Published for the British Institute of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities 2015

Perspectives of US Direct Care Workers on the Grief Process of Persons with Intellectual and Developmental Disabilities: Implications for Practice Jennifer A. Gray and Maryann Abendroth School of Nursing and Health Studies, Northern Illinois University, DeKalb, IL, USA

Accepted for publication 19 January 2015

Background The study explored the grief process of persons with intellectual and developmental disabilities (PWIDDs) as perceived by direct care workers (DCWs) and how such workers can guide and support PWIDDs experiencing grief. Materials and Methods A thematic analysis approach was used to examine data from nine focus groups with 60 DCWs from five community-based organizations. Results Findings were supported in the context of seminal grief and bereavement theories. Three themes (i.e. reactions to loss, processing the loss and

Introduction The number of persons with intellectual and developmental disabilities (PWIDDs) is expected to double or triple over the next 20–30 years (Janicki et al. 1999; Patja et al. 2000; World Health Organization, The World Bank 2011; Coppus 2013), of which increasing numbers will use community-based residential services (Hayden et al. 2005; National Council on Disability 2012). With the exception of adults with Down syndrome or severe intellectual and developmental disabilities (I/DD), the life expectancy for PWIDDs is comparable to that of the general population. It is likely, therefore, that PWIDDs will experience the death of family members and even staff members in residential facilities (Perkins & Moran 2010). Direct care workers (DCWs)1 are key witnesses to

1 DCWs are frontline staff in the intellectual and developmental disabilities services field, and DCW is a general term for individuals titled as direct support professionals in the intellectual and developmental disabilities services field.

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incorporating the loss) and related subthemes emerged from the data. Conclusions PWIDDs are susceptible to traumatic grief, and DCWs are often key witnesses to such experiences. DCWs’ perspectives can guide the development of grief and bereavement training which can lead to more tailored support systems. Keywords: bereavement, direct care worker perceptions, direct care workers, theories of grief

PWIDDs’ experiences of loss and may play a significant role in guiding PWIDDs through the grief process (McEvoy et al. 2010; Handley & Hutchinson 2013). DCWs, however, may encounter many challenges in supporting PWIDDs with bereavement. For training to adequately prepare DCWs for these challenges, additional information is needed on their perspectives of the PWIDD grief process. Training addressing such DCWs’ perspectives can allow for more tailored support systems. The purpose of this study was to explore DCWs’ perceptions of PWIDDs’ grief process. We sought responses from DCWs serving PWIDDs, who regularly are exposed to PWIDDs’ bereavement care needs. Results are discussed within the context of seminal grief and bereavement theories. This study adds to existing research on PWIDDs’ grief process and can help to inform grief and bereavement trainings.

Grief and bereavement theories Grief and bereavement theories have evolved over time, spanning from early grief theories to the more recent 10.1111/jar.12189

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transformation theories of grief. Early grief theorists, such as Freud (1961) and Lindemann (1944), differentiated between normal and abnormal grief reactions and underscored the importance of cutting ties with the deceased. Following the work presented in early grief theories (Lindemann 1944; Freud 1961), grief stage theorists helped to separate the grief process into grieving behaviours situated within specific stages (Kubler-Ross 1969; Bowlby 1970; Parkes 1972; Worden 1983). Kubler-Ross identified five stages of grief (denial, anger, bargaining, depression and acceptance) based on clinical observation, rather than on empirical data, of terminally ill individuals (Kubler-Ross 1969). Bowlby’s attachment theory indicated that one’s grief process is influenced by the type of attachment one had with the deceased (Bowlby 1970) and that the bereaved experiences the four stages of shock, yearning and protest, despair and recovery (Bowlby 1961, 1970). Parkes’ grief theory included the four phases of grief, being shock or numbness, yearning or pining, disorganization and despair, and recovery (Parkes 1972, 1998; Parkes & Weiss 1983). Worden’s theory of grief focused on active tasks of mourning, rather than passive experiences of grief. Such tasks included accepting the loss (task 1), processing the grief experience (task 2), becoming acclimatized to a new environment, such as adopting new roles without the deceased (task 3), and moving onto a new life (task 4) (Worden 1983, 1991, 2002). In addition to stage theories, some of the more recent grief theories can help one to understand the grief coping process. Two of these theories include the dual process model of bereavement (Stroebe & Schut 1999) and the grief to personal growth theory (Hogan & Morse 1996; Hogan et al. 2001). The dual process model of bereavement (Stroebe & Schut 1999) suggests that individuals must manage both the grief process (loss orientation) and adopt meaningful lifestyle changes postloss (restoration orientation). Such negotiation likely occurs in a simultaneous and overlapping, rather than linear fashion (Stroebe & Schut 1999). The grief to personal growth theory builds further on prior theories by suggesting that one can realize transformation – not only resolution – through a bereavement process (Hogan & Morse 1996; Hogan et al. 2001). A healthy grief process allows for personal growth to be achieved in significant ways following a loss (Hogan & Schmidt 2002). Grief theories have evolved over the decades to help explain the grief process. Stage theories suggest that individuals grieve in specific ways at certain stages or phases of the grief process. More recent theories define

the grief process as a growth process that transpires as one works through the grief – one’s life is transformed by the loss. Such theories can be useful for staff working with PWIDDs experiencing grief.

