Abstract

Individuals with Down syndrome are at increased risk of congenital heart conditions (CHCs), and mortality is higher in people with Down syndrome and a CHC than those without (J. C. Vis et al., 2009). As a consequence, parents of children with Down syndrome and a CHC are more likely to outlive their child. In this research, semistructured interviews were used to explore the experiences of 6 couples whose child with Down syndrome and a CHC had died. The interviews were analyzed qualitatively using interpretative phenomenological analysis (IPA), and 4 themes emerged: dilemmas associated with the dual diagnosis; treatment decisions during the life and the death of their child (“We had to make a decision”); ways couples coped when bereaved (“We weren't really going through it together”); and ripples from the child's life. There was a high degree of similarity of experience within couples. Differences between couples existed in their experiences of coping and supporting each other. Practical implications include the importance of considering the specific needs of couples, individuals, and fathers within partnerships.

Several research reports focus on the experience of parenting a child with Down syndrome compared with children with other developmental disorders (e.g., Abbeduto et al., 2004; Poehlmann, Clements, Abbeduto, & Farsad, 2005). Some data are consistent with the notion of a “Down syndrome advantage,” whereby parents of children with Down syndrome report better outcomes than do parents of children with other disabilities. Although this advantage is much debated, the most recent research supports this hypothesis (Corrice & Glidden, 2009), with a variety of advantages found for families of children with Down syndrome, including lower divorce rates for families of children born between 1990 and 2002 (Urbano & Hodapp, 2007), less family conflict, and more mother–child closeness when males were 10–23 years old (Lewis et al., 2006). However, two areas that have received little attention are the joint experiences of couples raising a child with Down syndrome and parental experiences associated with particular life events relating to the child with Down syndrome. In this article, we investigate the reactions of couples when their child with Down syndrome dies.

Within couples raising children with Down syndrome, mothers and fathers have been found to use different ways of coping and finding support, with mothers showing higher levels of social support seeking, suppression of competing activities, turning to religion, and emotional expression than fathers (Spangenberg & Theron, 2001; A. Sullivan, 2002). Couples also experience different sources of stress. Whereas fathers' stress related to the child's diagnosis of Down syndrome, mothers' stress has been found to be related to parental role, involvement in child care, and father's stress (Cuskelly, Jobling, Chant, Bower, & Hayes, 2002; Roach, Orsmond, & Barratt, 1999). Pelchat, Lefebvre, and Perrault (2003) suggested that the expectations of fathers within families may be more specific and more difficult to fulfill than mothers'. For example, in families of children 2–5 years old, fathers felt a greater need for support from male members of their extended families (Pelchat et al., 2003). Pelchat and colleagues proposed that difficulties typically encountered by families are made more arduous by some of the additional stressors when raising a child with Down syndrome. For example, the child's care needs may mean that a considerable amount of time is consumed arranging specialist appointments and services (Pelchat et al., 2003).

Although the challenges faced by families of a child with a disability across the lifespan are recognized by research, this has largely been confined to maternal report of the adolescent years (Schneider, Wedgewood, Llewellyn, & McConnell, 2006; Todd & Jones, 2005). Research into parenting and Down syndrome across the life span is incomplete in several areas of knowledge. For example, researchers have rarely explored the experiences of fathers of children with Down syndrome. The premature death of the child with Down syndrome (whether as a child or adult) has the potential for an irrevocable impact on family life. Although there are data suggesting that this risk is significant, published research has not addressed the experiences of family members adjusting to this loss.

There is widespread recognition of the increased health risks faced by people with Down syndrome (S. G. Sullivan, Hussain, Glasson, & Bittles, 2007) and their unmet health care needs (Melville et al., 2005). Almost 50% of children born with Down syndrome are also born with a congenital heart condition (CHC; American Academy of Pediatrics [AAP], 2001). All CHCs are, to varying degrees, operable, but CHCs that remain partially remediated or uncorrected expose individuals to the possibility of additional health complications. As a result, children with Down syndrome and a CHC under the age of 10 years are admitted to the hospital twice as often as other children with Down syndrome (Abbeduto et al., 2004; Frid, Anneren, Rasmussen, Sundelin, & Drott, 2002), and a current cardiac problem in the child is related to poorer maternal physical health (Bourke et al., 2008). Although mortality for infants with Down syndrome and CHC has been declining (Frid, Drott, Olausson, Sundelin, & Anneren, 2004), mortality within the Down syndrome population is higher in individuals with CHC (Yang, Rasmussen, & Friedman, 2002), and, therefore, parents are more likely to outlive their child than parents of children with other disabilities. Precise statistics as to the likelihood of this event have yet to be reported.

