Hogan (2001) suggest that qualitative methods are more suited to deepening our understanding of bereavement and grief issues. Therefore,

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Interpretative Phenomenological Analysis (IPA) was deemed the most appropriate research approach for the present study. IPA, with its roots in phenomenology and hermeneutics, is a qualitative, experiential research approach aimed at eliciting an in-depth description of a particular human experience (Smith, Flowers, & Larkin, 2009). The researcher’s responsibility is to interpret participants’ experiences and uncover central themes so as to make sense of the participant’s personal world (Smith, 2004; Smith, Jarman, & Osborn,1999). A distinctive feature of the present study is the focus on individuals who have spent almost their entire lives living away from the community, having been placed in care 50 to 60 years ago when ID was poorly understood, considered burdensome, and a stigma for the family. The objective was to gain insights into staff perceptions of how bereavement and loss is experienced by older female service users with ID. Specifically, the goals were: 1. to investigate how staff perceive and understand the impact of bereavement on older adults in residential care; and 2. to understand the responses and coping resources older persons with ID utilize to deal with their grief. METHOD Participants The study was conducted in a center situated in a large city on the east coast of Ireland providing residential, nursing, and day services for 150 older women aged between 55 and 90 years with varying degrees of ID and physical, psychological, and palliative care needs. A purposeful sample of 10 female staff ranging in age from 28 to 56 years were interviewed. Study participants had worked in the center for between 2 and 25 years. Their identities are protected by the use of pseudonyms. Procedure Semi-structured interviews, lasting approximately 1 hour, were conducted by the first author over a number of days in a quiet room in the center. The first author is an experienced nurse responsible for pastoral care and bereavement support. She has received training in working with bereaved individuals and had access to clinical supervision throughout the study. The questions in the interview schedule were open-ended and phrased in a conversational manner so as to prompt participants to share their perceptions of the bereavement and loss experiences of the women in their care. Questions focused on manifestations of grief, coping strategies, attendance at funerals and religious rituals, and information giving. A chaplain and additional supports were available to participants, post interview, if required. The study was approved by the local research ethics board.

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RESULTS Interviews were audio-taped and transcribed verbatim (Barriball & While, 1994). The transcripts were read and re-read several times in order to establish an overall sense of understanding. Codes were developed from the transcripts and then ordered, clustered in a form which identified patterns which were eventually organized into emerging themes. Five super-ordinate themes were identified, each of which contained a number of sub-themes representing participants shared understanding (Fade, 2004). Sub-themes relating to the overarching superordinate themes were then linked to appropriate sections of the data. Because data analysis in IPA is subjective, formal inter-rater reliability was not possible (Smith & Osborn, 2003). However, the second author conducted regular credibility checks to ensure coherency and representativeness of themes (Elliott, Fischer, & Rennie, 1999). In addition, the first author consulted with each participant to ensure accurate interpretation (Creswell, 2009). Personal presuppositions were kept to the fore through the use of comprehensive field notes consulted throughout the analysis, thus minimizing potential biases (Malterud, 2001). The five superordinate themes and their emergent sub-themes are described in more detail below. The Complexity of Grief The first super-ordinate theme encapsulates participants trying to make sense of the impact of death on residents. Among the sub themes to emerge were: (i) the frequency of loss, (ii) the cumulative effects of grief, (iii) difficulties in recognizing grief, and (iv) residents’ behavioral responses to grief. Staff reported that residents frequently experienced bereavement and that, for many, a new death was often the catalyst for resurrecting unresolved losses from the distant past. Death also heralded other tangible losses such as the absence of the person who understood them best, or the loss of visits to their family home. The high frequency of loss and cumulative effect of grief are well illustrated by one participant who remarked: At this stage of their lives they are suffering a huge amount of bereavements, so it has a kind of knock on effect from the past, there is also a loss of a normal way of life, losing their home and parents is really hard, it becomes very complex. (Joyce)

Because impairments in communication are such a challenge for the residents and staff alike, participants reported that they relied primarily on residents behavior as “the language of grief.” Indeed, all of the participants spoke about the challenge of assessing grief and reported that many residents expressed their grief through a variety of behaviors including aggression, One of our women would start swearing, scratching others and acting out in uncharacteristic ways. She used always be very quiet and reserved. This