PWIDDs’ experience with loss and grief Contrary to common belief, PWIDDs do respond to loss (Dodd et al. 2005). McEvoy et al. (2012) studied PWIDDs with mild-to-moderate levels of intellectual and developmental disabilities and found that the majority had at least some comprehension of death (McEvoy et al. 2012). As Dusart (2008) indicates, ‘there may be difficulties establishing the chronology of events, confusion as to the circumstances of death, misunderstandings about the causes of death, but the reality of death itself, that of ‘non-life,’ seems to be understood’ (Dusart 2008: 436). Because PWIDDs often are excluded from rituals (e.g. funerals) or information about death and dying, they may experience disenfranchised grief, in which their grief is not recognized, leaving limited opportunities to grieve (Doka 2002). Much remains to be known about the experience of loss for PWIDDs (McRitchie et al. 2014). PWIDDs’ experiences of grief vary considerably, due to such factors as cognitive levels and personality (Dodd et al. 2005). Studies have shown that PWIDDs may have a homogenous experience of loss as their grief process may be similar, regardless of the type of loss (Harper & Wadsworth 1993; Cushing & MacMillan 2011). For example, they may perceive events such as staff turnover, relocation of other PWIDDs or staff and death of a pet as equivalent to human death (Harper & Wadsworth 1993; Cushing & MacMillan 2011). McEvoy et al. (2012) found PWIDDs to be more accepting of some concepts related to death (e.g. causality, irreversibility and universality of death for all things) compared to others (e.g. cessation of bodily functions and the inevitability of one’s own death). PWIDDs are considered to be susceptible to traumatic grief (also known as complicated or prolonged grief) (Dodd et al. 2005, 2008; Dowling et al. 2006). Traumatic grief manifestations are related to separation distress which is an intense longing for the deceased and difficulty adapting to a new life following the loss. Persons experiencing traumatic grief also have problems talking about their loss and cognitive challenges in finding meaning from loss (Brickell & Munir 2008). Separation distress may result from close relationship bonds being broken, such as the loss of close relatives, including parents or other primary caregivers (Bowlby © 2015 John Wiley & Sons Ltd

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1970; Dodd et al. 2008). PWIDDs are likely to outlive both of their parents, who often have played a significant role in caregiving (Brickell & Munir 2008). Secondary loss often is experienced, as the loss of the parental relationship and the life the parents provided for their children. For example, once the parents die, PWIDDs are unlikely to be able to live independently and generally need new caregivers (Brickell & Munir 2008). PWIDDs’ residences may be changed multiple times due to parental death, which can be destabilizing and stressful (Brickell & Munir 2008). PWIDDs can experience a prolonged grief process that may last longer than the grief process for adults in the general population (Brickell & Munir 2008). Problematic behaviour and negative health consequences related to the loss can continue for years. Such prolonged grief can be due to difficulties in understanding the loss (e.g. the finality of death), which, in turn, can contribute to various atypical grief behaviours (Dodd et al. 2005; Mutkins et al. 2011). PWIDDs may have problems communicating their experiences of grief (McEvoy et al. 2010). Their experience of grief is evident through verbalization, body language and expression of emotions (Dodd et al. 2005). This may be the expression of feelings of sadness, depression, anxiety, pain, anger and confusion (Dodd et al. 2005). Indicative behaviours also can include physical violence, self-harm and hyperactivity (Dodd et al. 2005). Although PWIDDs do experience the loss, the variability of their grief process can make it challenging for DCWs helping them heal from the loss. Some challenges include PWIDDs’ experience of traumatic grief, consisting of separation distress (key relationships being broken) and a prolonged grief process. PWIDDs may react to a wide range of losses (e.g. death of loved ones; staff relocation) and have difficulties communicating their experiences of grief. Staff can benefit from training to learn how to identify PWIDDs grieving various losses and communicate with them most effectively.

Staff perceptions of the PWIDD grief process Although staff (i.e. DCWs) regularly support PWIDDs during times of grief and bereavement (MacHale et al. 2009), multiple demands make it difficult for staff to do so, including competing work demands, as well as their own grief process (Handley & Hutchinson 2013). For example, it is necessary for staff to communicate well about death and loss, such as assisting with rituals (Dodd et al. 2005). PWIDDs who are not adequately © 2015 John Wiley & Sons Ltd

