Inequalities in health care and other risk factors mean that children with intellectual disabilities are more likely to predecease their parents. Research on the effects on family members when a child with intellectual disability dies is sparse. In the present review, the authors describe 5 studies of bereavement in intellectual disability and then turn to general parental bereavement research to inform the field of intellectual disability. Questions for future research and some implications for services and professionals are discussed. In particular, professionals should be aware of dissatisfaction with care pre-loss, disenfranchised grief, and post-loss support needs of family members.
Researchers who focus on families of people with an intellectual disability (ID) have tended to explore the negative psychosocial and physical effects that parenting a child with ID can have on parents and other family members. The majority of studies have focused on the increased risks associated with parenting a child with ID. Parents and caregivers have more mental health problems, higher parenting stress, and lower levels of social participation than parents of children without disabilities (Baker, Blacher, Crnic, & Edelbrock, 2002; Baker et al., 2003; Herring et al., 2006; Krauss, 1993; Lewis et al., 2006; Seltzer, Grennberg, Floyd, Pettee, & Hong, 2001; Shin et al., 2006; Sloper, Knussen, Turner, & Cunningham, 1991). In addition to increased care demands, medical needs, and behavior problems, families may face a number of challenges throughout the life of the individual with ID. These challenges include receiving a rare diagnosis (Dellve, Samuelsson, Tallborn, Fasth, & Hallberg, 2006), co-coordinating their child's services (Neely-Barnes & Marcenko, 2004; Schneider, Wedgewood, Llewellyn, & McConnell, 2006), conflict over life transitions and independence (Williams & Robinson, 2001), the changing of family roles over time (Schneider et al., 2006), and concern for the future (Parker, 1996). These issues are demanding, and their constantly changing status may add to the stress felt by family members (Parker, 1996; Thorin, Yovanoff, & Irvin, 1996).
This negative focus seems to reflect the reality of the challenges of raising a child with ID. Recently, there has been an increased interest in the positive aspects and outcomes of raising a child with ID, which are considerable and independent of negative experiences (e.g., Glidden & Johnson, 1999; Hastings & Taunt, 2002; McCubbin & Patterson, 1983). That is, positive and negative outcomes may occur concurrently. Thus, any research concerning families of children with ID should explore both positive and negative aspects.
Although recent research has shown that the life expectancy of a child with ID continues to be lower than that of a typically developing child, the potential additional impact of this on families has received little research attention to date. Research investigating deaths of people with ID between 1984 and 1993 in the state of New York found that the life expectancy of men with an ID was 63.3 years, with women living an average of 66.9 years (Janicki, Dalton, Henderson, & Davidson, 1999); the corresponding statistics for those with a specific diagnosis of Down syndrome were 54.4 years and 57.4 years, respectively. These data contrast with the 1992 life expectancy data for a healthy population in New York, which were 65.8 years for men and 74.1 years for women (Janicki et al., 1999). More recent research has provided evidence of the increased longevity of individuals with ID (Bittles & Glasson, 2004; Hogg, Lucchino, Wang, & Janicki, 2001; Hussein & Manthorpe, 2005; World Health Organization [WHO], 2000). However, these most recent statistics suggest that people with ID may die between two and six years earlier than their peers in the general population, with people having Down syndrome dying up to 17 years earlier than their peers in the general population.
In addition, individuals with ID may have a much shorter life expectancy due to life-limiting syndromes (e.g., mucopolysaccharide disorders, lissencephaly, or Patau's syndrome) and because they are at an increased risk of suffering from various physical and psychological health complaints that are correlated with, but not necessarily attributable to, their ID. These problems include epilepsy (Morgan, Baxter, & Kerr, 2003), cardiac disease (Hayes et al., 1997), early onset of Alzheimer's Type 1 (Bush & Beail, 2004), mental health problems (Matson & Sevin, 1994), and osteoporosis (Wagemans, Fiolet, van der Linden, & Menheere, 1998). People with ID therefore have an increased need for access to adequate health care services, a need that is not always met (A. Cook & Lennox, 2000; Hayden, Kim, & DePaepe, 2005; Jansen, Krol, Groothoff, & Post, 2004; Melville et al., 2005; Ouellette-Kuntz, 2005; Scheepers et al., 2005; Sowney & Barr, 2004, 2006; Sutherland, Couch, & Iacono, 2002; Van Schrojenstein Lantman-de Valk, 2005). In addition, life-extending technologies are enabling children with life-limiting conditions to survive into adulthood (Feudtner et al., 2001), but transitions to adult services are often not adequately young-person centered or adult services for particular medical conditions may be nonexistent. This unmet health need, coupled with a lack of expertise among professionals, could contribute further to the risk of premature death faced by people with ID. As a consequence, there is also a greater risk that people with ID will predecease their parents, although precise statistics as to the likelihood of this event have yet to be reported.