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might happen after a peer member died or when she had a visit from family member who came once or twice a year. (Grace)

stealing, and psychosomatic disorders, One woman would take to the bed and point to her forehead as if she had pain, the doctor would examine her and find nothing wrong. She would lash out at peers and steal their stuff also. This could happen a couple of weeks after a death and now we watch out for it. (Audrey)

However, not all behavioral responses to bereavement were viewed by staff as maladaptive. For example, another participant described how one “unusual” behavior facilitated adjustment to loss: One of the women’s brothers died suddenly and she was very upset but appeared to get over it. After a few months, she started to turn into the wall and have conversations with an imaginary friend in the corner. For a while, staff thought this was a hallucinatory event and symptomatic of a psychiatric problem. We then noticed she was using her brother’s name and it became clear this was her method of grieving. (Ellen)

The challenges inherent in recognizing grieving behavior is further acknowledged by one member of staff who remarked on her own difficulties in assessing the impact of grief on each individual: You would watch out because you never know what way grief manifests itself; one lady would cry ‘buckets’ and tell everyone how sad she was and the next thing she seems to be over it quickly but it could all start up again later. (Josie)

Clearly, staff struggle with the complexities of grief and with how best to offer support, as illustrated in the following accounts: Sometimes we go to the person who is crying the loudest and then there is the quiet person and she never complains and we don’t know what is going on for her. (Audrey) We think what works for us works for them too but not always, what do they think? We don’t know, we are only assuming and giving what is going on in our heads but it may not be in theirs! (Grace)

Emotional Responses to Death The second theme dealt with participants’ perceptions of residents’ emotional responses to grief and included the emerging themes of: (i) crying as an indicator of grieving, (ii) masking emotional pain, and (iii) delay in expressing grief. When discussing the grief responses of the residents, many participants were conscious of residents’ lack of emotional vocabulary and the associated risk of an inability to understand and express feelings of loss:

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They cannot tell you how they are feeling, I think a bit of loving goes a long way, well that was what I needed when I was grieving my mother. (Joyce)

Many of the participants considered the ability to express emotions through crying as a positive method of coping and enabling a release from pent up feelings as well as a way of eliciting sympathy from others: Pauline saw herself on a video and thought it was her dead sister. Indeed there was a close resemblance. She kept saying “that is my sister before she died,” her tears came, we thought she would never stop: it was her first time crying. We found it helped her a lot and we were better able to give her support and comfort. (Tess)

Participants also provided evidence of their own positive learning and evolution in support practices resulting from reflective practice. For instance, one participant remarked: In the past we would say “don’t be crying there is no need for it. Your Mam would not want you to be upset.” Now we encourage people to cry if they are able. (Madge)

Similarly, staff stated that expressing one’s own grief publicly alongside the bereaved person seemed to legitimize the residents’ grief and normalize their emotional response. For example, one of the participants describes her experience of integrating her personal sense of loss with that of the residents as follows: When one of our clients die we can be upset ourselves as we often know the person for a long time. Recently I got very upset when I heard one of the women had died. Her peer saw me crying and came to me and started to cry too. On reflection I thought my crying was a good thing and gave credence to her emotions even if she was mimicking my behavior it was right for her. (Audrey)

Participants noted that many bereaved residents were inclined to report that they were well, and viewed such a response as a defense mechanism masking emotional pain, or as simply acquiescence to conform and to please others. One participant was of the opinion that: One woman had multiple losses in recent years and would seem to be fine and kept telling us she was better and all of a sudden she had an episode where she became extremely upset and withdrawn. We realized that she was covering up and agreeing with everything. We should have given her more attention. (Julie)

Some participants commented on residents’ resilience and speculated on an in-built coping mechanism which acted as a buffer against the pain of loss as a result of having to deal with multiple losses and rejection throughout their lives: Some clients hide their loss and build a wall around themselves. I don’t think I could deal with deep losses like rejection. I often find that the women are

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reluctant to talk about things that happened in the past. These things were not dealt with then. (Grace)

However, there was also occasions when, although residents appeared to be coping adequately, their reluctance to explore loss-related emotions was viewed negatively by some staff. For example: You would notice some people put their best foot forward and tend to be private about their feelings and keep things to themselves. It’s like they have lots of “emotional boxes” which are closed and they are afraid to open them or let any one else do so. (Ellen)