Parental bereavement research within the general population has shown that the loss of a child through illness may result in wide-ranging psychological implications for parents: for example, more symptoms of anxiety and depression when the child is 9–23 years old (Kreicbergs, Valdimarsdottir, Onelov, Henter, & Steineck, 2004; Leahy, 1993). In terms of gender differences, comparisons within bereaved couples have found higher maternal grief (Goodenough, Drew, Higgins, & Trethewie, 2004; Schwab, 1996; Wijngaards-de Meij et al., 2005). However, others have questioned the accuracy of particular measures of grief (Lang & Gottlieb, 1993), suggesting that measures are not adept at measuring male grief. In addition, the reactions of a couple to the loss of their child will constitute much more than a collection of individual grief symptoms (Wijngaards-de Meij et al., 2008) and may include problems in the marital relationship (Schwab, 1992). Parents may lose support from their spouse and other sources (Rando, 1985) but may also gain from their experience, including acquiring increased personal strength, insight, and closer familial relationships (Laakso & Paunonen-Ilmonen, 2001).

Interpersonal factors have been investigated with regard to the impact of coping styles in bereaved couples. Wijngaards-de Meij et al. (2008) reported that, for couples who experienced the death of a child from birth to 29 years old, when wives displayed higher levels of coping aimed at rebuilding their lives after the loss of a child, their husbands displayed lower levels of depression and grief postloss. Other findings have shown that mothers take more time than fathers to recover and return to work when their child died from cancer (Sirkiä, Saarinen-Pihkala, & Hovi, 2000), and positive attitudes within couples about open communication were related to higher grief in the early stages of loss and lower grief in later stages (Kamm & Vandenberg, 2001). Although these studies provide some insight into parental bereavement and couples' experiences, the experiences of parents whose child with an intellectual disability dies are potentially qualitatively different to parents whose typically developing child dies (Reilly, Hastings, Vaughan, & Huws, 2008). For example, parents and foster parents whose child with an intellectual disability has died report disenfranchised grief; experience additional losses, including the loss of their self-defining caregiving role; and lack continued contact with the formerly supportive world of intellectual disability services (Milo, 1997; Reilly, Huws, Hastings, & Vaughan, 2008; Schormans, 2004; Todd, 2007; Wood & Milo, 2001).

For parents whose child with Down syndrome and a CHC dies, various factors may result in different grief experiences compared with bereaved parents whose child had Down syndrome but no CHC or had a different condition related to intellectual disability. Explanations offered for a possible “Down syndrome advantage” include maternal age, family income, and positive child characteristics (Seltzer, Krauss, & Taunematsu, 1993). When such issues are combined with cardiac conditions (Frid et al., 2002), there may be an impact on the bereavement experiences and the needs of parents of a child with Down syndrome and a CHC who has died.

In this study, we investigated, using qualitative methods, the experience of parenting a child with Down syndrome and a CHC from the perspective of bereaved couples. Previous research on bereavement in parents of people with intellectual disability has focused on the accounts of individual parents. In this study, we add to the published literature on this topic by examining the retrospective accounts of both partners in terms of how they constructed their experience of their child's birth, diagnosis, life, and death (at ≤ 18 years). In addition, we highlight potential similarities and differences that may occur between and within couples and how these ways of coping and sources of support might change pre- and postbereavement.

Method

Methodological Approach

Research in the area of parental bereavement and intellectual disability is emerging, and, given the limited knowledge available, qualitative methods may be best suited for investigating this particular event (Neimeyer & Hogan, 2001). Interpretative phenomenological analysis (IPA; Smith, Jarman, & Osborn, 1999) is a qualitative approach whereby the participant is deemed an expert on their own experience. By using methods of interpretative analysis, we uncovered central themes from participants' accounts of particular events. Themes that emerged may be common across participants or unique to individual accounts. This diversity in accounts is key to IPA, whereas other qualitative methods may suppress the diversity of participants' accounts (Jarrett, Payne, Turner, & Hillier, 1999). IPA captures how participants make sense of their experience by asking them to identify the symptoms, themes, practices, and outcomes that they feel characterize their loss.

Participant numbers in IPA studies vary from 1 to 30; however, studies typically focus on small samples of 6 to 8 individuals (Brocki & Wearden, 2006). The use of a small, somewhat homogeneous group allows in-depth examination of accounts, more easily allows the identification of patterns of similarity and differences, and helps avoid the loss of subtle differences among participants (Smith, Michie, Stephenson, & Quarrell, 2002). Various methods are used to ensure the themes are internally coherent and to maintain a level of quality in results, including credibility checks carried out by multiple researchers, discussion with the research team, peer review, consultation with the participants on the accuracy of the findings, and the use of a reflexive journal (Carradice, Shankland, & Beail, 2002; Elliott, Fischer, & Rennie, 1999).

