Death Studies

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Dyadic Coping of Parents After the Death of a Child Eva Bergstraesser, Susanne Inglin, Rainer Hornung & Markus A. Landolt To cite this article: Eva Bergstraesser, Susanne Inglin, Rainer Hornung & Markus A. Landolt (2015) Dyadic Coping of Parents After the Death of a Child, Death Studies, 39:3, 128-138, DOI: 10.1080/07481187.2014.920434 To link to this article: http://dx.doi.org/10.1080/07481187.2014.920434

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Date: 05 November 2016, At: 08:46

Death Studies, 39: 128–138, 2015 Copyright # Taylor & Francis Group, LLC ISSN: 0748-1187 print=1091-7683 online DOI: 10.1080/07481187.2014.920434

Dyadic Coping of Parents After the Death of a Child Eva Bergstraesser Pediatric Palliative Care, University Children’s Hospital Zurich, Zurich, Switzerland

Susanne Inglin and Rainer Hornung Department of Psychology, University of Zurich, Zurich, Switzerland

Markus A. Landolt Department of Psychosomatics and Psychiatry and Children’s Research Center, University Children’s Hospital Zurich, Zurich, Switzerland

This article explores the grief process of parents following the death of a child due to a life-limiting illness, putting particular focus on dyadic coping. Participants included 46 married parents (23 couples). A mixed-methods design was used with in-depth interviews and standardized questionnaires. All parents were interviewed separately. Aspects of common dyadic coping (e.g., sharing emotions or maintaining bonds to the child) helped them work through their grief as a couple but also individually. The authors conclude that dyadic coping plays an important role in grief work and adjustment to bereavement.

The death of a child is one of the most stressful and dramatic events a parent can experience. Much research has been undertaken on bereavement, including that of bereaved parents (Hendrickson, 2009; Kreicbergs, Lannen, Onelov, & Wolfe, 2007; Murphy, Johnson, Wu, Fan, & Lohan, 2003), which in comparison with more common causes of bereavement shows higher rates of complicated grief reactions. Bereavement is not only associated with psychological symptoms and illness (Hendrickson, 2009; Li, Laursen, Precht, Olsen, & Mortensen, 2005), but also with physical health problems and an increased risk of mortality from several causes, including suicide (Li, Precht, Mortensen, & Olsen, 2003; Stroebe, Schut, & Stroebe, 2007). Bereavement outcomes are influenced by situational, intra- and interpersonal factors (Stroebe et al., 2007). In the context of a child’s death, type of death (e.g., neonatal, disease or disorder related, or

Received 14 October 2013; accepted 12 April 2014. Susanne Inglin is now working in the Child and Adolescent Psychiatry Services of the Canton of Schwyz, Schwyz, Switzerland. Address correspondence to Eva Bergstraesser, Pediatric Palliative Care, University Children’s Hospital, Steinwiesstr. 75, CH-8032 Zurich, Switzerland. E-mail: [email protected]

traumatic), experiences during the child’s illness, the end-of-life phase, and circumstances of death strongly affect long-term outcome of parental grief (Keesee, Currier, & Neimeyer, 2008; Kreicbergs et al., 2007; Wijngaards-de Meij et al., 2005; Wijngaards-de Meij, Stroebe, Schut et al., 2008). Differences between specific disease- or disorder-related deaths have yet to be studied. Thus, little is known whether bereavement following possibly curable diseases, such as cancer, differs from diseases or disorders that are from the outset incurable. Intrapersonal factors such as coping styles and individual resources, and interpersonal factors such as support from family or friends may also contribute to the long-term outcome for the grieving person (Stroebe et al., 2007). Gender-specific aspects of the grieving process among parents have been described, with mothers being affected more profoundly by their child’s death and showing deterioration of physical health, higher depression scores (Rubin & Malkinson, 2001; Znoj & Keller, 2002), and higher grief scores (Barrera et al., 2007; Keesee et al., 2008; Wijngaards-de Meij et al., 2005; Wijngaards-de Meij, Stroebe, Stroebe et al., 2008). Gender differences were also found in grieving styles;