And staff members frequently observed a delay in residents reacting overtly to the loss of a loved one: I have noticed that a couple of months could pass before grief would show up for some people, they might start talking about a deceased peer and saying things like “. . . did not like her anyway. (Ellen)

Some participants were also aware that delayed grief responses could inadvertently be attributed to causes other than grief by colleagues: At the same time they might be gone off their food or refusing to go to activities. The trouble is staff might think there was another cause to these symptoms. (Ellen)

Overprotection and Shielding from Grief The third theme reflected the fact that many of the residents were reported to have had a life history of being excluded by family. In addition, two sub-themes were identified: (i) the importance of inclusion, and (ii) frustration in dealing with families. All participants were in agreement that the inclusion of residents in the mourning process, such as viewing the body, attending the funeral, and visiting the cemetery, was central to healthy adjustment. Similarly, preparation for the anticipated death of a family member or peer was considered essential, provided this was conducted sensitively by a family or staff member who knew the individual well. Indeed, some participants indicated that residents should be informed about terminal illness even where there may be limited ability to comprehend death and the dying process: I think they should be told even if they don’t understand what is happening. They will cope better when they are not looking for them to come back. Sure they will miss the person; anyway we have to find ways of telling them gently. (Joyce)

Many of the participants expressed their frustration over difficulties they encountered with residents’ families, some of whom wished to exclude their relative from hospital visits, particularly at the time of death. In most of the interviews, participants reported that the reasons for exclusion were varied and often

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based on a well intentioned wish to protect the resident from the pain of grief. However, the challenges and frustrations experienced by many of the participants in their dealings with families are well illustrated by the following quote: We all were taken aback when one family member told one of the clients that her brother had died the previous month. That was the first any of us heard about it. The conversation went something like this: “. . . sure you are not upset you never really knew him anyway he was bad at visiting you. (Tess)

Overprotection and exclusion were also seen as reflecting the families’ own sense of stigma around intellectual disability. For instance, several participants believed that some of the reasons for not including residents in end-of-life issues were based on the family’s concerns about their image and status within their own community: I think some of it is protective, also it is an image or shame thing going back to the olden days. People worried that they would not do well in the job or marriage stakes if it was known they had a sibling with an intellectual disability. (Ellen)

However, there was some indication that family attitudes are changing - particularly among younger parents and siblings: I notice a difference in the families of the younger people who come here for respite or palliative care, they are keen to involve the person in preparation for dying. The culture of the past glossed over everything; families now see involving everyone as the right thing to do. (Julie)

Coping The fourth theme included: (i) practical interventions and coping strategies, and (ii) religious coping. Most of the participants considered a range of flexible creative approaches to promote coping strategies; the most obvious intervention was simply talking: I think your own experiences of loss make you more comfortable to sit and talk about it and be prepared to listen without getting upset. (Audrey)

Though others disagreed: I often find that the women are reluctant to talk about things . . . doing reminiscence only made things worse so we often abandon it. We find keeping to the usual daily routine often helps the person cope better. (Grace)

However, the majority of participants suggested that a mix of gentle discussion coupled with diversionary activities delivered the best therapeutic effect: It is great now that the ladies are doing life story books with the social worker as it is a chance to talk about their deceased family. We found it great for one woman who is not great verbally, . . . doing nothing is the worst thing. (Tess)

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Most participants in the present study believed that the residents had some limited understanding of death concepts, such as the irreversibility and nonfunctionality, possibly as a result of having witnessed their family and peers die. However, this was seen as dependent on cognitive ability. One participant used bi-weekly sessions in the greenhouse as an opportunity to talk about loss and relate it to the life cycle: One of the ladies loves looking after plants and we showed her how flowers grow and eventually die—just like all us, you have to make sure you go through the different seasons with this one as it would not be good to stop before the flower dies, she showed great interest and kept asking to go back to the tunnel. (Ellen)

There was general agreement that euphemisms about death and dying should be avoided, and this awareness of the need for direct, simple language when communicating about death is exemplified by one participant who said: It can be confusing. I think they are inclined to see the deceased as still alive and living in heaven. At the same time they know they are not coming back and being dead means the body does not work anymore. (Grace)