Central to the IPA approach is the recognition of interviews as a product of an interaction between participant and researcher. Smith et al. (1999) have written extensively on the topic, exploring how the view of the researcher influences the emergence of themes. An additional central tenet is the necessity of this interpretative activity in making sense of the personal world of the participant (Reid, Flowers, & Larkin, 2005). These considerations led our decision to choose this method over other qualitative methods. In the current study, the primary researcher (D.R.) was a PhD student completing psychological research with families in which a child with an intellectual disability had died. She received training on ways of working with bereaved individuals and had access to supervision from a clinical psychologist throughout the study. The study was approved by the research ethics and governance committee of Bangor University's School of Psychology.

Participants

Recruitment was facilitated by the Down's Heart Group, a U.K. charity that offers support and information regarding heart conditions associated with Down syndrome. The charity forwarded information (through traditional mail) about the study to bereaved parents whose child had died at least 12 months prior to being approached. Because previous research has found little evidence that parental grief diminishes over time (Leahy, 1993; Rando, 1985; Rubin & Malkinson, 2001), no upper limit was placed on time since loss, and no limits were placed on the age of child or parent. Parents initiated involvement by responding to the information they received by telephoning or e-mailing D. R. Parents individually provided written consent and participation in the research was not contingent on the involvement of both parents. The experiences of parents not included in the current study will be discussed elsewhere. D.R. spoke to all participants on the telephone to explain the research and answer any queries prior to arranging a suitable time to telephone them again and conduct the interview.

Six married couples whose child with Down syndrome and a CHC had died agreed to participate in the study. The mothers' ages ranged from 43 years to 62 years (M  =  53.33 years, SD  =  7.79). The fathers' ages ranged from 43 years to 76 years (M  =  56.33 years, SD  =  12.23). The children were between 2 years and 18 years (M  =  9.08 years, SD  =  6.33), at death, and the mean time since death was 10.83 years (range  =  8–19 years, SD  =  4.06). The children had been diagnosed with a variety of CHCs, including Tetralogy of Fallot, atrioventricular septal defect, and pulmonary atresia, and some were additionally diagnosed with cardiac conditions resulting from their CHC, such as Eisenmenger syndrome. All of the parents were biological parents to the child who died; 3 of the couples had a daughter who died, and 3 couples had a son. All of the parents were from England, with the exception of 1 Australian father and 1 mother from New Zealand. All of the children were born in England, and all of the families were living in England when their child died. None of the couples had other children with disabilities, and only 1 couple gave birth to additional children following the death of their child. Three of the children died in hospital following a period of medical intervention, and 3 were receiving palliative care when they died (1 in a hospice, 2 at home).

Data Collection

A semistructured interview schedule was developed, based on questions previously used by Milo (1997) to elicit parental responses to the death of a child with a developmental disability. Two pilot interviews were carried out with a mother and father couple who did not take part in the research project. Changes following the pilot included more prompt questions and equal focus on the birth as well as death of the child. A copy of the interview guide is available from the first author.

The interviews were conducted by D. R. over the telephone, an approach that has been rated in previous research to be less stressful for bereaved participants than nonbereaved controls (Taneja et al., 2007). Parents were interviewed separately, and on different days than their partner, and they were informed that their comments would not be disclosed during the interview with their partner. It was explained to parents that anonymous quotes from the interviews would be used in published material to emerge from the research. With participants' consent, the interviews were digitally recorded using a digital recorder and lasted an average of 58 min (range  =  36–92 min).

Data Analysis and Interpretation

All interviews were fully transcribed by an external company specializing in transcription services. Twelve interviews were analyzed, a total of 237 pages of 1.5-spaced text in Times New Roman, font size 11. On average, interviews were 19.75 pages in length (mothers, 22.67 pages; fathers, 16.8 pages). Transcripts were then analyzed in accordance with IPA (Jarman, Walsh, & De Lacey, 2005; Smith, 1995; Smith et al., 2002). All of the interviews were completed prior to commencement of analysis. The first author annotated and coded the transcripts for the presence of important themes and produced summary documents containing mention of each topic. The process was repeated for each transcript. For each couple, the mother's, then father's, interviews were analyzed individually, compared with the other half of the couple, and then compared with and contrasted to other couples.