ROLE OF DYADIC COPING IN PARENTS’ GRIEF

whereas mothers were prone to sharing feelings and emotions, fathers saw greater importance in learning how others solve problems (Alam, Barrera, D’Agostino, Nicholas, & Schneiderman, 2012; Barrera et al., 2007; Hopmeyer & Werk, 1994). These differences may lead to an asymmetry between parents, contributing to secondary losses, such as marital discord (Stroebe & Schut, 1999), and even disrupting relationships (Oliver, 1999). From a family system point of view, grief is no longer conceptualized as an individual response to loss, but as a life event that deeply affects the system of a family or partnership (Gilbert, 1996; Lichtenthal, Currier, Neimeyer, & Keesee, 2010; Shapiro, 2008; Walsh & McGoldrick, 2004). Open and honest communication among family members is accorded great importance in adaptation to the loss (Kazak & Noll, 2004; Walsh & McGoldrick, 2004). This includes sharing grief and thoughts, and telling stories to reconstruct the meaning of the deceased child in the family’s ongoing life and to also construct and stimulate family meaning making (Nadeau, 2010). A durable narrative about the deceased may contribute to the togetherness in the family as well as in the couple (Riches & Dawson, 1996; Shapiro, 2008). The impact of bereavement on parents as a couple has been explored in a few studies, both quantitatively (Stroebe et al., 2013; Wijngaards-de Meij et al., 2005; Wijngaards-de Meij, Stroebe, Schut, et al., 2008) and qualitatively (Barrera et al., 2007; Buchi et al., 2009; Giannini, 2011; Hagemeister & Rosenblatt, 1997; Hooghe, Neimeyer, & Rober, 2011, 2012; Stroebe et al., 2013). In this context, maintaining a ‘‘continuing bond’’ to the deceased child plays a significant role in parental grieving (Lichtenthal et al., 2010; Riches & Dawson, 1998; J. Ware & Raval, 2007; Wheeler, 2001). In most studies, communication and grief sharing is thought to have priority in the complex process of grief work (Buchi et al., 2009; Giannini, 2011; Nadeau, 2010; Riches & Dawson, 1998; Walsh & McGoldrick, 2004). A very recent study focused on partner-oriented self-regulation (POSR) in 219 couples who had lost a child (Stroebe et al., 2013). Partners who tried to protect each other from pain and suffering (high level of POSR) showed higher levels of grief. In addition, the attempt to protect a partner was associated with higher levels of grief in that partner. This finding contrasts with those from a qualitative study by Hooghe et al. (2011), who described a more complex view of communication in bereavement, focusing on the meaning of talking and silence in a dialectical, dialogical, and dynamic approach. This is illustrated in a case study of parents who lost their son to a brain tumor and who tried to spare each other excessive pain, but who also sought to stay emotionally connected through writing letters to each other. Ten years following the son’s death they

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were able to talk and to reconnect again. This raises the question of whether internalizing grief always signifies a maladaptive coping strategy, and whether correlations between standardized questionnaires are sufficient to reflect the complexity of couple communication following the death of a child. Our investigation was driven by the question of how parents cope with the sequelae of grief in their partnership. The search for a systemic framework led us to the concept of ‘‘dyadic coping’’ (Bodenmann, Pihet, Shantinath, Cina, & Widmer, 2006; Randall & Bodenmann, 2009). This construct is based on the transactional theory of stress described by Lazarus and Folkman (1984). The death of a child is a major dyadic stressor and affects the individual parent as well as the relationship of the parents. This triggers a complex process of interactions delineated in the transactional stress model. Thus, in simpler words, dyadic coping defines the efforts by one or both partners to manage stress and to create or restore prior physical, psychological, or social homeostasis within both of the partners. Two categories of successful coping in couples are of particular interest for our study: common dyadic coping (both partners are directly affected by the stressful event and participate in the coping process symmetrically or complementarily), and supportive dyadic coping (only one partner is exposed to the stressful event and is supported by the other). The aims of our study were to explore (a) dyadic coping of parents after the death of a child due to a life-limiting disease, (b) factors of parents’ dyadic coping related to the child’s disease and the circumstances of death, and (c) interdependencies between dyadic coping and the general condition of the parents.

METHOD Participants Participants were parents whose child had died because of a life-limiting disease and was treated at a large tertiary treatment center in Switzerland. The age range of the children was 1–18 years at time of death. We divided the diseases into two categories, oncological (n ¼ 14) and nononcological (n ¼ 9). Prior to death, all children had high needs for support and care. Parents were only included if (a) the child’s death had occurred at least 12 months and at most 5 years previously, (b) they could speak German, (c) they agreed to be interviewed separately, and (d) they consented in writing. Of 36 eligible families, 23 couples agreed to participate (response rate 64%). A comparison between participants and nonparticipants revealed no significant differences with respect to diagnoses of the deceased children and

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E. BERGSTRAESSER ET AL.