The purpose of this review is to draw together available theory and evidence from both within and outside of the ID research field to help develop an understanding of the experiences of bereaved parents of children with ID. In the review, we investigate bereavement responses specifically in parents who lost a child with ID. Few direct data in this area exist. Therefore, the review includes a description not only of the small number of studies on bereavement and ID but also the larger number of studies focused on parental bereavement in general. We use the broader literature on parental bereavement to inform our description of future research priorities for bereavement in parents of children with ID.
General Parental Bereavement
“Bereavement is understood to refer to the objective situation of having lost someone significant” (Stroebe, Hansson, Stroebe, & Schut, 2001, p. 6). Grief is the term for the general emotional reaction to the loss of a loved one through death, which incorporates psychological and physical manifestations (Stroebe et al., 2001). Most people face the death of family members and friends across the course of the lifespan, and, although bereavement is associated with a period of intense distress, most people also come to terms with their loss over time. Those whose grieving deviates from the norm may be identified as experiencing pathological grief, also called complicated, atypical, neurotic, or unresolved grief (Prigerson et al., 1995). Although there are as yet no agreed diagnostic criteria, complicated grief is commonly described as deviating from (culturally) normal grief in terms of the time course or the intensity of specific or general symptoms such as emotional or physical reactions (Stroebe et al., 2001). The loss of a child typically results in grief that is longer lasting, more intense, and more painful than any other loss (Leahy, 1993; Rando, 1985; Rubin & Malkinson, 2001). The death of a child is an unexpected experience, which may violate the natural order of the universe, forcing parents to question their beliefs and search for meaning in their experience (Malkinson & Bar-Tur, 2004–2005).
The outcomes of bereavement are most often measured in terms of grief and anxiety and depression scores. The most widely reported outcomes for parents relate to increased psychological morbidity (Boyle, Vance, Najman, & Thearle, 1996; Goodenough, Drew, Higgins, & Trethewie, 2004; Kreicbergs, Valdimarsdottir, Onelov, Henter, & Steineck, 2004; Leahy, 1993; Martinson, Davies, & McClowry, 1991; Wijngaards-de Meij et al., 2005). The parental bereavement literature has also identified bereaved parents as at increased risk of anger (Drenovsky, 1994), guilt (Miles & Demi, 1992; Saiki-Craighill, 2002; Surkan et al., 2006), intrusive memories (Horowitz, Wilner, & Alvarez, 1979), social isolation and loneliness (Laakso & Paunonen-Ilmonen, 2001; Monk, Houck, & Shear, 2006), problems in marital and other relationships (Schwab, 1992), financial hardship (Corden, Sloper, & Sainsbury, 2002), physical reactions (Aho, Tarkka, Astedt-Kurki, & Kaunonen, 2006), cardiovascular disease (Li, Hansen, Mortensen, & Olsen, 2002), and increased mortality (Li, Precht, Mortensen, & Olsen, 2003). These are therefore potential outcomes for parents who lose a child with ID; however, the extent to which these outcomes may be predicted is as yet unclear.
Predictors of Parental Bereavement
Frequently reported determinants of the severity of parental grief include gender, mode of death, age of the deceased, number of children in the family, support sources, coping strategies, and positive experiences. Not all of these factors have been addressed by research into bereavement and ID, and findings related to these issues in the general parental bereavement literature are reviewed in turn.
Gender differences on measures of grief and psychological symptoms have been widely reported in parents who lose a child, particularly to cancer, with mothers reporting more intense and longer lasting grief reactions than fathers (Goodenough et al., 2004; Kreicbergs et al., 2004; Rando, 1983; Schwab, 1996; Shanfield, Benjamin, & Swain, 1984; Sidmore, 1999–2000; Sirkiä, Saarinen-Pihkala, & Hovi, 2000; Vance, Boyle, Najman, & Thearle, 1995; Wijngaards-de Meij et al., 2005). Gender differences have also been found with regard to effects of place of death on grief. For example, in one study, mothers reported more depression, anxiety, and stress when their child died from cancer in a hospital rather than at home (Goodenough et al., 2004).