For purposes of audit and validation, the second author (J. H.), who has expertise in IPA, read through each transcript and the lists of themes, master themes, and quotes, ensuring the emerging themes were visibly grounded in the data and none had been omitted. A reflexive diary kept by the researcher was consulted throughout the analysis and writing process. This allowed checking of any unclear details and reviewing any comments made following the interview when there were disagreements with regard to meaning. Discussion between D. R. and J. H. resulted in minor changes to the arrangement of themes. The master-theme list changed constantly throughout analysis and writing, with the addition and collapsing of themes into categories until a final list of four themes emerged. The interview themes were not shared with participants. This topic is the subject of current debate among IPA researchers, but, given the interpretative nature of the approach, it is not applied in the majority of IPA research (Flowers, 2007). The themes are discussed below and illustrated with verbatim quotes from the interviews. For purposes of confidentiality, all quotes have been made anonymous. When providing extracts from the interviews, the following transcript conventions are used:

…  =  short pause

(…)  =  words omitted to shorten quote

[text]  =  explanatory information included by author

Results

Four themes emerged from an analysis of interviews, and each theme is discussed and illustrated with verbatim extracts from the interviews. The themes are as follows: dilemmas associated with the dual diagnosis; “we had to make a decision”—treatment decisions during the life and the death of their child; “we weren't really going through it together”—ways couples coped when bereaved; and ripples from the child's life.

Theme 1: Dilemmas Associated With the Dual Diagnosis

None of the parents interviewed were aware their child had Down syndrome prior to the birth, and receiving a diagnosis of Down syndrome at, or soon after, the child's birth was difficult for all. This difficulty was confounded when parents were informed that their child also had a serious heart condition. This additional diagnosis was revealed within 12 weeks of the birth of these children in all but 1 case (where the heart condition was not diagnosed until the child was 18 months old). These cases of dual diagnosis were unexpected, and 1 father recounted how it “seemed to be one, sort of, disastrous diagnosis after another.”

Where possible, the couples coped with the difficult situation together:

I was with her and the doctor came in and told us that, that she had Down's. He told us a little bit about the condition and but I don't think we were taking a lot in. And then he left and, you know, we sort of looked at each other and talked a little bit and [my wife] said, do you want to keep her. And there was no hesitation I wouldn't have even thought of it if she hadn't of asked. (father)

Circumstances, however, did not always facilitate this preferred way of coping. For example, 1 couple described how complications with the birth had separated them from each other:

And I felt very sorry for [my husband] because the first day I was really not with it. I kept phasing in and out so I'd wake up and then drop off and wake up and drop off, so it was a good day, I think, he was left completely on his own—well I wasn't functioning properly. (mother)

And I think what I remember is that feeling of being, sort of…you know, because my wife and I, together, are very strong, but when we're not together, I think it's, it's more difficult for each of us, so that, that whole experience, for both of us, we had to cope with that first 24 hours on our own, from the time the ambulance left to the, to the time that we were able to get my wife discharged the next morning. (father)

The impact of the diagnosis of a potentially life-threatening heart condition in addition to the diagnosis of Down syndrome was of more concern to all parents. They recalled that the heart condition and its related health problems often became the focus of their joint worries, such that the diagnosis of Down syndrome became a secondary issue: “I have to say that in all of this that the heart thing took over completely from the Down's thing. The Down's thing just was an incidental, because we were so worried about losing her” (mother).

There were instances when parental concerns about health were not validated and achieving medical care was not always straightforward:

I took him to the doctor, no, no, he's fine, he's just got a cold. And I did for four consecutive Mondays in that March and on the fourth time the doctor suggested it was me that had the problem, not [my son]. And he said really, there is nothing wrong with this child; I think the problem is you. I came away absolutely gutted and (…) took him to see a different doctor on the fifth Monday of that month and the doctor took one look at him and said he's got an enlarged liver, he's in heart failure. (mother)

Some parents discussed how they “kicked up a stink” (father) to ensure their child received medical attention. The diagnosis of a CHC additionally resulted in intense ongoing medical care of varied length in each family, meaning that parents spent a lot of time physically looking after their child:

Well, she was really difficult to look after because of the pain. She basically cried an awful lot, you know. It was frustrating not to be able to do anything for her, you know. I don't think in the first 12 months the two of us had a meal together. It was just holding her all the time. Trying to get her to sleep at night would take hours. It was hard going. (father)

In summary, it was apparent that being told that their child had Down syndrome and a CHC was difficult for parents and that the threat posed by diagnosis of Down syndrome was second to the physical health needs of their child. The subsequent care needs of their child with Down syndrome resulted in a caring role that lasted the length of the child's life for all mothers and fathers, which was fraught with difficulty but shared between parents. This joint responsibility took its toll on couples and their marital relationship, which was illustrated by the parents' exasperated accounts. These reports raise issues not yet fully attended to by intellectual disability researchers, one of which is the reality of receiving a second, potentially fatal, diagnosis for a child already diagnosed with Down syndrome. Previous research has illustrated the diversity of attributions of diagnosis that parents may hold (Dale, Jahoda, & Knott, 2006) and the outcomes that attributions of blame may have for parents: for example, higher parenting stress for parents who blamed health professionals for not preventing the birth of their child with Down syndrome (Hall, Bobrow, & Marteau, 1997). Hedov and colleagues (2002) illustrated findings of dissatisfaction with the timing of the diagnosis of Down syndrome, insufficient support and information, and too much negative information given to parents.