time since death. The mothers’ median age was 44 years (range 30–56) and the fathers’ 46 years (range 31–57). The median length of marriage was 17.8 years. The number of healthy children in the family during the time of the child’s illness varied between one and three. After the death of the sick child, nine couples had a further child. Also, 37 parents were of Swiss nationality and 9 were of other nationalities; German was the first language of 36 parents. More than 50% had secondary school or higher-level education. Details of the deceased children are listed in Table 1. Children suffering from nononcological diseases were diagnosed earlier and had longer disease trajectories compared to children with oncological diagnoses. Also, 16 children died at home and seven in hospital. Procedure Parents were recruited purposively through a letter of invitation sent by the treating physician. If parents expressed willingness to participate, Susanne Inglin (the second author) contacted the family. Prior to each interview written informed consent was obtained. The ethics boards approved the study procedure. The interviews lasted between 50 and 120 min and took place at the parents’ home or in the Department of Psychology, which is separate from the Children’s Hospital. All participants were offered the opportunity to receive further psychological support from the psychologist of the Children’s Hospital Palliative Care Team; two took this opportunity. After the interview, parents received the questionnaire with the standardized instruments as listed below and were asked to complete TABLE 1 Characteristics of the Deceased Children Oncologya

Characteristic

Girls (n ¼ 7)

Age at diagnosis (years) M=Mdn 12.5=14 SD 4.9 Range 2.3–16.8 Age at death (years) M=Mdn 13.9=16.5 SD 5.3 Range 3.0–18.1 Length of disease (years) M=Mdn 1.5=1.3 SD 0.9 Range 0.7–3.0

Boys (n ¼ 7) 3.4=3 2.8 0.16–8.9 7.4=8.0 2.3 4.0–10.1 3.9=2.5 2.6 0.6–8

Nononcologyb Girls (n ¼ 2)

Boys (n ¼ 7)

0.0–1.5

0.9=1.0 1.1 0.0–3.0

1.2–2.5

8.9=8.0 5.7 1.0–16

1.0–1.2

7.8=6.0 6.2 0.04–16

a Diagnoses included: leukemia=lymphoma (n ¼ 6), brain tumors (n ¼ 3), neuroblastoma (n ¼ 3), and musculoskeletal tumors (n ¼ 2). b Diagnoses included: neurological conditions (n ¼ 3), cardiac disorders (n ¼ 2), renal diseases (n ¼ 2), metabolic disorder (n ¼ 1), and congenital immunodeficiency (n ¼ 1).

the questions without consulting each other and send it to Susanne Inglin within 2 weeks. Measures An interview guide was developed, piloted, and modified accordingly. Besides aspects of care, two themes were addressed: individual and dyadic coping of parents after the child’s death. With respect to dyadic coping, we focused on common dyadic coping and supportive dyadic coping as described by Bodenmann et al. (2006). SF-12 Health Survey (Bullinger, 2000) is a standardized short version of the SF-36 with 12 items that assess physical and psychological health. Each item is rated on a 3- or 5-point Likert scale. The standardized mean is 50 (SD ¼ 10), with higher scores indicating better physical and mental health. Reliability and validity are comparable to the SF-36 in the general U.S. population (J. E. Ware, Kosinski, & Keller, 1996). Internal consistency proved to be satisfactory in our sample (Cronbach’s a ¼ .81). The German version of the Center for Epidemiological Studies Depression Scale (Allgemeine Depressionsskala; ADS) is a self-report questionnaire with 20 items that assess depressive symptoms of the preceding week. The items are scored on a 4-point Likert scale ranging from 1 (not at all) to 5 (nearly every day). A total score above 23 implies depressive symptoms. Cronbach’s alpha in our sample was .89. Texas Revised Grief Inventory (TRIG-D; Znoj, 2008) has 16 items focusing on present feelings of grief (e.g., ‘‘At times I feel the need to cry for the person who has died’’), rated on a 5-point Likert scale ranging from 1 (strongly agree) to 5 (strongly disagree). Lower scores indicate higher intensity of grief. A Cronbach’s alpha of .88 showed good internal consistency in our sample. The Dyadic Coping Inventory (DCI) is a 37-item questionnaire that assesses dyadic coping under conditions of stress (Bodenmann, 2008). The five subscales cover communication, supportive dyadic coping, delegated dyadic coping, negative dyadic coping, and common dyadic coping, which are rated on a 5-point Likert scale ranging from 1 (hardly ever) to 5 (almost always). The cut-off value of 111 determines coping traits above or below an average norm. Cronbach’s alpha was .79. Interview Analysis The interviews were transcribed verbatim and analyzed by Susanne Inglin and three trained research assistants using both a reconstructive-hermeneutical approach (Lucius-Hoene & Depperman, 2004) and content analysis (Mayring, 2007). The reconstructivehermeneutical method aims to obtain a comprehensive