Findings on gender differences, although commonly reported, have been the subject of substantial critical analyses. Lang and Gottlieb (1993) argued that gender differences on grief scores may be in part due to measurement issues. Specifically, commonly used measures have been developed using predominantly female reports. The Revised Grief Experience Inventory (Lev, Munro, & McCorkle, 1993), for example, was developed using a sample that was 78% female, and it may be the case that measures are more sensitive to mothers' grief expressions than to fathers' experiences. Findings in research into parental bereavement and cancer have supported this critical position, highlighting the potential additional impact of the different roles fathers and mothers may adopt in terminal care (Rando, 1983). Gender differences should, therefore, be interpreted with caution.
Research findings have indicated that differences in mode of death result in different responses in parents. For example, parents bereaved by sudden infant death syndrome (SIDS) obtained significantly lower scores on measures of psychosocial and physical complaints, posttraumatic stress, and grief reactions than parents bereaved by suicide or accident (Dyregrov, Nordanger, & Dyregrov, 2003; Wijngaards-de Meij et al., 2005). Intrusive memories, an often-reported symptom of pathological grief, are less common for parents bereaved by SIDS compared with parents bereaved by accident or suicide (Dyregrov et al., 2003). Conversely, Dyregrov et al. (2003) found that self-isolation was the best predictor for psychosocial distress across three bereaved groups (SIDS, accident, and suicide), and suicidal ideation did not differ significantly in survivors of accident, homicide, and suicide (Murphy, Tapper, Johnson, & Lohan, 2005). These findings indicate the usefulness of comparing parents bereaved under different circumstances and the importance of identifying subgroups of bereaved parents who are at particular risk of negative consequences.
Mode of death effects also varies further. For example, parents, particularly mothers, who experienced sudden, as opposed to expected, loss reported more intense grief reactions (Hazzard, Weston, & Gutterres, 1992; Lang & Gottlieb, 1993; Meert, Thurston, & Thomas, 2001; Sanders, 1982– 1983; Seecharan, Andresen, Norris, & Toce, 2004). These findings suggest that time to prepare for loss or anticipatory grief may have significant benefits for parents (Kreicbergs et al., 2004; Rando, 1983; Seecharan et al., 2004; Shanfield et al., 1984). The clarity of the disease process may also impact the parents' postloss functioning. For example, parents who lost a child to SIDS reported feeling that a formal understanding of the cause of death would lessen feelings of guilt (Rubin & Malkinson, 2001).
The death of a child at any age interrupts the normal life course, and the loss of a child at various points in the lifecycle will hold different consequences for parents. An untimely event such as the death of a child, following a lifetime of orderliness, also impacts on intergenerational relationships, caregiving, and support frameworks and may lead to feelings of guilt and unnatural survivorship (Cacace & Williamson, 1996; Moss, Lesher, & Moss, 1986; Rubin & Malkinson, 2001). Related to the issue of the age of the child is that of parenthood. Parenthood is a role that ends with the death of the parent, not the child, and the loss requires reinterpretation of parental role and reorganization of family systems (Dean, McClement, Bond, Daeninck, & Nelson, 2005; DeVries, Dalla Lana, & Falck, 1994). These issues relating to the age of the child at death and the additional impact of the loss of parental role have been investigated by parental bereavement research.
The effect of the age at which a child dies from cancer has been associated with variation in parents' postloss psychological functioning, with the loss of an older child predicting increased risk of psychological morbidity (Goodenough et al., 2004; Kreicbergs et al., 2004; Shanfield et al., 1984). In addition, the potential impact of having other children in the family has been investigated. Wijngaards-de Meij et al. (2005) found that parents grieved less and reported less depression when there were other children remaining in the family. Li et al. (2003) found slightly higher mortality in parents who lost their only child, suggesting that parents with other children were more able to adjust to their loss, perhaps by receiving support from their surviving children.