Theme 2: “We Had to Make a Decision”—Treatment Decisions During the Life and Death of Their Child

Parents were highly involved in their child's care, and, as a result, couples chose to make decisions jointly throughout their child's life, surrounding the child's medical treatment: for example, whether their child should undergo a risky procedure. Such decisions were agreed on jointly, but it was evident that a lack of information and time made decisions difficult:

When we went to see them about the heart, they said, she'd had a one in, a two in three chance of surviving the operation. And that was what I remember. And I said, terrible gamble, you know, there's a third chance that she'd die on the operating table (…). We had to make a decision there and I remember saying, it's like putting us in the position of God. (father)

In addition to choices surrounding treatment, parents had to make decisions during their child's life, and following their death, on issues of parenting, education, autopsies, seeing the body, burial and funeral arrangements, and their own future. Decisions were generally made jointly, and parents tended to talk about the importance of making decisions together or at least having someone else to share the decision-making responsibilities:

I think it was important to me. I still believe this, and I have done ever since, to have two people, not, not…even if it's not, you know, your, your partner, I think it's vital to have two people there. (father)

Sharing responsibility meant couples could share positive but also negative reflections on the experience: “When he died I said there's no way you're doing an autopsy on him. There was no way they were going to cut him open, but I wish they had have done it now” (father).

We'd both said that we didn't want a post mortem. In retrospect I wish there had been. I mean, they say that he died because there was heart and lung failure, but I don't know for sure really. You know, nobody really knew why he was in hospital or anything. I just wish now that there had been a post mortem, but at the time you don't want to go through that. (mother)

The above accounts illustrate the difficulty that making decisions posed for parents. They illustrate how good communication with a significant other was helpful and, for some, central to the decision-making process. Conversely, a lack of medical knowledge or making what parents saw as the wrong decision, such as whether to have an autopsy performed, may result in regret and guilt for parents. Research in other areas of intellectual disability has confirmed this need for clear information and communication on the part of health care professionals involved in diagnosis (Graungaard & Skov, 2007). In this particular situation, parents experience a double diagnosis that brings with it decision-making responsibilities but may also result in attributions of blame. The impact of both may make coping more difficult and add to parents' emotional responses.

Theme 3: “We Weren't Really Going Through It Together”—Ways Couples Coped When Bereaved

The couples fell into two groups with regard to whether they coped with their grief: separately or together, as a couple.

Coping separately

Although the partners were interviewed individually, 2 of the couples clearly spoke similarly of difficulties comforting each other in their grief, gender differences in grieving causing problems, and additional losses that may have confounded the grief experience: “I suppose at the time what made it worse was that we were both going through it, we weren't really going through it together; we were going through it apart and rubbing up against each other” (father).

In both sets of parents, both partners discussed additional losses, including financial worries following the death, illness, the impact of grief on siblings, and lost support networks. However, it was the topic of having more children after their child had died that became a key focus of the interviews with mothers and fathers. Mothers, in addition to losing their child, reported losing a caregiving role they had expected would continue for years to come, and this was made more acute by an inability to have more children and recover this role:

I was sterilised when my youngest was two (…) I thought it was my responsibility to have it done (…) when [my son] died, I really was angry about that, because even though we were [age] when [my son] died, it would have been nice to have the choice. I know you can't replace your child or anything, but it was my way of life, bringing up children. (mother)

These additional losses were potentially responsible for increased communication difficulties and problems in the marital relationships:

So the menopause thing merged into the grieving, and they kind of fed on each other, probably. Talking about it now, I don't know why [my husband] is here, actually. Why he didn't clear off with [our other daughter] I don't know. (mother)

Coping as a couple

In contrast, the other 4 couples interviewed talked about how everyone experiences grief differently and how this diversity could not be attributed to gender difference alone. Their different ways of coping required sacrifice and patience, and it was the belief of 4 of the couples that tackling their grief jointly had brought them closer:

Well, we've always been very good friends and we've just…we spent the time together just talking, you know, about [our daughter], about what we were going to do. I think [my husband] found it harder to relate to other people or have contact with other people during that time (…). I'm sort of more easygoing about that sort thing, but my main priority, my main concern then, was, you know, what [my husband] needed (…). And I think, looking back now, I think that it helped, you know. It helped because I think we talked about a lot of things then that, had we both been working and we both dashed back to work after a month or whatever, I don't think we would ever have talked about. (mother)

Coping with their grief was not an easy task, and 1 parent highlighted the difference that being bereaved as a couple made to his experience by comparing that experience with a previous loss:

Having lost parents, there's a huge difference between losing a parent and losing a child, because if you lose a parent your wife isn't bereaved in the same way, if it's your parent (…). You know, even, for example, and it's, it's not an issue, but I was just trying to give you a clear example, even taking part in this research. As it turned out, we both were keen to do it, but if one was keen to do it but the other one would be upset by it, even the thought of the partner doing it, it, it is different because you are bereaved as a couple, and that's true all the way through. (father)

The death had changed the lives of both partners thus they had to rebuild their lives and readjust together, not separately:

So I think it was something which mostly we coped with, [my husband] and myself, and then increasingly [our older son], as we felt able talk about it, and readjusted, in a sense, to the loss of [our son], and being a three rather than a four. (mother)

By sharing their emotions and supporting one another, the partners were less dependent on external sources of support and were the main source of support for each other:

But we helped one another, you know. I mean, because, you know…I knew that [my wife] had, you know, had lost [our daughter] and she knew that I'd lost [our daughter], so we helped one another. Well, we didn't think or consider it as help, you just, you just fall on one another's shoulders and sob. (father)

This was in contrast to the 2 couples who had found their grief difficult to cope with jointly. These couples highlighted the need for support from other sources: family, friends, doctors, other bereaved parents, counseling, and Down syndrome support groups:

The problem was we'd moved house (…) so [my wife] (…) had no real support. It wasn't until after about a year when we finally found a house and moved in and she got a doctor who said, well, what counselling did you get? The answer was none. She finally got some help. I really regret that we did that. (father)

The majority of parents were not offered bereavement counseling when their child died. Of the 2 mothers who received formal counseling, 1 found it useful and the other found it less so. One mother reported that her husband requested, but did not receive any, counseling through his local general practitioner and, consequently, felt let down by the lack of services:

And [my husband], unfortunately, had a worse experience and never really got any counselling at all. And I felt he was let down; he was let down. It often takes a lot of courage to ask for help, to get to the point of asking for help and then, when you do, then he really had to sort of fight to get some help and then never did. And then that in itself creates its own stress so he was let down and it wasn't fair. (mother)

The variety in accounts illustrate how differences in grieving were not simply gender dependent but a complex combination of prebereavement relationships, ways of coping, support received, and the impacts of other life events. The unmet counseling needs of parents also indicate the importance of recognizing the diverse and individual needs of bereaved parents (Robinson & Marwit, 2006). Parents in the current study discussed the importance of joint decision making with a partner, the different experience that comes from being bereaved as a couple, and an awareness of the potential for marital discord following bereavement, such as that stemming from an inability to have more children. Such difficulties may be closely related to marital satisfaction, a construct that is at the center of research into cognitions in marriage and marital distress (Bradbury, Fincham, & Beach, 2000; Fincham, 1994). Marital deterioration and breakdowns in communication were reported by some parents, and previous research has reported these factors as potential outcomes in some marriages following the death of a child, in addition to marital breakdown, a decrease in sexual intimacy, and conflict and anger (Oliver, 1999).

Theme 4: Ripples From the Child's Life

Although the death of their child brought negative repercussions, including financial worries, poor physical and mental health, and lifestyle changes, parents discussed the positive ripples that spread out from their child's life touching both family members and outsiders:

[My son]'s life touched on lots of other people, and a surprising number of people have been influenced by [my son]. (…) There are friends who've looked after [my son], who've subsequently gone into special education, into clinical psychology, specialising in learning disability. He's obviously influenced [my wife]'s current work, so all these ripples have gone out from [my son]'s life, and that helps to make sense. (father)

The parents explained a variety of additional positive outcomes of their child's life, including relief, career change, personal strength, confidence, patience, sensitivity, and perspective. These positive outcomes were reported by some as a result of the cyclic experience:

I perhaps have realised that I am a stronger (…) there's like an inner strength that rises up and you do, as I say, you find it within you to cope with these things. And so I guess I look back and I think, gosh, you know, we have been through a lot and we have come out the other side, you know. (mother)

Others, fathers in particular, differed from their partners and from each other with regard to how they viewed the impacts of their child's lives. One father stressed that the change for the better that he and his family experienced was an outcome of his daughter being born, not dying: “I believe it was [my daughter] being born that changed [our lives] and not [my daughter] dying, although obviously, when she died it devastated us. But I think our lives changed when [my daughter] was born” (father). However, that father recognized the positive impact that her death has had in terms of his current involvement in his children's lives: “And I think that's possibly something to do with [my daughter] dying. It makes you unapologetic for, for making the most of every opportunity” (father).