The residential care facility involved in the present study has a strong religious ethos built into the philosophy of care. Thus, a high value was placed on religious and spiritual support. There is a tradition here of praying for someone who is sick or has died. The women seem to get strength and comfort from prayer. They all believe that everyone will meet up in heaven some day. I hear them saying “I wonder did whoever has died meet up with my brother/sister yet?” They have this unquestioning religious belief in the afterlife. (Madge)

Although participants agreed that the interplay of spirituality, religion, and ritual played a significant role in helping the elderly residents cope, adjust, and find meaning in their loss, frequently staff were faced with religious and ethical dilemmas in the course of supporting the bereaved. As one participant remarked: Most of the women here don’t deal with abstract concepts. One woman asked me to tell her what heaven is like. I described a beautiful place with flowers and sunshine where she would meet her sister again. I kind of painted a picture of heaven for her. She came back to me the next day to tell her the story again. Ethically or morally it may not be right, but it fitted with her beliefs. (Audrey)

And while for most participants religion was a useful explanatory framework, the use of religious beliefs were not always a source of comfort or uncomplicated explanation. As one participant reported, one terminally ill resident had a particular fear of going to hell:

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[the resident] knew she was dying and was really afraid that she would be punished in the next life. We tried to reassure her but she kept saying “I don’t want to go hell.” This could be some fear from a long time ago. We found it very upsetting. (Tess)

Similarly, religious ritual was seen as providing a structure for expressing emotional distress as well as a social context for shared meaning making and there was a general consensus among participants that rituals help to confirm the reality of death and provide an emotional outlet: We try to make sure everyone attends the Mass and funeral, we also get the person involved in the ceremony like bringing up the gifts; these are always items which were important to the deceased, we try to include their memories in the eulogy too. (Ellen)

and: I think the send off is very important. We are recognizing the whole life from the cradle to the grave and getting all her peers involved. This shows that everyone’s life is important and we are all sad together. (Audrey)

Many of the participants acknowledged that grieving is not over after the funeral and remarked how ongoing memorial services provided comfort and continuity with the past, encouraging the bereaved person to remain spiritually connected with their loved one. Participants explained how they had fostered the practice of rituals and memorial services within the center for the residents. There is a great emptiness after the funeral. They are looking at the empty chair and bed. We can go home to our families. The women here need to have ongoing ways of remembering the dead. The memorial services and the gathering of friends are comforting for the women. (Josie)

The majority of participants also considered visits to the cemetery an important part of the memorial process and a practical method of conveying some sense of the mystery of death: I think going to the grave yard indicates to the women that it is not all about going to heaven; there is a body and it is laid to rest here. (Ellen)

Staff Concerns: Gaps and Challenges Discussion on the gaps and challenges facing staff was unexpected as the study was principally oriented towards exploring staff perceptions of residents’ grief experiences, and comments on participants’ own experiences of supporting older women with ID were not explicitly sought at the outset of this research. However, participants made a number of comments and observations during the interviews, in particular on: (i) the need for education and training, and (ii) and on self-care for staff.

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The majority of the staff who participated in the study emphasized that their knowledge of bereavement issues was often inadequate. However, they had developed their own informal culture of bereavement care within the center. While many of the participants commented on feeling powerless to help residents around emotional expression, staff frequently improvised, implementing support strategies based on their own personal experience of loss. All of the participants believe that their competency and confidence would be greatly improved by ongoing education and training. Many of the statements made by participants are reflected in the following comments: I would love to do some courses about the best way to deal with bereavement in our women. We are often at a loss as to how to handle grief with someone who has little communication skills. I don’t think we should be making it up as we go along. (Josie) At the moment we are doing our care plan—filling in the bereavement page is problematic. How do we answer on behalf of somebody? How do we know how they feel? We need more training in assessing grief in our women. (Angela)

Many of the participants described how they developed strong bonds of affection for the residents in their care. This was especially true where the staff member had worked in the center for many years. The experience of supporting the client through deteriorating health and being present at their subsequent death left many carers distressed and, unfortunately, participants were of the opinion that this distress may not always be recognized by management within the center. As one participant aptly explained: There was this lady in the unit and I was really fond of her, she was like my granny and when she died I had to walk out of the room and attend to somebody else. There was nobody to take me aside and let me cry or make me a cup of tea. (Josie)

For others, however, their own personal feelings were secondary to their sense of duty and getting on with the job, as evident in the following extract: When someone dies on the unit you have to get into this mode of organizing the funeral, you don’t have time to think of how you or the rest of the staff are. We have a job to do even though we are grieving. (Angela)