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prepared for bereavement have been shown to experience greater levels of loss (Bowey & McGlaughlin 2005). Staff also must manage PWIDDs’ various behavioural and emotional responses to grief, including manifestations of traumatic grief (Dodd et al. 2005). Staff may struggle with distinguishing between PWIDDs’ reactions resulting from the loss itself (e.g. parental death) or the secondary loss (e.g. moving residences due to the parental death) (Bonell-Pascual et al. 1999). Staff often do not receive the necessary training or guidance to provide adequate bereavement supports (McEvoy et al. 2010). Organizational expectations to assist staff caring for grieving PWIDDs may be unrealistic, considering staff knowledge and skill levels (Dowling et al. 2006). Staff also sometimes assume that bereavement care should be provided by specialists (MacHale et al. 2009; Watters et al. 2012). Such expectations may contribute to staff stress (Dowling et al. 2003) and ultimately gaps in needed care (McEvoy et al. 2010). Although grief and bereavement trainings exist in the I/DD field, most have not been evaluated or reported in the peer-reviewed literature. Published studies on evaluated trainings have tended to report on PWIDDs’ experience with and reactions to loss, yet trainings may not have focused on challenges DCWs encounter in supporting PWIDDs and ways they can help PWIDDs move on post-loss (Reynolds et al. 2008; FaheyMcCarthy et al. 2009; Hahn & Cadogan 2011). Staff have indicated that they need more information and support in assisting PWIDDs of different cognitive levels and communication needs with their grief (McEvoy et al. 2010). There is limited information of staff perspectives of PWIDDs’ grief process (Handley & Hutchinson 2013), and such information can help inform staff training. Training addressing such staff perspectives can help them provide more tailored support systems, and ideally help PWIDDs work through or bypass traumatic grief reactions. The purpose of this study, therefore, is to examine DCWs’ perceptions of PWIDDs’ grief process. This adds to existing information about PWIDD grief and bereavement which can inform DCW training, enhanced by the insights of such workers.

Materials and Methods Participants and data collection Five community-based organizations serving PWIDDs were selected through purposeful sampling to provide

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variation in ownership status, available services and organization size (Stake 2000). Participating organizations provided similar services specific to residential and day programming. All organizations were non-profit. The organizations employed between 20 and 330 DCWs and served between 80 and 420 PWIDDs. PWIDDs included individuals of both genders, age ranges from children through the mid-80s and a wide range of intellectual and developmental abilities. DCWs from the participating organizations were recruited using posted flyers and letters explaining the study. Nine focus groups were conducted with 60 DCWs from five community-based organizations serving PWIDDs. One to three focus groups averaging five to six participants were conducted in each of the organizations. Each session lasted approximately 60 minutes. Prior to each of the focus group sessions, participants completed a short demographic questionnaire. Participants were encouraged to describe PWIDDs’ experiences of grief and bereavement and ways they supported them during these times. A sample of questions used in the focus group discussions include the following: 1. How have PWIDDs in your organization reacted when they learned about the death of someone? 2. In what ways have PWIDDs in your organization been affected when their friends receiving palliative care were moved to another care setting? 3. What have been challenges in supporting PWIDDs in your organization with their grief/bereavement processes? Participants were asked about the meanings of specific concepts and comments raised in previous focus groups, which helped to establish credibility (Miles & Huberman 1994; Krueger & Casey 2009). Confirmability was established by member checking (i.e. informal meetings with DCWs from the focus groups) and by meetings with the qualitative data analysis group to interpret the findings and ensure that additional themes had not been omitted (Guba & Lincoln 1989). Although some studies have obtained information related to grief and bereavement from PWIDDs themselves (McEvoy et al. 2012; McRitchie et al. 2014), we chose to collect data about PWIDD grief from the DCWs for a variety of reasons. Due to the range of intellectual abilities in the PWIDD population, and potential difficulties with communication, we determined that information collected from the DCWs, rather than the PWIDD themselves, would be more

reliable (Dodd et al. 2005). Furthermore, we desired to obtain DCWs’ perceptions of the PWIDD grief process so that study results could influence the topics considered in training development.

Ethical considerations The study was approved by the University Institutional Review Board and the participating organizations’ review processes. Informed consent was obtained prior to conducting each of the focus group sessions. No contamination of data between organizations was possible within the context of the focus groups, as the focus groups were held for DCWs at each of the respective organizations. There was no duplication or crossover of DCWs participating in focus groups across the organizations. Rooms used for the sessions in each organization allowed for adequate space and privacy. The focus group discussions were digitally recorded, transcribed verbatim and deidentified for analysis.

Data analysis A thematic analysis approach was used to examine data with Atlas-ti v. 5.0 data management software (Atlas.ti 2004). The stories of the DCWs were categorized into parts that encompassed their perspectives of the PWIDD grief process. The coding process started with topic coding to identify larger groupings of data on a certain topic for further categorization (Richards & Morse 2007). From these preliminary topic codes, key themes and subthemes were identified through clustering and memo writing. The process started with a review of the digital recordings and focus group field notes, detailed analysis of the transcribed data (line-by-line), memo writing and coding of this data. Coding included both open and more focused coding strategies. The authors participated in a qualitative data analysis group of colleagues versed in qualitative methodology. The group members reviewed quotations, codes, themes and subthemes as a way to establish confirmability (Glaser & Strauss 1967; Charmaz 2006). The qualitative data analysis group met weekly for 3 months, to discuss the methodological process and the meanings that emerged from the data. Additional issues, such as potential investigator bias, were addressed during the meetings (Shenton 2004). This valuable input helped guide the data analysis and coding process.