ROLE OF DYADIC COPING IN PARENTS’ GRIEF

view and understanding of the individual participant within the interview before going into detail and abstracting responses and text passages. Through the definition of heuristics or themes the investigators engaged in a process of understanding and reconstructing of interview participants’ experiences, feelings, and thoughts. For example, one analytic heuristic involved identifying dyadic coping strategies of parents. This heuristic was then concretized with extensive text passages (key phrases), which were then summarized into codes (e.g., to speak openly about feelings). Based on these heuristics and codes, each interview was analyzed and case excerpts were written. The advantage of the reconstructive-hermeneutical approach was that it yielded a more contextualized understanding and the possibility of comparison between the interviews, without having to abstract the responses of interview participants at an early point in the analysis. For the systematic coding process we then used content analysis, as described by Mayring (2007), in a modified fashion. Based on the interview excerpts, similar code phrases were reduced to clusters leading to categories and emerging themes. To assess the reliability of categories, interrater reliability between Susanne Inglin and the research assistants was estimated as good to very good (j ¼ .81–.90). The validity of categories was verified through ‘‘member checking’’ them with interviewees. This process was performed with two couples, resulting in only minor modifications. Quantitative Analysis of Standardized Questionnaires and Method Triangulation Statistical analysis was carried out with SPPS version 18.0 for Macintosh (SPSS Inc., Chicago, IL). Following descriptive statistics, the one step of method triangulation included the comparison of extreme groups (Bortz & Do¨ring, 2006). Two groups, one with good general condition and the other with poor general condition were formed; these included the psychological health status, depression, and grief intensity as assessed by SF-12, ADS, and TRIG-D. The 25th and 75th quartiles of all three measurements were used to differentiate between ‘‘poor’’ and ‘‘good’’ condition. A depression score (ADS) above 23 qualified for a poor condition. In addition, poor- and well-functioning couples were defined by DCI values below 111 for poor- and values above 145 for well-functioning couples. We then compared the qualitative analysis of the interviews with parents who fulfilled criteria of generally poor or good condition and poor- and well- functioning partnerships (triangulation). Such an extreme group approach has been recommended for pilot studies or in the

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exploratory phase of research for the detection of interaction effects (Preacher, Rucker, MacCallum, & Alan, 2005).

RESULTS From the interviews with 46 parents (23 couples) four major themes emerged: (a) common dyadic coping, (b) coping with individual differences, (c) supportive dyadic coping, and (d) planning for the future. Common Dyadic Coping Grief work partly occurred in the sense of common dyadic coping, and included shared grief rituals such as an evening walk to the child’s grave, or dealing with birthdays or anniversaries of the death day. Parents felt a need to share emotions, mutually provide consolation, jointly remember, and maintain the bonds to and the presence of the child even years after the death. Nearly all parents used the metaphor that the illness and the death of the child welded them together. For some, this meant hard work to be done as a couple, or, as the mother of a young child who died at only a few months of age due to a cardiac malformation said, ‘‘We felt lost when she was no longer here. We cared for her all these months. Our relationship suffered during this time. And now, all of a sudden, we didn’t know what to do with each other.’’ The need for togetherness could even increase over time, as the willingness of their social environment to talk about the child’s illness and death declined. Parents believed that similar individual coping strategies and a well-functioning partnership prior to the child’s illness were helpful in their dyadic coping and emotional togetherness after the death of their child. Grief rituals, particularly walks to the child’s grave, not only had the function of remembering the child but also of exchanging everyday life situations and having time separate from the family, the other children. In addition, one father described that the walk to the grave symbolized ‘‘not being alone’’ and ‘‘coming and going’’: ‘‘I think I have not yet been alone when going to the cemetery. This walk is not only sad for us; it is also just going and leaving again.’’ Mothers and fathers expressed the need for togetherness equally: Speaking about [the child] in this way was only possible for the two of us. Nobody would understand, but we can. We can talk about [the child], we laugh and cry together. This is wonderful. I will never have anybody else with whom I can share this. He is the daddy of [the child]! Probably this is what welds us together. If you have survived something like that [ . . . ].