In addition, 2 of the other fathers reported that the experience of raising and losing their child had confirmed who they were and maintained the positive outlook they already had:

I think yeah, that. I think it's confirmed who I was, really. I don't think it's changed me that much. But, you know, hopefully, it deepened me or something and made me aware, more aware, that life is very fragile, but I think I knew that anyway. (father)

Most important for the couples seemed to be the impact that the experience of raising and losing a child with Down syndrome and a CHC had on their marital relationship:

I mean, you often hear of families with handicapped children sort of broken up as a result of that child being born, or dying, or just the sheer difficulty of living. But in our case I think it brought us even closer. (mother)

A positive outcome had been achieved despite tribulations along the way, and even the couples who had encountered some difficulty in coping with grief as a couple reported this:

It's not something that wouldn't affect anything. So yes it affected us for all the good and all the better or all the worse. I don't think it changed it probably. It changed both of us the way we think of each other and think of life and things I suppose. I mean I became much less driven by work after that. The only thing that matters now is [my wife and daughter]. (father)

Positive reflections on their experience were seen at some level in the accounts of all parents. Whether a response to their child's life, death, or both, parents attributed both personal change and growth to their experience in a positive way despite the considerable grief they had experienced. These positive reports were similar to previous research reports with bereaved biological and foster parents whose child with an intellectual disability died (Milo, 1997; Reilly, Huws, et al., 2008; Schormans, 2004; Todd, 2007).

Discussion

The findings of the current study give insight into an area of parenting a child with Down syndrome that has been largely overlooked by researchers. To our knowledge, our research on the topic of the impact of the death of a child with Down syndrome and CHC on parents is the first of its kind. The interviews with couples highlighted issues that are uniquely pertinent to this group, namely receiving multiple diagnoses of Down syndrome and a CHC, the more considerable threat carried by the CHC diagnosis, and a role in decision making surrounding medical treatment, including heart surgery. In the realm of bereavement research, it has been suggested that qualitative methods may be used to explore novel subject areas, which can be refined and probed further by quantitative means (Neimeyer & Hogan, 2001; Owens & Payne, 1999; Parkes, 1985; Stroebe, Stroebe, & Schut, 2003).

In the current research, we provide an in-depth look into the experiences of bereaved couples whose child with Down syndrome and a CHC had died and a starting point for future research. However, a large number of couples chose not to take part in this study, and, therefore, it is unknown how representative the participating couples were of the wider group of similarly bereaved parents. In addition the time since loss ranged from 8 to 18 years, and it is possible that parents whose children had died more recently would report different experiences and views: In particular, as with all bereavement research, those who were the most vulnerable may have chosen not to take part (Dyregrov, 2004). In addition, telephone interviews were used. In-person interviewing could have resulted in a different research relationship developing between the researcher and interviewees (Rosenblatt, 1995); however, research has suggested there are no significant differences between interviews conducted in person and those done over the telephone (Sturges & Hanrahan, 2004).

Despite these limitations, this research can be viewed as a starting point for future research by linking themes with previous findings. Parents reported that they found the process of receiving, first, a diagnosis of Down syndrome and, then, an additional diagnosis as difficult. Although much has been written on the process of diagnosis of Down syndrome and how it has changed with the availability of prenatal diagnosis (Lenhard et al., 2007), little is known about the diagnosis of additional medical conditions (Self, 2008). In addition, communicating the diagnosis of Down syndrome can be influenced by professionals' believes of attribution and blame (Elwy, Michie, & Marteau, 2007). Because long-term outcomes of the diagnostic process are not known (Poehlmann et al., 2005), additional research and training are required to ensure the process of diagnosis is sensitive to the needs of parents.