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family caregivers, for a more well-rounded understanding of PWIDDs’ grief process. Furthermore, DCWs and other staff often struggle with grief issues themselves (Rickerson et al. 2005; Anderson & Gaugler 2006; Handley & Hutchinson 2013). DCWs’ grief process can interact with that of PWIDDs and should be explored in greater detail in ongoing research. Future research can utilize established grief and bereavement theories to examine the utility of bereavement training on DCW care practices. DCWs might be assessed of their awareness of different grief theories before and after training or identify PWIDDs’ current grief stages (Handley & Hutchinson 2013). For example, using the dual process model of bereavement, DCWs could identify actions indicating PWIDDs are in a loss or restoration orientation (Stroebe & Schut 1999). DCWs also might assess PWIDDs for what grief stages they are at according to Kubler-Ross’ five stages of grief (Kubler-Ross 1969), Bowlby’s four stages (Bowlby 1961, 1970), Parkes’ four phases of grief (Parkes 1972, 1998; Parkes & Weiss 1983) or Worden’s tasks of grieving (Worden 1983, 1991, 2002). The study results indicate the need for trainings to address not only identification of PWIDDs who are bereaved and information on grief and bereavement for PWIDDs, but also better communication modalities to help PWIDDs process and incorporate the loss in their lives. This process will require the development of tools and on-the-job applications (McEvoy et al. 2010). Content might include helping PWIDDs with venting their emotions, and moving on with their lives by learning new activities, making new friends, etc., yet still remembering their loved ones. The purpose of this study has been to explore DCWs’ perceptions of PWIDDs’ grief experiences. This provides more insight into the ways PWIDDs process their grief and heal, and can inform grief and bereavement trainings. DCWs with adequate knowledge and skills are better equipped to handle their own grief and help or prevent PWIDDs from experiencing traumatic grief reactions. A better understanding of PWIDDs’ grief process gleaned from existing theoretical frameworks coupled with field-based research can provide a strong foundation for DCWs in their work with PWIDDs.

Acknowledgments This study was funded by a Northern Illinois University College of Health and Human Sciences grant. This study was approved by the Institutional Review Board © 2015 John Wiley & Sons Ltd

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of Northern Illinois University (HS13-0149). The funding body has placed no restrictions on free access to or publication of the research data. The content is solely the responsibility of the authors and does not necessarily represent the official views of Northern Illinois University. The authors are grateful for the support and assistance of our colleagues from Northern Illinois University, including Aimee Prawitz, Jinsook Kim and Samantha Brown.

Conflict of Interest There are no conflict of interests to report.

Correspondence Any correspondence should be directed to Jennifer A. Gray, School of Nursing and Health Studies, Northern Illinois University, 250 Wirtz Hall, DeKalb, IL 60115, USA (e-mail: [email protected]).

References Anderson K. A. & Gaugler J. E. (2006) The grief experiences of certified nursing assistants: personal growth and complicated grief. Omega-Journal of Death and Dying 54, 301–318. ATLAS.ti. Version 5.0. (2004). Scientific Software Development, Berlin. Bonell-Pascual E., Huline-Dickens S., Hollins S., Esterhuyzen A., Sedwick P., Abdelnoor A. & Hubert J. (1999) Bereavement and grief in adults with learning disabilities: a follow-up study. British Journal of Psychiatry 175, 348–350. Bowey L. & McGlaughlin A. (2005) Adults with a learning disability living with elderly carers talk about planning for the future: aspirations and concerns. British Journal of Social Work 35, 1377–1392. Bowlby J. (1961) Processes of mourning. International Journal of Psychoanalysis 42, 317–339. Bowlby J. (1970) Loss: sadness and depression. Attachment and Loss Vol. 3. Basic Books, New York. Bramston P. & Fogerty G. (2000) The assessment of emotional distress experienced by people with an intellectual disability: a study of different methodologies. Research in Developmental Disabilities 21, 487–5000. Brickell C. & Munir K. (2008) Grief and its complications in individuals with intellectual disability. Harvard Review of Psychiatry 16, 1–12. Charmaz K. (2006) Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Sage Publications, Thousand Oaks, CA. Coppus A. M. V. (2013) People with intellectual disability: what do we know about adulthood and life expectancy? Developmental Disabilities Research Reviews 18, 6–16.

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Table 2 Related themes and subthemes Themes

Subthemes

Reactions to loss

Emotional and behavioural expressions Denial and avoidance Re-experiences of loss Making sense of the loss Emotional healing Organizational rituals Individual remembrances

Processing the loss Incorporating the loss

Some DCWs observed that PWIDDs responded with shocklike behaviour when reacting to loss. Such responses occurred upon hearing of the loss and during anniversary periods. DCWs spoke of PWIDDs expressing their shock differently, and their reactions could manifest as a flat affect, a type of numbness (limited emotional expression) or ‘freezing’ (non-responsiveness). The result of such numbness or freezing prevented the PWIDDs from talking, from further expressing their feelings regarding what was bothering them. The following DCW spoke of the experience of shock by PWIDDs as a type of emotional paralysis. Sometimes their affect is that they don’t feel anything. . . It was like they had a hard time trying to even put in the words what they were feeling. I don’t know if it is just a stun thing for them? Alternatively, shocklike behaviour took the form of strong emotions. This quote demonstrates PWIDDs’ emotional outbursts in response to loss. DCWs spoke of how they tried to help PWIDDs express themselves, as well as to calm them down. He just started hollering. “Mary’s son! Mary’s son!” I’m like, “What? What? What about Mary’s son?” I calmed him down. I said, “John, what’s wrong?” He said, “Mary’s son is dead. Mary’s son is dead.” He just kept saying and saying it. I have one person that lost her mother suddenly. . . She had more outbursts. A rougher time than it was expected.