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More problem-oriented coping strategies included: reading literature about grief; formulating aims on how to cope better with the anticipated long-lasting grief process; or seeking external support to protect against the risk of contaminating each other with sadness. Besides the needs for togetherness several couples learned to accept dissimilarities, or as one couple formulated it: ‘‘I think we cannot solve everything together and there is no need to do so. Everybody has their own ways to grieve; there is no ‘right’ or ‘wrong’.’’ Thus, parents realized their individual responsibility to cope with grief on their own, as depicted by a father’s metaphor: ‘‘Two drowning people are not able to save each other.’’ This mutual understanding allowed the natural presence of the deceased child in the ongoing life of the family. Coping with Individual Differences Apart from the togetherness experienced through spending time together as a couple and reflecting on grief, parents were confronted with the particularities of their individual grief process, which often differed markedly. From the perspective of mothers and fathers, but particularly fathers, the bonding to the child was stronger in mothers and could thus be a reason for stressful differences between parents. This difference may explain why mothers tended to seek social support and opportunities to exchange their experiences and memories, whereas fathers clearly denied receiving benefit from social support and talking. Some husbands seemed to be challenged by the needs and expectations of their wives, which they tried to fulfill because they felt strongly that they were the only person who could do so. We had our crises; we all—the whole family—had to redefine ‘‘family’’, as she [the deceased 15 year old daughter] was missing. I entrenched myself—over the weekends [. . .] until my wife complained and was concerned about my way of coping. And yes, she was right, I tried to catch up again; I tried hard to find a way back.

Nevertheless, husbands tended to behave as loners and several tried to close ‘‘this matter’’ of death without ignoring it. A father expressed it literally as ‘‘for me, this is just done—and it is, actually. His [the son’s] life just ended there.’’ One mother felt the ongoing need to talk about her painful memories of the child’s illness (17-year-old daughter died of cancer); however, respecting her husband’s wish not to talk about or to be confronted with it, she actively involved friends to take some of the load off her husband without making him feel neglected: ‘‘Everybody needs to go his or her way. We four as a family, we are all different: the other

children too, they function differently. This is not difficult for me. I am just glad that she may be present. We do not pretend she was never here.’’ This mother expressed that there was a stable basis in their relationship and family life allowing everyone to act individually and look after themselves. Nevertheless, some fathers also wanted to keep memories, such as toys and clothes of the child. For example, a mother in the nononcology disease group wished to re-enter life and let go but could accept her husband’s wish to keep these things and take care of them, and thus contribute to their partnership despite divergent needs. To reach a level of acceptance, open and continuous communication to exchange and balance needs and wishes was necessary. Thus, some cultivated heart-to-heart talks when they had the impression that they were drifting apart, whereas others experienced dyadic conflicts. One father impressively described, She suffered more, she is the mother, a woman, but perhaps there is also a hormonal or genetic reason, which is different; yes, it must be like that. The child came out of her body; this is something different. She became extremely aggressive toward me, hypersensitive. I had difficulties in dealing with this; I am always in second place, and my wife is mother and mother and mother.

His wife, in a separate interview, provided her perspective: ‘‘I was in a tremendous crisis, with aggression and fury, which extended over months. I was so angry, had quarrels with [husband] and raged against him even if he did not deserve it.’’ Supportive Dyadic Coping Parents reported their attempts to deal with the individual needs of their partners and to support them accordingly. Patience and confidence in the partner were named as pivotal in insuring this aspect of dyadic coping. An example of supportive dyadic coping was to accompany the partner to a self-help group or a psychologist, but also to reassure mothers who were overanxious about the health of their other children. One mother, for example, stated, ‘‘We have a very good relationship; he [husband] often had to withstand my panic attacks when one of the other children became sick. He was less worried and so he became somehow the tower of strength.’’ Particularly mothers appreciated this support and acceptance from their husbands, which also became important when they decided to start new professional training. In contrast, fathers emphasized the tremendous work their wives had done during the child’s illness and felt that following this demanding phase it was their task to thank them and return the favor by helping to start a new phase of life.

ROLE OF DYADIC COPING IN PARENTS’ GRIEF

This mutual support was virtually lacking in couples with poor dyadic coping. For example, one mother who lost her only child due to a neurological disorder, said ‘‘We have no energy to share what we have in common. We have been married for 20 years and know about the values of our partnership. I would not find a better partner.’’ Her husband confirmed this; he also felt strongly that both of them moved on disparate paths. Dyadic Coping Through Planning the Future Planning the future after the child’s death could help, but was also challenging. Several couples wished to start a new life by moving to another house or having further children, particularly when the child died in infancy or when family planning was still in progress. They also reflected on shaping family life and optimizing the parenting of their healthy children. Healthy children often became a matter of concern; parents worried about how siblings coped with their grief and whether they needed more support, including professional counseling. One father, whose child died of a brain tumor at age 11, expressed his worries: Both of us [parents] have found a way to cope, but sometimes we have the impression that our two older kids have not worked through their grief. This is a burden for us as a couple. We think that we didn’t sufficiently meet their needs; they were not involved adequately. We paid too much attention to our sick child.

