Protective and risk factors in the grieving process among cancer-bereaved parents: A qualitative study

Abstract This Norwegian nationwide study explored cancer-bereaved parents’ perceptions of protective and risk factors in their grieving process. A total of 162 parents answered two open-ended questions 2–8 years after their child’s death due to cancer. Qualitative analysis revealed three main themes: memories of the child’s illness and death, going forward in life, and relationships—a resource and a barrier. The results support the perspective of going forward in life and accepting grief as part of life, contrary to the notion of “getting over” or “detaching” from the deceased child. Social support is also crucial for cancer-bereaved parents.


Introduction
Approximately 400,000 children and adolescents 0-19 years of age are diagnosed with cancer each year (Steliarova-Foucher et al., 2017). More than 80% of children with cancer are cured in high-income countries, whereas less than 30% are cured in low-and middle-income countries (Lam et al., 2019). A child's death is a devastating experience for parents, and they often show more intense grieving than other types of bereavement (Zetumer et al., 2015). Bereaved parents are at increased risk of developing mental and physical problems (Ljungman et al., 2015;Rasouli, Vegsund, et al., 2021;Rasouli, Aarseth Bo, et al., 2021). However, previous studies have reported inconsistent results regarding parents' grief. Some found that cancer-bereaved parents mostly adjusted and worked through their grief (Alam et al., 2012;Barrera et al., 2009;Vegsund et al., 2019). In contrast, other studies observed that parents did not adjust and therefore developed physical and psychological morbidities (Lannen et al., 2008;Ljungman et al., 2015;Rosenberg et al., 2012).
Several models of the grief process suggest that bereaved individuals go through different stages or phases. For example, the Dual Process Model of coping with bereavement has been proposed to understand better individual differences in how people come to terms with bereavement (Stroebe & Schut, 1999). This model identifies two types of stressors: loss-oriented (e.g., loneliness and sadness) and restoration-oriented (e.g., financial and family demands) stressors. It specifies a dynamic, regulatory coping process (oscillation). At times the bereaved will confront aspects of loss, and at other times they will avoid them, and the same applies to the tasks of restoration (Stroebe & Schut, 2010). According to this model, adaptive coping consists of avoidingconfrontation of loss and restoration stressors (Stroebe & Schut, 1999).
There are significant individual variations in how well parents adjust following their child's death; some people adjust and avoid severe health consequences, whereas others adopt poor coping strategies (Snaman et al., 2016a). Several protective and risk factors have been identified to explain these differences, which can be divided into intra-individual, inter-individual, and situational factors. Intra-individual factors are personal factors, such as coping style, gender, and hope for a cure. One parent's coping style may affect the adjustments of the other parent (Albuquerque et al., 2017;2018;Bergstraesser et al., 2015). For example, sharing grief helps bereaved parents cope better (Bergstraesser et al., 2015). Many bereaved parents have also highlighted the importance of maintaining a bond with the deceased child to ease their adjustment (Barrera et al., 2009;Gerrish & Bailey, 2020;Snaman et al., 2016a). In contrast, grief increases for both parents if they avoid talking about the loss with one another (Stroebe et al., 2013). Lichtenthal et al. (2020) observed that most cancer-bereaved parents experience regret, which is often related to cancer treatment decisions and leads to distress. Moreover, bereaved parents with lower meaning making ability have more severe normative and maladaptive grief symptoms (Lichtenthal et al., 2010).
Inter-individual factors involve or take place between individuals, such as support from family, peers, and healthcare personnel. Previous studies have shown that the perception of receiving adequate support from one's family and peers, self-help groups, and healthcare personnel can facilitate the grieving process (Alam et al., 2012;Rasouli, Vegsund, et al., 2021;Rasouli et al., 2022;Snaman et al., 2016aSnaman et al., , 2016b. In contrast, a lack of communication and isolation from friends and family have been found to make the grieving process more problematic (Barrera et al., 2009).
Situational factors include circumstances related to the disease period and death. Illness-related factors, such as the perception of medical care and the child's pain and anxiety during the illness, may affect parents' long-term grief (McCarthy et al., 2010;van der Geest et al., 2014). For example, sudden death is related to complex grief reactions (Morris et al., 2019). Additionally, parents have an increased risk of psychological problems when their child dies in a hospital rather than dying at home (Goodenough et al., 2004).
As mentioned above, the literature on cancer bereavement has shown a considerable variation in adjustment among bereaved parents following their child's death and identified several intra-individual, inter-individual, and situational factors associated with the outcomes of the grieving process. However, previous studies have mainly investigated protective and risk factors associated with short-term grief in small convenience samples or in bereaved parents in general. These factors have not yet been investigated thoroughly concerning the long-term grieving process of cancer-bereaved parents. Therefore, to address these shortcomings, this study aimed to explore the protective and risk factors that affect the grieving process of bereaved parents two to eight years after their children have died from cancer.