The importance of active and emotional postloss support for bereaved individuals is well documented (Stroebe et al., 2001). In particular, spousal support is important, with marital intimacy negatively related to grief outcomes (Lang & Gottlieb, 1993; Oliver, 1999; Schwab, 1992). Research into parental bereavement through cancer has highlighted the following: (a) the support needs of parents throughout the child's illness (Davies et al., 2004; Papadatou, Yfantopoulos, & Kosmidis, 1996; Spinetta, Swarner, & Sheposh, 1981), (b) that dissatisfaction with support provided by health care services is associated with increased symptoms of depression (Surkan et al., 2006), and (c) the potential harmful effects of support. Rando (1983) found that more support during the terminal phase of cancer predicted poorer parental adjustment following death as measured by the Parental Experience Assessment Form (Rando, 1979). It could be that what was supportive prior to death no longer constituted support afterwards (Rando, 1983) or that the support was not as helpful as potential comforters thought it would be (Thompson & Range, 1992), emphasizing the importance of appropriate support for parents. Sources of support and comfort deemed helpful by bereaved parents include parents in the same situation (Cacace & Williamson, 1996), in particular, “Seeing others cope with grief gave mothers confidence in their own survival” (Laakso & Paunonen-Ilmonen, 2002, p. 181).
The theme of dissatisfaction with support and services has been explored by researchers focusing on life-limiting illness in children (Davies et al., 2004; Laakso & Paunonen-Ilmonen, 2001; Meert et al., 2001; Papadatou et al., 1996; Saiki-Craighill, 2002; Steele, 2000; Surkan et al., 2006; Wood & Milo, 2001; Wray & Wray, 2004) and indicates potential differences between the medical care experiences of parents who lose their children to illness rather than SIDS or accident. Dissatisfaction with care tends to be associated with professionals' uncaring attitudes and perceived lack of expertise and with inadequate symptom relief for the child. Parents who lost adult children reported feeling excluded by the health care team and without a role in their child's treatment (Dean et al., 2005). In addition, parents may experience financial impacts, including the immediate loss of social security payments following the death of a child with considerable medical needs (Corden et al., 2002).
Related to these complaints about medical care are difficulties accessing appropriate palliative care services, which may pose problems for parents. Predicting length of survival for individuals with various diseases and conditions that result in premature death is difficult; consequently, individuals and families have difficulty accessing appropriate concurrent life-prolonging and palliative care services (Graham & Robinson, 2005; Nelson et al., 2000), particularly child-focused models (Donnelly, Huff, Lindsey, McMahon, & Schumacher, 2005). Improved health care in general has resulted in children with life-limiting conditions living longer and often into adulthood, and transitions between these services have been found to be problematic (Feudtner et al., 2001; O'Leary, Flynn, MacCallion, Walsh, & McQuillan, 2006). These preloss experiences may be unique to parents who lose a child to chronic illness, and, given the findings in the ID literature regarding difficulties that individuals with ID encounter accessing medical services (e.g., Jansen et al., 2004), satisfaction with care may also be problematic for parents of children with ID.
Coping researchers traditionally divide coping by gender, with female coping considered largely emotion focused compared with male problem-focused strategies (Carver, 1989). This belief has been supported by some research findings in parental bereavement (Aho et al., 2006; J. A. Cook, 1988; Kavanaugh, 1997; Lewis et al., 2006) but has yet to be extensively investigated, and more complex relationships among strategies may be responsible for differences in grief reactions (Anderson, Marwit, & Vandenberg, 2005). The area of religion as a source of support and a coping mechanism is one that has produced conflicting findings in the field of parental bereavement research. McIntosh, Cohen-Silver, and Wortman (1993) reported that greater religious participation was related to increased perception of social support and greater meaning found in the loss. In contrast, Winjngaards-de Meij et al. (2005) found that increased religious faith correlated with a risk of depression after bereavement, for bereaved parents. Stroebe (2004) outlined possible reasons for these conflicting findings, highlighting the need to use scientific principles and criteria in identifying the role of religion in coping with bereavement in general. Current research tends to overlook, for example, the potential for both positive and negative effects of religion and the existence of nonreligious ways of coping that are similar to ways traditionally seen as religious methods but that are not connected to a religious belief system (e.g., belief in the afterlife). To accurately understand the mechanisms involved with religion and bereavement, scientific criteria, such as the inclusion of both nonreligious and nonbereaved controls and comparisons across groups with widely varying religious beliefs, should also be used more stringently in research (Stroebe, 2004).