Denial and avoidance DCWs spoke of PWIDDs exhibiting behaviours that could suggest denial or avoidance of loss. In some cases, this consisted of PWIDDs verbally denying the

loss, whereas in other cases, PWIDDs avoided the topic by focusing their attention elsewhere. DCWs spoke of some PWIDDs exhibiting denial as a refusal to accept a loss. This could happen, for example, when a PWIDD appeared to deny a statement of fact laid out before them. One client denies. When I tell her, “Where is your sister?. . . She denies [that the sister went to the hospital]”. PWIDDs could become involved with or focused on other activities when presented with information about a loss. Rather than an acknowledgement of the loss, PWIDD focused on other events, both in the present and the future, as noted by this DCW. Just not too long ago, we had a client pass away in the home . . . The clients were upstairs, when I went up to tell them. They really didn’t say anything. They just kept talking about, what are we eating for dinner? Are we still going to the movies tomorrow?

Re-experiences of loss DCWs also witnessed PWIDDs re-experiencing loss during anniversaries and certain holidays, or when the topic of death or other loss was discussed. DCWs reported PWIDDs re-experiencing the loss at a similar intensity to the initial loss, indicating confusion with the temporal order of events. Unresolved grief seemed to contribute to these re-occurrences of grief for PWIDDs. Memories of the loss were triggered by specific anniversaries (e.g. a birthday, a wedding) or holidays when PWIDDs had spent time with the deceased. DCWs spoke of how PWIDDs’ recollections of such anniversaries led to a flood of behaviours and emotions. When I say that, if they’ve given news that a [parent] has passed, immediately there’s crying. Then, they move on like you didn’t tell them the information. When there’s an anniversary or something. . . we begin to see changes in their behavior during that time. . . on an anniversary, of a wedding anniversary or a person’s birthday, then there is more acting out behavior or crying. DCWs noted that seasonal periods associated with the anniversary also could trigger PWIDD reactions. This DCW spoke of a PWIDD showing signs of grief during the time of year his mother died. © 2015 John Wiley & Sons Ltd

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There is an individual that in May, he lost his Mom. He gets upset, and it’s always in May that a lot of these issues come up. It just seems like she’s in California [in her former home]. He’s never got to see the grave, so it’s just maybe thinking about why he has so many issues in May. Present losses sometimes triggered past losses, where the past loss suddenly took on the fabric of a presentday occurrence. From the perspective of this DCW, PWIDDs’ grief could be ever-present, and certain events could quickly allow it to resurface as noted by this DCW. They keep it for a long period of time. They remember from time to time, and they cry. The issue is still with them I think forever. They remember the person like it was before. They don’t forget. Then you bring. . . this topic [of death] to them, they start crying, like it was the same one. . . From the past it’s always in the present.

Processing the loss The second theme processing the loss expressed PWIDDs’ engagement with the reality of the loss. Such engagement often was associated with ensuing emotions. This theme included the subthemes of making sense of the loss and emotional healing. These subthemes represented the ways that PWIDDs seemed to understand the loss as well as how they processed their emotional reactions to loss over time through the eyes of DCWs.

Making sense of the loss The making sense of the loss subtheme represented DCWs’ perspective of how PWIDDs understood their loss. DCWs talked of how PWIDDs’ abilities to understand the concept of death ranged widely. DCWs also attempted to help PWIDDs’ process their loss, as best as they could. DCWs also spoke of observing PWIDDs as they processed the grief. To tackle the situation is another thing. How are they going to understand that? A few of them different service user personality responses to grief understand what is death. Some of them don’t. DCWs tried to communicate with PWIDDs based on their perceptions of each PWIDD’s understanding of © 2015 John Wiley & Sons Ltd

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loss. One DCW, for example, attempted to affirm a PWIDD’s explanation of where her brother had gone after death. We have the individual where she, I would say, her brother had just recently passed. She says he’s in heaven, so we go with that. Yes, your brother’s in heaven and whatever. She dealt with it better than we thought she would. She knows he’s in heaven, so that’s what we say to her. Another DCW provided specific guidance related to counselling PWIDDs about the topic of death by saying, ‘You just don’t go around initiating. If the client brings something up about a person’s death, you would address that issue at that time. You just don’t go around initiating conversations about it’. Some PWIDDs had problems distinguishing deaths that happened in the past, rather than the present. DCWs could help PWIDDs temporally contextualize their grief process by localizing the loss in a time-based continuum (i.e. what happened in the past as opposed to the present.) Such support could help PWIDDs process their experience as explained by this DCW. A lot of them, they grasp [onto]. . . previous deaths in the family when they’re younger. They start having those memories come in and that’s what they start talking about it the moment. . . I’m trying to help them out with saying that was a long time ago, or it’s not now. You just try to make it move forward. DCWs spoke of the necessity for PWIDDs’ grief process to unfold organically. Each PWIDD needed time to grieve. DCWs tried to allow for this time and space. She went through it probably about a little over a year now or something like that. It was just like anyone else. She has to take her process. She had to grieve. The one that stayed in the room, that slept in the same room with him. He shut himself off from everyone else. He stayed in the room. Sometimes he would stand there and look at the bed where the resident slept. I knew what was going on so we gave him his time or whatever but then as the other residents noticed that he wasn’t there anymore . . . You could just tell the sadness in their face. It was about maybe a week of them realizing because

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some residents do go home and some stay for quite a few days and then they’ll come back. It lasted a week and once they realize he wasn’t coming back is when they was like, “Okay, we got to move on”.