Although some couples in this study reported differences in grieving, which they attributed to gender differences, the parents reported that they felt that the differences in grief could not be explained by gender differences alone. Differences in grief symptoms according to gender that has been found by other bereavement researchers have been questioned as potentially no more than a function of grief measures insensitive to male ways of grieving (Lang & Gottlieb, 1993). In addition, in reporting benefits found in their experience, some parents reported positive outcomes in terms of their marital relationship. All the marriages in the current research were intact, and predictions surrounding a higher likelihood of marital breakdown following the loss of a child are potentially overestimated (Murphy, Johnson, & Lohan, 2003). In addition, research has found lower rates of divorce in families of children with Down syndrome compared with families of children with other conditions present from birth or no identified disability (Urbano & Hodapp, 2007). When divorce occurred, individual factors, including age of the child, age of parents at marriage, educational history, and living location, were influential (Urbano & Hodapp, 2007). Additional research with larger groups of mothers and fathers of children with Down syndrome and a CHC could investigate grief experience and marital outcomes and their contribution to adaptation in parental bereavement.

The putative effect of the “Down syndrome advantage” in other areas is also unknown. To what extent might the relative commonality, family characteristics, or stereotypical views of the wider public of people with Down syndrome impact the availability of support for parents? Research involving groups of parents whose children with other and more infrequent intellectual disability–related conditions have died would help illuminate parental experiences across a variety of circumstances and allow comparisons between groups.

Topics not raised by the current sample but raised previously by research with parents of children with an intellectual disability include feelings of anger, guilt, and disenfranchised grief (Attig, 2004), in which others do not view parental grief as valid or appropriate because their child had an intellectual disability (Milo, 1997; Reilly, Hastings, et al., 2008; Wood & Milo, 2001). The absence of these topics may be accounted for by individual differences, the couples may not have framed their experiences in this way, or the experiences of bereaved parents of children with Down syndrome may be specifically different to that of other parents. Comparative research could help us better understand these patterns. Research has highlighted the medical complications (Tigay, 2009) and familial implications (Self, 2008) of caring for a child with Down syndrome and leukemia; however, the topic of bereavement following leukemia has not been explored by research. Additional research exploring the experiences of parents caring for children with Down syndrome and other chronic health conditions could further our knowledge in this area.

In terms of bereavement interventions for parents of children with Down syndrome, the current research and sample has the potential to inform practice and research in this area. Parents were not homogenous in terms of the support they found useful, and although some reported accessing professional bereavement counseling, this was not universal nor did it play a significant role in their stories. Research tells us that parents may take between 4 and 9 years to report improvements on measures of anxiety and depression following the death of a child to cancer (Kreicbergs et al., 2004). This should be considered in terms of the risk of “problematizing” a normal reaction to the loss of a loved one and idealizing a period following the loss where symptoms of grief will be absent (Moules & Amundson, 1997).

If interventions are deemed necessary it should also be recognized that the effectiveness of traditional bereavement intervention has been scrutinised and found to be lacking (Jordan & Neimeyer, 2003; Rowa-Dewar, 2002). Within the methodologically sound parental bereavement intervention studies (Jordan & Neimeyer, 2003), interventions have been found to be most useful for mothers and those who are the most distressed (Murphy et al., 1998; Murray, Terry, Vance, Battistutta, & Connolly, 2000). However, given the depth of experience described by fathers in this study, it is imperative that interventions are tailored to paternal needs as well. Suitable interventions for this group could be developed with reference to previous studies in which extensive detail on procedure is provided (e.g., Murphy et al., 1998). Parents in the current and previous studies reported the benefits of support from similarly bereaved parents (Milo, 1997; Reilly, Huws, et al., 2008). Service providers could become involved in bereavement intervention by facilitating support groups for parents and couples.

In conclusion, although small in scale, this qualitative study identifies some important areas for future research and clinical practice. The results highlight the importance of the process of diagnosis and decision making and suggest that improved and increased awareness on the part of health care professionals could have valuable implications for parents. In addition, the current study uncovered perceptions of how the bereavement experience may differ as a result of being part of a couple and/or having a child with both physical health problems and an intellectual disability. Health care and bereavement professionals should be aware of both the individual needs of each parent and the mutual support partners can provide to each other.

Acknowledgments

This research was supported by Mencap Cymru, the European Social Fund, and Bangor University.

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Author notes

Editor-in-Charge: Steven J. Taylor

Deirdre Reilly, PhD (deirdre.reilly@gmail.com), Trainee Clinical Psychologist, School of Psychology, University of East London, London, E15 4LZ, United Kingdom. Jaci C. Huws, PhD, Lecturer, School of Healthcare Sciences, College of Health & Behavioural Science, Bangor University, Bangor, Wales, LL57 2EF, United Kingdom. Richard P. Hastings, PhD, Professor of Psychology, School of Psychology, Bangor University, Bangor, Wales, LL57 2AS, United Kingdom. Frances L. Vaughan, PhD, DClinPsy, Senior Research Fellow, School of Psychology, Bangor University, Bangor, Wales, LL57 2AS, United Kingdom.