Not all parents experience only negative outcomes in response to bereavement. Researchers have reported various positive outcomes for bereaved parents, such as gaining strength, relief, and joy that their child is no longer in physical pain; personal growth; closer relationships; and changes in life goals (Laakso & Paunonen-Ilmonen, 2001; Saiki-Craighill, 2002; Schaefer & Moos, 2001; Shanfield et al., 1984; Znoj & Keller, 2002). Positive caregiving experiences have been highlighted as strong predictors of positive bereavement outcomes following caregiving (Schulz, Newsom, Fleissener, Decamp, & Nieboer, 1997). However, it is generally agreed that parents, more than other bereaved individuals, find it difficult to find meaning in their loss (Cleiren, Diekstra, Kerkhof, & Van der Wal, 1994), and mothers may struggle with this more than fathers (Kavanaugh, 1997).
In summary, the grieving experiences of parents vary according to gender, age of child, mode of death, support, satisfaction with care, and religious beliefs, among other factors, and all of these are also potentially important factors for parents whose child with an ID dies. We conducted an extensive literature search and located only five studies of familial loss of an individual with IDs. These studies are summarized in Table 1 and are discussed in detail below.
Loss of a Child With ID
Research of bereavement in parents of children with ID has adopted qualitative methods to date. Milo's (1997) research involved semistructured interviews with 8 mothers, bereaved by the death of a child with ID, who also completed the Grief Experience Inventory (GEI; Sanders, Mauger, & Strong, 1978). The mothers' GEI profiles were not significantly different to a bereaved reference group. An analysis of the interviews using constant comparative analysis (Glaser & Strauss, 1967) revealed eight major findings, most notably that mothers felt they had to justify their love for their child to others (disenfranchisement) and that they had experienced and worked through two difficult transitions: first when their child was diagnosed with an ID and second when their child died. Results showed, however, that the mothers were able to restore a sense of well being in the world initially after the birth or diagnosis of their child with ID and again after their child's death. Mothers also reported that the experience of parenting and then losing a child with ID had transformed them in many positive ways (e.g., they had confidence and an ability to speak up for themselves) and had been one of the defining experiences of their lives, which had the power to profoundly shift their sense of identity, worldview, relationships, spirituality, and priorities.
Mothers successfully used cognitive coping strategies (e.g., construing benefit or gains, finding meaning, reestablishing control) to restore their assumptive worldview; mothers who used these strategies earlier and more extensively were more able to cope than mothers who delayed using them or did not use them extensively. The mothers also used problem-focused coping by changing their informal support networks to surround themselves with people of similar values who accepted their child unconditionally and, in the process, distanced themselves from both friends and family who were unsupportive. Milo (1997) found, in addition, that not all experiences fit the typical pattern, with 2 mothers in particular whose child received no clear or a late diagnosis showing noticeably different outcomes to the others in terms of the positive experiences and personal change they attributed to their child. One mother struggled to report hers as a positive experience and had a much higher grief score than the rest of the group, whereas the other mother scored significantly lower on the grief measure compared with the others. Milo recommended that a clear diagnosis of ID and prognosis of potential progress, development, and survival be delivered as early as possible to aid acceptance by parents, particularly in cases of children with severe disabilities. She also suggested that professionals should be trained to encourage parents to use cognitive coping to aid them in finding meaning in their experience.
Milo (Wood & Milo, 2001) also undertook a second study investigating the experiences of bereaved fathers of children with ID. The study once again used the GEI, the semistructured interview used by Milo (1997), and constant comparative analysis (Glaser & Strauss, 1967). Eight fathers participated, three of whom had partners who participated in the original study. The fathers' GEI scores showed no obvious differences compared with a reference group of bereaved parents and even compared with the group of mothers from the earlier research. Overall, the fathers showed less consistency in the experiences they reported in the interviews than mothers, although several areas of focus did emerge from the research.