The parents’ readiness for the future can also be assumed in their move to take respite from grief by, for example, going to the cinema, watching a movie at home or going out for dinner. One mother, whose child died briefly after diagnosis of a rare syndrome, stated, I think we frequently visit the grave; I really feel that we do it together. However, sometimes we need a break; then we might say: ‘‘Now we’ll watch a movie, just any movie. Yes, we’ll take a little break.’’ This might sound ridiculous but, in between, we need to allow ourselves this; we need to put it aside a bit.

Moreover, parents described how they had to find and get used to each other again after the long and burdensome illness of their child. During the illness, parents often met only irregularly as they had to divide their tasks between home and hospital, or at home, where one was nearly exclusively involved in the care of the child. Thus, intimacy and sexuality had often been missed completely, and parents got used to suppressing their own needs. Results of Methods Triangulation Table 2 summarizes all quantitative results.

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Poorly and Well-Functioning Couples Based on the results of the DCI, these two extreme groups were classified, and quantitative and qualitative results triangulated. Poorly functioning couples showed features of losing contact with each other, or not finding their way back to everyday life. Two of these couples reported that their previously good relationship dramatically worsened following the death of their child. Thus, a mother of an 8-year old, who died due to a rare neurological disorder with intensive care at home, including noninvasive ventilation overnight, reported, Our relationship had always been perfect; I have a pearl of a husband, no a diamond! We always decided things together. In the aftermath, it is so hard because our big task has been taken away from us. This task had led us to flourish; it was not a burden but a mountain that we mastered.

Her husband said in a separate interview: ‘‘Our life without the child has become much more demanding. Even if we grieve together, our exchange has become difficult; there are more conflicts. In spite of plentiful time, we cannot use it.’’ In contrast, one well-functioning couple, whose adolescent daughter died following relapsed leukemia, emphasized the stability of their relationship and how they succeeded in maintaining close contact with each other through fostering communication irrespective of circumstances. This husband underlined that the death of their daughter bound them together, led to fewer disagreements, and even increased their love. Characteristics of Parents with Overall Poor or Good Conditions In addition, we compared coping and the general condition of parents. For this we grouped parents who fulfilled criteria for poor or good condition within all three scales of well-being (SF-12, TRIG-D, and ADS). Four mothers and five fathers (including one couple from the oncology group and one from the nononcology group) fulfilled criteria for good condition, and five mothers and four fathers (including one couple from the nononcology group) met criteria for poor condition. Within the interviews, parents in the poor condition group reported that they had had difficulty in accepting their child‘s illness, and thus, could reflect that even though they had been informed that their child would die, did not feel prepared when the child actually died. With respect to communication, these parents were prone to not speak openly with their partner or in front of others, even during the illness of their child. One couple who had experienced the trauma of an unexpected heart defect shortly after the birth of their first child and lost her unexpectedly when she was several months old,

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E. BERGSTRAESSER ET AL. TABLE 2 Measurements of Parents in the Oncology and Nononcology Group Oncology Measurement Physical Health (SF-12a) M SD Range Psychological Health (SF-12a) M SD Range Grouping Psychological Health Quartile < 25 Quartile > 75 Depression (ADSb) M SD Range Grouping Depression (ADS) Quartile < 25 Quartile > 75 Intensity of Grief (TRIGc) M SD Range Grouping Intensity of Grief Quartile < 25 Quartile > 75 Dyadic Coping (DCId total score) M SD Range

Nononcology

Mothers (n ¼ 13)

Fathers (n ¼ 12)

Mothers (n ¼ 7)

Fathers (n ¼ 8)

54.7 2.9 49.9–58.6

53.3 4.1 42.3–57.6

52.5 4.8 42.8–56.9

52.7 5.3 42.4–58.7

46.7 8.5 28.8–55.9

51.2 6.5 39.3–58

51.4 4.9 43.4–56.1

46.2 10.2 32.3–57.1

52.3 57.4

51.3 56.1

49.7 55.7

49.4 55.8

(n ¼ 11–12) 15,6 9.7 1.0–31

(n ¼ 14) 10.1 8.7 1.0–34.0

(n ¼ 6–7) 10.7 7.8 4.0–24.0

(n ¼ 8) 14.3 11.9 1.0–36.0

6.8 24

4 14.3

4.0 17.3

4.5 23.8

2.2 0.5 1.8–3.5

3.0 0.6 1.9–4.1

2.9 0.5 2.2–3.8

3.0 1.0 1.5–4.7

2.1 3.0

2.6 3.4

2.4 3.3

2.2 3.7

(n ¼ 12–13) 128.7 20.1 96–160

(n ¼ 14) 125.2 19.9 92–163

(n ¼ 6) 118.1 17.9 86–137

(n ¼ 8) 129.4 11.5 111–146

a

SF-12 Health Survey. German Version of the Center for Epidemiological Studies Depression Scale. c Texas Revised Grief Inventory. d Dyadic Coping Inventory.  p < .05 (Mann-Withney U Test). b