Emotional healing The subtheme of emotional healing referred to ways PWIDDs began to process their loss and how DCWs guided them through this experience. DCWs helped to affirm the normalcy of the PWIDD grief process by listening and responding to their concerns during this time period. Some DCWs provided suggestions on ways to process the grief that would be meaningful to the PWIDD. “Oh, I’m sad”, they said . . . I say, “Are you okay or do you need something . . . ?” “I miss my Mama”. “Oh okay, yes. That’s natural . . . That she’s in heaven. You need to pray or you need to talk to that person”. PWIDDs were encouraged to cope with their feelings using creative means. This included expression through such activities as creative writing, music or art as a way to connect with specific emotions. ‘Also, they can express by writing or colouring or painting their emotions’.

Incorporating the loss The theme incorporating the loss included the subtheme of organizational rituals and individual remembrances. This referred to opportunities for PWIDDs to remember the loved one, to gain some degree of acceptance of the loss and ideally to move on with their lives. Organizational rituals and individual opportunities for remembrances were used to facilitate the healing process by helping PWIDDs bring closure to the loss.

Organizational rituals Organizational rituals, such as memorial services or more informal meetings, such as a dinner dedicated to the deceased, served as a forum for PWIDDs to express their grief and recall memories of their loved ones. This ritual could help PWIDDs accept the reality of the loss. This DCW described a service that allowed for everyone to share memories with the group, and in so doing, contributes to an overall positive atmosphere about the loss as noted here.

They had a beautiful ceremony . . . I heard that everyone did an awesome job with his going home . . . We have a wreath with his pictures and things so he’s not forgotten because his presence is still there. We have a collage board with everyone on it, so they can go back and tell their stories. ‘I remember this day, we did this. I remember that day.’ They have all positive outlooks of it now. This DCW spoke of how a memorial service was used to remember not only the recently deceased, but others who have died over the years. Through expression of feelings and group sharing of memories, this DCW noted that this was the way that they could metaphorically lay the deceased in the past, and move on with the present. We have a day where we have sandwiches and we all talk. We bring pictures, not of just the person that die at that moment, people in the past. We bring out pictures of all of them, especially of the person that died recently, so we all talk. We have all the clients come up. Whoever wants to, it’s their choice, to express their feelings. . . Sometimes, the families are invited of the person that have passed. Here, that’s how we deal with it in the past.

Individual remembrances Individual remembrances referred to more personal opportunities to remember the loss. This could include, for example, obtaining a memento of the deceased that would help them remember the deceased. The presence of such a memento allowed for PWIDDs to feel some sense of connection to the deceased. This DCW talked about how allowing for PWIDDs to have such mementos seemed to make them feel better. Sometimes the clients were asked if they can have an item from somebody that passed away. Something to keep the memory of them of what they had or something. If the family doesn’t want all of the stuff. We try to accommodate that for the clients. Like their hat or a sweater or a stuffed animal or something. It makes them feel good that they have part of them to remember them by. The mementos helped PWIDDs recall positive stories and appreciate the deceased in a positive way. These mementos were integral to the healing process, as noted by a DCW who recalled washing a coat with a PWIDD. © 2015 John Wiley & Sons Ltd

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The coat had been a gift from the PWIDD’s father. The DCW used this memento to initiate a discussion about the father, with a particular focus on the positive memories rather than the grief experience. The following is the DCWs account of this experience. They’ll come to you when it’s the anniversary of [the client’s dad], like, ‘My dad had this coat and he gave me this coat.’ [I say] ‘It’s getting a little dusty. Let’s wash it together.’ Then while we’re washing it, he can tell me stories about, ‘How did you get this coat? When did your dad wear this coat?’ I spark up a conversation so they can talk about it. Then we talk about all these wonderful memories. . . Then we’ll laugh. Instead of the memory of the passing being sad, we turned it into a happy memory because I kind of reversed psychology and just switched it around. The DCW spoke further about the importance of using this opportunity to help the PWIDD focus on the positive aspects of the memory as noted here. In order to do so, staff listened to the PWIDD’s story and engaged in a discussion about the PWIDD’s memories of the person. Just reminding our clients to remember the positive things about that person. Not always remembering the negative. Giving them an opportunity to talk about it. Even if it’s just a second. They mention it and they’re thinking about it. Just allow them to talk about it and you just listen. Sometimes, we don’t listen. Just listen to a story that they miss this person. What they did with that particular person.