Fathers tended to report that their grieving and coping experiences were a reflection of who they were; the death itself had not changed them as a person. Instead, personal change was related more to their child's birth and diagnosis. Many of the fathers described a double loss, which they initially experienced when they learned about their child's disability, with a second blow associated with their child's death. Benefits found in the experience included the fact that the death was reported as a relief for some of the fathers—relief that their child would not have to suffer further and that they no longer faced the difficulties of raising a child with a disability. Some of the fathers reported having distanced themselves from their children, and this may have served as a type of anticipatory grieving (Wood & Milo, 2001). Maintaining a normal family life was important to the fathers and they tended to take an active approach to coping by taking action and keeping busy. Activities included researching medical literature, focusing on work, and engaging in sports. Fathers valued professionals who were honest and straightforward with them throughout, but they experienced a lack of support and a sense of isolation following the death of their child. They felt they grieved significantly differently than their wives and reported difficulty with gender stereotypes surrounding grief and bereavement. Fathers struggled with expectations that they would be strong for their families and return to work and felt that professionals did not acknowledge male grief as being as profound as female grief.
Todd's (2007) account of qualitative interviews with the bereaved parents of 13 children with ID (5 couples and 8 mothers) in the United Kingdom similarly used a constant comparative approach (Glaser & Strauss, 1967) and concurred with findings from the United States with regard to disenfranchised grief, the loss of identity, and positive outcomes for parents (Milo, 1997; Wood & Milo, 2001). Todd (2007) also indicated that the bereavement experiences of these parents mirror those of people with ID themselves, as the loss is likely to be compounded by other losses and likely to be a form of disenfranchised loss. The study also discussed the parent's lack of opportunity to discuss their grief, which resulted in a “socially imposed” silent grief (Todd, 2007, p. 646) and highlighted the ongoing support needs of these bereaved parents. However, the lack of information on the childrens' conditions, how they died, and whether the quotes provided were a reflection of the experiences of fathers, mothers, or both, limit the comparisons that can be made from Todd's research with regard to how diverse or similar the participants were and how the circumstances of the deaths compare with those of the bereaved parents in other studies.
The two other ID research studies focused on different samples. Schormans (2004) interviewed 8 bereaved foster parents of children with multiple disabilities and used grounded theory methodology (Charmaz, 1995; Strauss & Corbin, 1998) to analyze the data. These parents were a unique group among foster parents, as all of the foster placements had been planned as permanent, long-term placements. The loss of the parent–child bond they had shared with the child was a major theme in all of the parents' stories. The parents tended to identify themselves as good parents, and all reported that their desire to parent had led them to foster, a theme which was central to their experiences. Fostering provided a source of pride, a sense of identity, increased self-esteem, and a feeling that providing a happy home was a worthwhile objective. The foster parents reported that the bereavement experience affected them in various ways, such as having an impact on their emotional health and resulting in sleep disturbances. Other themes that arose included the persistent nature of grief, age of the child as irrelevant (the children ranged in age from 3 months to 22 years at death), and benefit finding, all of which make the grief and impact felt by foster parents comparable with that experienced by birth parents on the loss of their child. Like the parents in the studies conducted by Todd (2007), Wood and Milo (2001), and Milo (1997), the foster parents felt that their experiences were viewed by some as less significant because the child had a disability.
The final ID-related study described in Table 1 is a qualitative investigation, which used content analysis (Strauss & Corbin, 1990) to investigate the experiences of five siblings in one family who lost a sister with cerebral palsy and ID (Rodger & Tooth, 2004). Among the factors that influenced their reactions to growing up with their sister were inspiration and guidance from their mother, large family size, coping through study or time away from the family, and supportive friendships. These factors were related to the siblings being more accepting of disability, more responsible, and more mature. They also found benefit in giving themselves a separate life outside the home and developed closer friendships with their other siblings.
After their sister's death, there was a common theme of grieving about not just the death but about the sister's illness, disability, and what could have been. The siblings also criticized people's patronizing platitudes and attitudes that the death was for the best, although simultaneously the siblings reported a sense of relief that their sister was no longer suffering and a satisfaction that they had done all they could. The siblings found meaning in the death through their religious beliefs, and all stated that having spent time with their sister during her life, spending time with her around the time of her death, and saying goodbye had helped them cope with the death. Other coping strategies used included sibling support, the large family network, looking at photographs, going over happy memories, and having friends to talk to. The siblings all found benefit in their loss, stating that their experience had profoundly affected their lives, making them “better people” (Rodger & Tooth, 2004, p. 67). Their experience had made their priorities clearer and affected their career choices, although none chose to work directly with children with a disability. The siblings developed insight and perspective because of their experiences, and the study highlights the importance of support networks for bereaved siblings.