DISCUSSION The present study has provided a unique opportunity to examine the bereavement experiences of a group of older persons living in a congregated setting. The results illustrate the multifaceted and complex nature of bereavement for this population and the potential for their grief to be disenfranchised or misunderstood. A first main finding was the high frequency of loss experienced by the residents

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and the resurrection of secondary loss (Hoover, Markell, & Wagner, 2005). Although this is to be expected given the age of residents and the nature of the residential center, staff frequently felt challenged in addressing these cumulative losses. Staff were cognizant of the impact these secondary losses had on residents and their potential to act as a catalyst evoking deep emotions and memories. Thus, participants described how yearning for home and an awareness of rejection by family and society were heightened for many individuals during times of bereavement. The impact of these attachment issues cannot be precluded in trying to explain bereavement and loss in this population (Bowlby, 1980). A major consequence of insecure attachment is the absence of a secure psychological identity, which is necessary for establishing relationships and adaptation to major changes (Clegg & Landsdall-Welfare, 1995; Dodd, Dowling, & Hollins, 2005). Insecure attachment is predictive of poorer grief outcome (Field & Sundin, 2001; Fraley & Bonanno, 2004). Moreover, unacknowledged difficulties with the attachment process are consistent with the concept of disenfranchised grief (Doka, 2002) and may increase vulnerability to prolonged grief (Dodd et al., 2008). The second main finding was the wide variety of challenges facing staff when supporting service users. For example, difficulties in communication and comprehension, determining when the griever was presenting with a psychological problem, difficulties in recognizing emotional expressions of grief and a delay in residents manifesting grief symptoms were all reported on by staff (Blackman 2003; Martin, O’Connor-Fenelon, & Lyons, 2010; McEvoy, MacHale & Tierney 2012; Read & Elliott, 2007). Of particular note was the variety of behavioral responses described as part of the grief response. In some instances, these behavioral responses were puzzling for staff who were often unsure how to manage such behaviors. Thus, challenging and uncharacteristic behavior such as compulsive behavior, hoarding, stealing, and absconding were frequently perceived to be significant indicators of expressions of grief and a method of signposting to carers that bereavement supportive strategies were required (Kauffman 2005; McEvoy et al., 2010). This contrasts with other studies which found that staff often failed to associate behavioral change with bereavement (Bonell-Pascual et al.,1999; Hollins & Esterhuyzen, 1997; MacHale & Carey 2002; MacHale et al., 2009). The complexities of using behavioral responses as indicators of grief were well illustrated by participants’ observation of delayed grief reactions. Participants were also aware of the potential for misinterpretation of residents behavior on the part of staff colleagues. Interestingly, a number of staff interpreted some of the more unusual behaviors (such as conversations with an imaginary friend) as evidence of continuing bonds (Klass, Silverman, & Nickman, 1996). A third main finding was that a number of residents appeared to hide their grief or keep their grief within themselves. This apparent denial or hiding/masking of grief has also been noted by Gilrane-McGarry and Taggart (2007). Staff were inclined to view such responses as maladaptive. In contrast, overt expressions of grief, such as crying, was viewed by staff as an important part of the mourning