Discussion This study explored PWIDDs’ experiences of grief through the vantage point of DCWs. Results are discussed with respect to the concepts from existing grief and bereavement theories. Themes from the results section can inform the development of grief and bereavement trainings in the I/DD field and how staff might serve in more supportive roles. The theme of reactions to loss and related subthemes (emotional and behavioural expressions, denial and avoidance, and re-experiences of loss) provides examples of ways PWIDDs experience grief. Due to a higher lifetime stress load (Cummins 2005), coupled with inadequate coping resources (Bramston & Fogerty 2000), PWIDDs’ © 2015 John Wiley & Sons Ltd

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experience of loss may be particularly challenging (Mitchell & Clegg 2005). When PWIDDs were experiencing a crisis, DCWs served as witnesses as well as comforters. DCWs spoke of PWIDDs exhibiting a variety of reactions as they experienced and sometimes re-experienced the shock of loss at anniversaries. This theme as a whole is comparable to the stage of shock or numbness (Bowlby 1961; Parkes 1972, 1998; Parkes & Weiss 1983), as well as disbelief or denial (Kubler-Ross 1969) present in several of the grief stage theories. This suggests that staff do attribute some PWIDD behavioural reactions to PWIDD grief experiences, rather than the disability itself, unlike what has been found in other studies (Hollins & Esterhuyzen 1997; Dowling et al. 2006). The processing the loss theme included the subthemes of making sense of the loss and emotional healing and showed PWIDDs beginning to work through the reality of the loss. With the processing the loss theme, DCWs played a more active role in assisting PWIDDs to move through the grief process. For example, some DCWs assisted PWIDDs to differentiate what happened in the past rather than in the present. Assisting them to temporalize their loss allowed them to make sense of the loss depicted in the subtheme, making sense of the loss. Temporalizing the loss helped PWIDDs distance themselves psychologically from the loss event and begin to heal. The emotional healing subtheme seems to incorporate aspects of the stage of yearning, present in other grief stage theories (Bowlby 1961, 1970; Parkes 1972, 1998; Parkes & Weiss 1983). DCWs spoke of PWIDDs expressing loss of their loved one. This often is observed as separation distress, an aspect of traumatic distress, as a pronounced longing for the deceased (Brickell & Munir 2008). With the incorporating the loss theme, rituals offered opportunities for PWIDDs to begin the healing process by fostering closure and positive memories of the deceased. This is comparable to that presented in the grief stage theories, such as the stages of acceptance (Kubler-Ross 1969), recovery (Bowlby 1961, 1970; Jacobs 1993) and Worden’s tasks of becoming acclimatized to a new environment without the deceased (task 3) and moving onto a new life (task 4)(Worden 1983, 1991, 2002). Bowlby’s (1970) Continuing Bonds Theory indicates that bonds with the deceased need not be completely broken but be re-established in new, possibly healthier ways (Bowlby 1961, 1970). This may have been evident in PWIDDs obtaining a memento of a loved one and in staff engaging PWIDDs in stories about loved ones. This also may have alleviated

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PWIDDs’ difficulties with separation distress (an aspect of traumatic grief) as they developed a new connection with the deceased. Stroebe & Schut’s (1999) Dual Process Model of Bereavement suggests that the bereaved manages both loss and restoration-oriented processes. Loss processes include managing one’s connection with the deceased, the former life with the deceased and various emotional responses to dealing with such issues. Restoration processes refer to taking on new roles and communication patterns post-loss (Stroebe & Schut 1999). It has been suggested that restoration theories of grief, however, can be difficult to apply to most PWIDDs; unlike adults with mobility and independence, PWIDDs are dependent on others for their well-being (Brickell & Munir 2008). DCWs helped PWIDDs foster positive memories of the deceased and accept the loss through organizational and personal rituals, providing a basis for restoration. Such actions may allow PWIDDs to move on with their lives. Other interventions and therapies may be helpful for PWIDDs to recover from their loss. For example, DCWs may help PWIDDs set and master reasonable life goals (Parkes 1998). In some cases, PWIDDs have needed an opportunity to talk about their grief experiences as a way to process and accept the loss (McRitchie et al. 2014). Knowing how to help PWIDDs with bereavement has been shown to be a challenge for staff in the I/DD services field. Such staff often do not have adequate organizational resources and skills to provide adequate bereavement counselling or other supports (Dowling et al. 2006).