To summarize, the studies on parents and other family members who were bereaved by the death of a child with ID found no gender differences with regard to scores on grief measures, but mothers in Milo's (1997) study reported using cognitive coping strategies, whereas fathers tended to use more active coping methods (Wood & Milo, 2001), as has been found previously in bereavement coping research (Kavanaugh, 1997). All five studies reported benefit finding in loss, including relief that the individual was no longer in physical pain and gains made through parenting a child with an ID. Disenfranchised grief, grief that occurs when there is a failure to recognize that a death has been experienced as a significant loss (Attig, 2004), was reported. Mothers felt the love for their child was not recognized as valid by others, whereas fathers felt their experiences were not acknowledged as being as significant as those of their female partners. Foster parents and siblings also reported that their experiences were viewed as less significant because the deceased child had a disability. Participants reported unhelpful attitudes on the part of society in general, and the need for satisfactory relationships with health professionals were central to the experiences of some family members.
Conclusions and Implications
This review has outlined the experiences of bereaved parents of children with ID and other bereaved parents; the limited research thus far has not found evidence of differences between these groups of parents on measures of grief (Milo, 1997; Wood & Milo, 2001). Comparisons are difficult, however, given the limited number of studies and the variety of factors investigated and measures used in general parental bereavement research. For example, measures of depression are used as an estimate of grief in many parental bereavement studies. Prigerson et al. (1995) found that complicated grief is distinct from bereavement-related depression, an issue also supported by later research (Goodenough et al., 2004; Wijngaards-de Meij et al., 2005). Parental bereavement studies also tended to focus on one or two predictors, leading to potential confounding effects of unexamined variables. These limitations and potential gender effects should be addressed in future research with parents who are bereaved because of loss of a child with ID.
Research described in this review suggests that parents who lose a child unexpectedly may rate their grief reactions higher than those who anticipated the death of their child. Satisfaction with care was identified as a theme important to all families who lost a child to illness, whereas disenfranchised grief was a theme more often raised by families who had lost a child with ID. The loss of a child with an ID (whether in childhood or adulthood) differs from the loss of a child without ID in terms of parental expectations for their children's future and their caregiving roles but may also differ considerably in terms of the circumstances of the loss. To varying degrees, parents may lose an intensive caregiving role, support group membership, and companionship. Furthermore, the death of a dependent child may take with it fears and apprehension parents once had about their child's future (Wood & Milo, 2001), resulting in feelings of relief, which may be difficult for parents to contemplate. Future research into the impact of preparation, care, and information received by the child and their family could give valuable verification of the need for good relationships between parents and health care providers, the effects of anticipatory grief, and the effects of the age of the child on parental grief; research could also help identify potentially at-risk families.
One particular area of bereavement and ID that should be attended to by future research is that of the potential impact of ethnicity on caregiving and bereavement processes. Research into the impact of childhood disability on the family suggests that, depending on ethnic background, families respond differently to increased medical needs and provision of services that accompany a child with ID (Aranda & Knight, 1997; Flynt & Wood, 1989; Neely-Barnes & Marcenko, 2004; Pruchno, Patrick, & Burnant, 1997). Families who lose a child with ID are a racially diverse group and pre-existing differences in religious beliefs, use of coping strategies, or service use may prompt different bereavement outcomes in families.
Caregiving and parental bereavement are under-researched areas, whereas caregiving in HIV and dementia has been intensively researched in recent years. In both fields, a combination of structured interviews and questionnaires are typically used to better understand the processes at work. Research with bereaved caregivers of people with AIDS highlights the coexistence of positive and negative psychological states postloss (Moskowitz, Folkman, & Acree, 2003), and finding positive meaning in AIDS caregiving has been reported to predict less postloss depression (Folkman, Chesney, Collette, Boccellari, & Cooke, 1996). These findings have had vital implications for the development of interventions for caregivers who are bereaved due losing a friend or family member with AIDS (e.g., Rogers, Hansen, Levy, Tate, & Sikkema, 2005). Similarly, positive perceptions of parenting a child with an ID (Hastings & Taunt, 2002) may play a role in parental bereavement and adjustment. Parallel research in the field of ID could equally inform the development of interventions for bereaved caregivers of people with ID.