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process and an effective way of ventilating feelings (Gilrane-McGarry & Taggart, 2007). Similarly, Ryan, Guerin, Dodd, and McEvoy (2011a) found staff preferred to facilitate expression of emotion. While there is some suggestion that avoidant coping strategies are strongly associated with depression in individuals with ID (Hartley & MacLean, 2005; Hartley, MacLean, & Abbeduto, 2009) it should be noted that suppression of grief does not necessarily have a detrimental effect on mental health (Bonanno, Keltner, Holen, & Horowitz, 1995; Wortman & Silver, 1989). On the other hand, grief which has no social context may cause individuals with ID to become inwardly self destructive (Kauffman, 2005) and talking openly about the loss has been found to help with post-bereavement adjustment (Kamm & Vandenberg, 2001). Also, those individuals who are more reluctant to talk about their bereavement are prone to health problems and symptoms of complicated grief (Lepore, Silver, Wortman, & Wayment, 1996). A fourth main finding was that many residents had a life history of exclusion from family funerals, thus denying them opportunities for preparation and decision making which others face at times of bereavement (Blackman, 2003; Hoover et al., 2005). Some staff suggested that this exclusion or “disenfranchisement” was a result of the social stigma attached to having a family member with ID. Others were of the view that relatives feared a public display of unusual or emotional behavior. McEvoy, Guerin, Dodd, and Hillery (2010) and Gilrane-McGarry and Taggart (2007) report similar findings of conflicting views between families and staff, contrary to Ryan, Guerin, Dodd, and McEvoy (2011b) who found families were generally more inclusive and supportive. However, a number of staff did remark that attitudes appear to be changing, with families of younger residents more likely to share information about illness and death with their relative. It is worth noting that lack of inclusion and discussion on change, illness, and death can have negative consequences such as silencing and prolonging the grief (Clute & Kobayashi, 2012) resulting in elevated levels of mental health disturbances and challenging behavior following bereavement (Bonell-Pascual et al., 1999; Hollins & Esterhuyzen, 1997; MacHale & Carey, 2002). Also, some individuals with ID may be at risk for pathological or complicated grief (Brickell & Munir, 2008; Dodd et al., 2008). And, although diagnosis of complicated grief is far from clearcut in this population (Dodd & Guerin, 2009), personal vulnerability and disenfranchised grief are two key contributory factors (Machin, 2009). A fifth main finding was that religious belief was an important source of coping support. Staff described three main ways of offering support: a) through practical interventions, such as creating photo albums, life story books, music and art therapy; b) through talking and providing information and explanation to service users; and c) through facilitating the use of religion and ritual. However, although staff commented that concrete, clear explanations and honest information was beneficial to residents, concepts, such as heaven, had explanatory power for service users. Also, rituals and religious ceremony had a therapeutic value and facilitated expressions of grief (Hoover, Markell, & Wagner, 2005; Rando, 2000;

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Rosenblatt, 2001). For instance, prayer and memorial services, visits to the cemetery, and the use of hymns and poems were described by participants as an important means of coping and promoting continuing-bonds with the deceased (Johnstone, Glass, & Oliver, 2007; Klass et al., 1996). Also, it was acknowledged that not all religious beliefs were of comfort to residents. Some had difficulties with the memory of past losses which increased their distress during the funeral (Dodd et al., 2008) and, as with the general population, others struggled with death-associated fears and anxieties (Solomon, Greenberg, & Pyszczynski, 2004). However, these findings add further weight to the significant role of religious ritual and belief plays in supporting individuals with an ID to cope with grief and loss (Dodd, McEvoy, McGovern, Smith, & Hillery, 2005; Hoover et al., 2005; McEvoy et al., 2012). Finally, although participants clearly acknowledged death as a significant issue and expressed commitment to supporting residents, largely they still feel illequipped to do so and stated that ongoing bereavement education and training is necessary to ensure knowledge and confidence in supporting this group who have a long history of marginalization (McEvoy et al., 2010; Ryan et al., 2011a). In addition, a number of participants commented on the emotional and personal impact of bereavement on staff. Following the death of a service user, carers often felt distressed and isolated. The need for recognition of the concept of “care for the carer” in their demanding role is well documented (McEvoy et al., 2010; Read, 2005; Ryan et al., 2011b). A more structured system which allows for staff to meet and remember the deceased person in a supportive environment coupled with clinical supervision, debriefing, and counseling where necessary, may be beneficial to overall self care (Papadatou, 2000). The study has several limitations. First, the picture conveyed may be incomplete due to recruitment bias with participants having a totally Christian (Roman Catholic) perspective. Thus, the views of staff holding non-Christian beliefs or of those who might not find religious or spiritual approaches helpful are not represented. Moreover, all participants were female. While religiosity does not appear to have any bearing on staff’s ability to talk about death, nursing staff with a religious background appear to be more confident in discussing and educating others about end of life issues (Bjarnason, 2010). A second obvious limitation is that residents voices were expressed through the staff who support them. A third potential weakness of the present study was the fact that this group had spent their entire lives in institutional care thus limiting generalization of the results to other populations of bereaved people with ID living in the community. Notwithstanding these considerations, the current findings complement and are supported by the findings from earlier studies. Moreover, the study does have some merit, highlighting that people with ID are not a homogenous group. Thus the study is an example of the need for more focused studies on specific populations such as people with ID, as findings from large sample studies may not be relevant to specific groups. Future research is warranted with groups whose

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