reported how their relationship suffered following her death (both met criteria for an overall poor condition): I am the one who talks—he is extremely withdrawn. We grieve totally differently. I want to talk but he doesn’t. We weren’t supporting each other. I suffered. I saw that I pulled him down. It didn’t work; now [two years later] it has become easier. It is possible that I didn’t talk much. I just didn’t answer, because I didn’t feel like it, I am more reserved. I can talk with my wife, but she talks more than I do. Sometimes I am just so tired that I don’t want to listen.

Partners of parents in ‘‘poor condition’’ experienced the decision to engage external support, such as psychotherapy, as a relief that also had a positive impact on their dyadic coping. By contrast, parents in good

condition could be characterized as having a welldeveloped concept of problem-oriented coping strategies. They tried to regard coping with the child’s illness as a task and realized early that this task was only manageable with the support of others. In addition, these parents more often reported anticipation of death and the positive, consoling effect of memories.

DISCUSSION In our study, dyadic coping of parents following a child’s death due to a progressive illness played a pivotal role in the grief process of the parents as a couple as well as on an individual level. Couples who reported a well-functioning relationship tended to show better coping strategies during bereavement than those who

ROLE OF DYADIC COPING IN PARENTS’ GRIEF

had already had difficulties in their partnership prior to the death of their child. Depending on the resources and vulnerabilities of couples, stress is known to affect relationships by the loss of joint experiences, weakening feelings of togetherness, decreased quality of communication, and poorer dyadic coping (Randall & Bodenmann, 2009). Fundamental prerequisites for successful dyadic coping were a well-cultivated communication style, the experience that conflicts can be handled, and respecting particularities in the partner, especially with respect to grieving. Through this intensive work and experience that started long before the child’s death, the marital stability of our interviewed parents even increased, which can be substantiated by several other studies (Barrera et al., 2009; Bohannon, 1990–1991; Giannini, 2011). Even if we did not study this in more detail, there were several mothers who could not talk with their partners about their grief and thoughts concerning the child to the extent they wished. Those who found alternatives for their need to talk, such as a friend, and accepted their husbands’ way of grieving did not seem to suffer more than those who had this exchange within their partnership. This is in line with two recent qualitative studies analyzing discreet silence about one’s loss experience, which could still be considered an adaptive response to grief (Hooghe et al., 2011, 2012). In addition, common dyadic coping seemed to form a basis for concurrently maintaining the bonds to the deceased child, and for integrating the memory of the dead child into their ongoing and forward-looking life, as has been elaborated by Walter (1996) and Toller (2008). It could be hypothesized that common dyadic coping is also helpful in the grief process itself. Through the provision of stability the dynamic process of oscillation between loss- and restoration-orientation, developed by Stroebe and Schut (1999), might be facilitated. Thus, for instance, parents reported that it could be relaxing to take time off from the pain of grief. However, this oscillation and dyadic coping in parallel may also be impeded in parents when the bonds to the dead child gain an exclusiveness that does not allow for a forward-looking life, as some husbands have described. One further and central element of common dyadic coping was the performance of rituals, particularly grave tending and celebrating the deceased child’s birthday. The importance of rituals also in respect to working through grief has been evaluated in depth and discussed by Toller (2008). Even in parents with generally poor dyadic coping, grieving and rituals were shared as their parental ‘‘togetherness.’’ Although they had many traits in common, there was a trend for mothers to show higher levels of grief and depression than fathers; in due consideration of the small sample size, this would be in line with other studies