Design
The data used in this qualitative study were taken from the Norwegian national study "Factors contributing to mental health among siblings and parents after the loss of a child to cancer." This nationwide project investigated the experiences and psychological health of families (parents and siblings) after a child's death due to cancer using a retrospective self-reported survey. The Regional Committees for Medical andHealth Research Ethics (2014/1997/REK Midt) approved this cross-sectional study. All participants provided written informed consent before participation. The data were collected from July to October 2017.

Participants
We identified 473 parents who had a child (<24 years old) who died from cancer between January 2009 and December 2014. The inclusion criteria were Norwegian residency and speaking Norwegian. An invitation letter with a consent form was sent to all parents. A reminder was sent to the 214 parents who did not respond within one month. Only the parents who returned the consent form received a hard copy of the questionnaire with a prepaid envelope by mail. Fathers and mothers received the questionnaire separately, allowing them to answer independently. In total, 162 parents voluntarily (no incentive given) filled out and returned the completed questionnaire (response rate ¼ 34.9%).

Data collection and analysis
Two open-ended questions were analyzed using thematic analysis (Braun & Clarke, 2006). The first question was, "What has helped you in your grief after the death of your child?" The second question was, "Is there something during your child's illness period or after death that has made your grief difficult to work through?" Each question had a half-page blank space for the participants to answer the question in detail. The approach of this study was based on a critical realist approach (Patom€ aki & Wight, 2000) with a contextualist epistemology (Madill et al., 2000). The critical realist approach was used to view the material and ideational as a whole: that is, understanding rather than merely describing social reality (Patom€ aki & Wight, 2000). While there are factors that help or make grieving more complicated, the participants' interpretative resources and sociocultural meanings mediate their answers, and thus their answers are based on their subjective versions of reality.
The study adopted a semantic and inductive approach. One author (ISØ) read the data line by line twice to identify meaning units and discover the participants' positive and negative memories and experiences. A digital codebook (Microsoft Excel) was used for data analysis. Preliminary codes were assigned to the data, which were later refined after all the data had been coded. Then, three research group members (ISØ, TR, MEE) held meetings to refine the coding and list of emerging themes and ensure that a consistent approach was applied to the data analysis. The codes were reviewed and compared with each other in order to create themes and sub-themes. We had some consensus meetings during the data analysis. If there were any disagreements in coding between the authors, the original transcript was checked and discussed until a consensus was reached. Finally, the data were reviewed and discussed as a whole. Data saturation was considered to have occurred when no new themes were found.

Results
The characteristics of the participants are shown in Table 1. Most participants were female (60.5%), employed, and had a college/university education. Among the participants, there were 55 couples (n ¼ 110, 67.9%), that is, parents of the same child. Accordingly, many parents may have shared similar experiences during their child's illness and after their child's death. Table 2 presents a summary of the answers to the questions. The majority of the participants (81.8%) answered both questions. The length of answers varied; some wrote full sentences while others answered in keyword form. However, the majority had written a few sentences (a paragraph) for each question.
The answers to both questions were coded together to obtain more information about what the parents perceived as protective and risk factors in the grieving process. Accordingly, three main themes with subthemes were identified after analyzing the answers: memories of illness and death (acceptance and painful memories), going forward in life (living everyday life and living with grief), and relationships-a resource and a barrier (social support as a resource and lack of social support as a barrier).