Implications for practice Bereavement supports provided to PWIDDs will vary from client to client, as PWIDDs are not a homogenous group (Dodd et al. 2005). Furthermore, their bereavement needs will differ, depending on factors such as their attachment to the deceased, their place in the grief process and their cognitive abilities. For example, the support provided for PWIDDs experiencing the crisis of a loss (reactions to loss theme) certainly will differ from support for PWIDDs needing assistance with healing and closure (incorporating the loss theme). DCWs might learn how to facilitate rituals for healing and how to help PWIDDs express their emotions during key periods of the grieving process. It is critical that PWIDDs’ and DCWs’ needs with respect to bereavement rituals are heeded (Handley & Hutchinson 2013). Organizational support is essential, and some DCWs in our study indicated concern that they did not

have adequate training or resources to help the PWIDDs with such reactions. McEvoy et al. (2010) have noted that staff need practical tools to support PWIDDs with grief issues (McEvoy et al. 2010). Resources, such as employing software and storyboard formats, have been developed to help PWIDDs talk about loss (Read et al. 2013). Other interventions, such as reminiscence and life review, are beginning to be explored to help PWIDDs process loss (Puyenbroeck & Maes 2006). For example, reminiscence group work intervention sessions with adaptation and specific resources, including mind maps, have been shown to help PWIDDs work through feelings of loss (Puyenbroeck & Maes 2006). While elements of grief stage theories seem to be present in the study themes, DCWs also can incorporate aspects of the dual process model of bereavement (Stroebe & Schut 1999) and transformation theories of grief (Hogan et al. 2001) in helping PWIDDs process grief. While it might not be possible for many PWIDDs to attain restorative qualities (present in grief theories) through independent living (Brickell & Munir 2008), DCWs and supportive organizations might facilitate some of these qualities. For example, although PWIDDs might experience secondary loss through changing residences due to the death of a parent or other family member (Brickell & Munir 2008), alternatively, this could be a positive change. A supportive housing arrangement could provide PWIDDs with opportunities to meet new people and engage in a variety of activities contributing to their growth. Furthermore, such changes might not have taken place if the significant other had not died: due to this loss, the PWIDD might realize new opportunities (Hogan & Schmidt 2002), rather than just resolution or restoration (Stroebe & Schut 1999).

Limitations and future directions The purposeful convenience sampling strategy permitted data to be collected only from non-profit organizations serving PWIDDs in a midwestern state. As such, the findings may not be relevant for other populations. DCWs’ experiences with PWIDDs across different types of organizations in various United States geographical areas may vary, which may affect the generalizability of the results. Notably, however, qualitative research benefits from subjective experience without purporting to result in generalizable findings (Charmaz 2006). Only DCWs were sampled with respect to their perspective of PWIDDs’ grief process, but future research should explore the perspectives of PWIDDs, as well as © 2015 John Wiley & Sons Ltd

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family caregivers, for a more well-rounded understanding of PWIDDs’ grief process. Furthermore, DCWs and other staff often struggle with grief issues themselves (Rickerson et al. 2005; Anderson & Gaugler 2006; Handley & Hutchinson 2013). DCWs’ grief process can interact with that of PWIDDs and should be explored in greater detail in ongoing research. Future research can utilize established grief and bereavement theories to examine the utility of bereavement training on DCW care practices. DCWs might be assessed of their awareness of different grief theories before and after training or identify PWIDDs’ current grief stages (Handley & Hutchinson 2013). For example, using the dual process model of bereavement, DCWs could identify actions indicating PWIDDs are in a loss or restoration orientation (Stroebe & Schut 1999). DCWs also might assess PWIDDs for what grief stages they are at according to Kubler-Ross’ five stages of grief (Kubler-Ross 1969), Bowlby’s four stages (Bowlby 1961, 1970), Parkes’ four phases of grief (Parkes 1972, 1998; Parkes & Weiss 1983) or Worden’s tasks of grieving (Worden 1983, 1991, 2002). The study results indicate the need for trainings to address not only identification of PWIDDs who are bereaved and information on grief and bereavement for PWIDDs, but also better communication modalities to help PWIDDs process and incorporate the loss in their lives. This process will require the development of tools and on-the-job applications (McEvoy et al. 2010). Content might include helping PWIDDs with venting their emotions, and moving on with their lives by learning new activities, making new friends, etc., yet still remembering their loved ones. The purpose of this study has been to explore DCWs’ perceptions of PWIDDs’ grief experiences. This provides more insight into the ways PWIDDs process their grief and heal, and can inform grief and bereavement trainings. DCWs with adequate knowledge and skills are better equipped to handle their own grief and help or prevent PWIDDs from experiencing traumatic grief reactions. A better understanding of PWIDDs’ grief process gleaned from existing theoretical frameworks coupled with field-based research can provide a strong foundation for DCWs in their work with PWIDDs.

Acknowledgments This study was funded by a Northern Illinois University College of Health and Human Sciences grant. This study was approved by the Institutional Review Board © 2015 John Wiley & Sons Ltd

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of Northern Illinois University (HS13-0149). The funding body has placed no restrictions on free access to or publication of the research data. The content is solely the responsibility of the authors and does not necessarily represent the official views of Northern Illinois University. The authors are grateful for the support and assistance of our colleagues from Northern Illinois University, including Aimee Prawitz, Jinsook Kim and Samantha Brown.

Conflict of Interest There are no conflict of interests to report.

Correspondence Any correspondence should be directed to Jennifer A. Gray, School of Nursing and Health Studies, Northern Illinois University, 250 Wirtz Hall, DeKalb, IL 60115, USA (e-mail: [email protected]).

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Perspectives of US Direct Care Workers on the Grief Process of Persons with Intellectual and Developmental Disabilities: Implications for Practice.

The study explored the grief process of persons with intellectual and developmental disabilities (PWIDDs) as perceived by direct care workers (DCWs) a...
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