Prior to embarking on further research in the area of parental bereavement and ID, a number of methodological issues should be noted. First, research into parental bereavement and ID should use methods and measures consistently that were used by previous, similar studies to aid comparison and interpretation of findings. Second, the complex and unique nature of the situations experienced by families who lose a family member with ID indicates a likely high degree of between-families variability that should be represented and accounted for in future research. To investigate all the factors that underlie grief reactions following loss, a qualitative approach could be particularly informative. Qualitative research methods would give parents an opportunity to comment on areas that may otherwise not be discussed. Such methods have been used previously to investigate the experiences of mothers of children with ID and their interactions with professionals, where mothers reported their roles were not being considered, they were being scrutinized, and professionals discounted the input of parents and their experiences (Parker, 1996; Reeves, Timmons, & Dampier, 2006; Todd & Jones, 2003). Caregivers respond positively to the opportunity to share details of their lives as caregivers, and research has indicated that bereaved parents associated their positive experiences of research with an indepth interview format, an opportunity to tell their complete story, and a hope they might help others (Dyregrov, 2004). As well as providing a more sensitive method of conducting research with bereaved parents of children with ID, a qualitative interview could potentially make participation in research a positive experience. Qualitative findings could be complemented with the use of standard measures previously used in bereavement and ID research, including grief measures such as the GEI (Sanders et al., 1978).
Research with families bereaved from loss of a child with ID has suggested that service providers do not always recognize the needs of parents who lose a child with an ID. Reports of dissatisfaction with care and disenfranchised grief point to a need to increase staff awareness of parents' and other relatives' needs, both pre-and postloss. Turnbull and Stowe (2001) outlined five models for thinking about disability, demonstrating the importance of understanding the varying perspectives on disability held by people with disabilities, caregivers, and policymakers. This issue has been addressed by chronic illness research (Hays et al., 2006; Hurwitz, Duncan, & Wolfe, 2004; Kazak & Nachman, 1991; Koocher, 1994; Morison, Bromfield, & Cameron, 2003; Speice et al., 2000), and findings and guidelines on patient–provider dialogue, family involvement in care, and postloss familial support from this area might inform future research in ID and parental bereavement.
Service providers may also benefit from education about the risks of disenfranchised grief. Invalidating attitudes may have a direct effect on the support families are offered and the support they feel they are entitled to both pre- and post-loss. Mothers of children with ID have reported they did not feel as though they were treated as “ordinary” mothers (Todd & Jones, 2003, p. 241) and suffered a loss of role. Education on the experiences of bereaved parents of children with ID may also make professionals mindful of the possibility that family members who lose a child with ID experience positive as well as negative reactions. Additional research into benefit finding in loss and the effects and origins of disenfranchising attitudes could inform staff training and pre- and post-bereavement support for families.
The research on parental bereavement and ID has indicated that bereaved parents and siblings find several sources of postloss support to be helpful, including formal and informal support groups, bereavement counseling, and continued contact with service providers, such as service providers attending the funeral and continuing to invite family members to events. Professionals providing support should be aware that family members have different needs, and perceptions of events and gender differences specifically may affect expressions of grief and the type of support required. Cognitive coping strategies may help mothers find meaning in their experience. Likewise, active coping could aid fathers coping with grief at the time of diagnosis and again when the child dies. Future research should investigate the extent to which supports are available to, and used by, families and how effective they can be in terms of both psychological and physical health postloss.
Parental grief following the loss of a child with ID is often intense and long-lasting but may be helped with appropriate support, good patient–provider relationships, and the use of coping strategies. Parents may also find benefit in their otherwise traumatic experiences. Additional research is required to better understand the mental and physical health implications of bereavement, the possible implications of the age of the child who dies, and potential protective factors such as the presence of remaining children in the family. Investigation of these and other topic areas could greatly improve knowledge of the experiences and pre- and post-loss needs of families who lose a child with an ID.
Preparation of this manuscript was supported by Mencap Cymru, The European Social Fund, and Bangor University.
Deirdre E. Reilly, PhD (firstname.lastname@example.org), and Richard P. Hastings, PhD, School of Psychology, University of Wales, Bangor, United Kingdom. Frances L. Vaughan, PhD, ClinPsyD, School of Psychology, University of Wales, Bangor, United Kingdom, and North Wales Brain Injury Service, Colwyn Bay, United Kingdom. Jaci C. Huws, RN, MA, School of Healthcare Sciences, University of Wales, Bangor, United Kingdom