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(Barrera et al., 2009; Rubin & Malkinson, 2001; Wijngaards-de Meij et al., 2005). Unexpectedly, mothers of the oncology group seemed to have even worse psychological health and higher levels of depression and grief. However, because of the small sample size, this should be interpreted with caution, although further exploration would be highly interesting. One influencing factor for this phenomenon may be the role of hope in the care of a child suffering from cancer and the experience of some kind of ‘‘failure’’ with its death. The diagnosis of cancer, particularly leukemia or lymphoma, generally allows hopes to rise due to the high probability of cure, which would rarely be the case when parents are informed of the diagnosis of an incurable neurological or metabolic disorder. An explanation for the overall worse condition of mothers compared to fathers may be the stronger bonding of a mother to a child, but also the role distribution between parents which, in general, allows fathers to ‘‘escape’’ into their professional duties, whereas mothers remain confronted with vivid memories of the child at home. Dividing roles and tasks in this way was perceived as being part of dyadic coping in the sense of planning, organizing, and thus preventing further (avoidable) stress, but also in the sense of supportive dyadic coping (solidarity, trust in the partner). However, for mothers who had not been engaged in a profession before their child’s death, it became an issue to find new tasks to overcome the loss of identity as a mother and ‘‘all-round manager’’ of a severely ill child. This was experienced as difficult; therefore, mothers depended on the support and acknowledgement of their partners. It has been shown that this ability to invest in life activities is a robust indicator of adaptation (Rubin & Malkinson, 2001). On the other hand, women could also have a positive influence on the coping strategy of their husbands. Similarly, Wijngaards et al. (2008) reported that the grief-adjustment process for men is related to the coping strategy of their wives. The more a wife is oriented toward rebuilding her life after the loss (restoration-oriented coping), the lower is the level of depression and grief in the husband. Several parents realized the impact of their dyadic coping prior to the illness and death of their child. In this context, it would be highly interesting to explore whether dyadic coping is ‘‘trainable,’’ as has been shown in couples who did not experience traumatic events (Bodenmann et al., 2006). If dyadic coping were trainable in parents of children suffering from life-limiting diseases, one question would be how to support parents in this direction, and another question would be whether the introduction of dyadic coping strategies should be a component of bereavement groups. Our results would imply that external support may be an important aspect of dyadic coping, particularly, supportive dyadic coping.

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Regarding gender differences, our results demonstrated some aspects of the diversity of ‘‘grief work’’ in mothers and in fathers. Mothers were more prone to share their feelings and thoughts with others, whereas many fathers preferred not to talk about their feelings with others. This is in line with the literature; for instance, Hopmeyer and Werk (1994) asked participants of different support groups about their expectations. Female respondents gave first place to ‘‘sharing feelings and emotions,’’ whereas this ranked 10th among male respondents, who ranked ‘‘learning how others solve problems like mine’’ as first. Limitations Our study has several limitations. First, it was a cross-sectional study. A prospective longitudinal design, starting during the palliative or end-of-life treatment phase, would be extremely interesting and valuable in better defining how these parents can be supported. However, this implies interviewing parents during an extremely vulnerable stage. Second, because of the purposive sampling, we may have tended to recruit parents who were ‘‘ready’’ to talk about the death of their child and how they coped with this loss as a couple and a family rather than parents who might have avoided speaking about their problems or who were in a poor general state because of extreme maladjustment. Third, our sample was too small to generalize our results to other cultures or ethnicities and to examine the role of the underlying disease, the influence of palliative care and the circumstances of death on individual and dyadic coping. On the other hand, this is the first study to explore dyadic coping with grief in parents whose child died due to a life-limiting illness. Using a mixed method design allowed the inclusion and combination of different perspectives. Furthermore, studying a relatively large and homogeneous group of parents with a qualitative approach allowed us to analyze some specific aspects of grief work, in particular looking at differences between subgroups of diagnoses, and extreme groups of well-being and coping. Implications for Future Research and Practice In terms of future research, it would be of interest to study whether dyadic coping is ‘‘trainable’’ to couples prior to or in grieving situations, as it is in couples who have not experienced traumatic events (Bodenmann et al., 2006). In a first step, this could be done in a small sample and with a longitudinal study design. Outcome measurements could include whether such training tends to strengthen couples, families, and individual well-being and function. In a second step, the influence of specific diseases, the

palliative and end-of-life care of the child, and circumstances of death should be evaluated. With respect to practice, our results, particularly the effect of acceptance of differences in individual coping styles between parents, and the importance of rituals to cope with the loss of the child, could have practical implications for professionals involved in the care and counseling of families who anticipate or have experienced the death of their child.

CONCLUSIONS Following the death of a child, dyadic coping in parents plays an important part in grief work and adjustment to bereavement. Dyadic coping in bereavement depends on the mutual respect, attendance, and tolerance of parents and seems to form a basis from which to concurrently maintain bonds to their deceased child, and to integrate the memory of their beloved child into their ongoing life. ACKNOWLEDGMENTS We thank the parents interviewed in this study for sharing their experiences with us. We thank the health care professionals who helped with recruiting the participants, as well as the research assistants for their support in the analyses of the interviews. We thank Heather Murray for her comments and suggestions on the language in the manuscript. FUNDING This work was supported by the Cancer League of Zurich, the Johanna and Werner M. Wolf foundation, and a donation by the UBS (a bank foundation).

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