Memories of the child's illness and death
This theme captures parents' memories of the illness and death of their children and how parents relate to these memories in different ways. It encompasses both positive and painful memories, looking back with acceptance and without regret, and looking back with complicated feelings and questions about how things could have turned out differently.

Acceptance
Some parents found it to be healing to remember both positive and painful memories from the children's illness and death and think back with acceptance (n ¼ 36; 24.3%). This sub-theme encompasses both events that made acceptance easier, such as thinking no mistakes were made, and the child had little pain and choosing to let go and accept the things that happened. Perceiving the care provided by health personnel as good and supportive was beneficial for some parents. Knowing the factors related to the disease and the cause of death was also helpful for some parents (e.g., their child did not die due to a criminal act). Feeling that they did everything in their power to support the child was also perceived as helpful: "[What helped was] thinking about the fact that we did as much as we could for him. We filled him with love and helped night and day". Another parent stated, "We got to show her how much we appreciated her and did many nice things together." Some parents reported that the relief they felt because their child's pain was gone was also helpful in the grieving process. One parent expressed how accepting the situation despite the frustrating events was helpful: "We have been realistic and understood that this happened. We chose not to use more energy on the things we can't control. There have been frustrating and irritating episodes in the illness-was the treatment and care good enough? It took a lot of energy while the child was alive.
[We] chose not to focus on this, [as] we won't get our child back."

Painful memories
Over one-third of the parents (n ¼ 59; 39.9%) indicated that painful memories hindered the grieving process. It was challenging for many parents to think about their child's pain without being able to take it away: "The hardest part was probably to see the death anxiety of my daughter, and not being able to take it away." Another parent stated, "We had to see his severe pain during the illness and when he was dying. I have trouble sleeping at night, get flashbacks where he's screaming in pain, set in my memory and make it difficult to find peace." Some parents reported that the painful memories were particularly powerful during the first years following their child's death: "The fact that she got so sick and lost function has been difficult to bear-it was like a movie that ran almost constantly during the first years." Parents also mentioned that different feelings complicated their grieving process, such as disappointment that there was nothing to do about the illness, guilt, bitterness, regret, and doubt about the decisions they made during the illness. Many parents also indicated that complications caused by healthcare professionals hindered their grieving process: "I think a lot about all the mistakes that were made during treatments and complications that could have been avoided."

Going forward in life
This theme focuses on current and future life rather than on the past. It includes returning to everyday life with work, leisure activities, caring for surviving children, as well as the fact that grief and memories of the deceased child are part of life ahead.
Living everyday life About one-third of the parents (n ¼ 48; 32.4%) indicated that different aspects of activities of daily life were helpful in the grieving process, including work, leisure activities, and chores. Some parents elaborated on their answers and explained that daily life activities allowed them to look ahead and live life: "In early days, it was important to engage in some projects to focus on life ahead, not backward." Further, some parents stated that such activities helped them think about something other than grief: "When you are at work, you think a little about it, and then you think about other stuff regarding work." Some parents also reported the value of having other children who needed them, which gave them no other choice but to focus on life here and now and gave them a reason to keep on living: "My biggest help and therapy has been my little son, who has been the reason for getting up every single day, get out of the house and do all the normal stuff." However, some parents (n ¼ 19; 12.8%) reported extra burdens in their lives that made the grieving process more complicated, such as having trouble at work, getting back to everyday life too soon, lacking economic support for sick leave, and dealing with struggling family members who needed them: "Many people died the year our boy died; two good friends and three elderly family members. Therefore, there was a lot to digest for us!" Another person stated, "During the period when the child's mother was mentally depressed made life and grieving harder." and Note. The percentages in the "Total" column are derived from n ¼ 148, while the percentages in the "Mothers" and "Fathers" columns are derived from the corresponding "Total" column.
"When financial challenges came, we had to go back to work. Grieving gave no right to sick leave." Living with grief Most parents (52.0%) stated that accepting grief as a part of life was another factor in moving forward. The parents highlighted the importance of accepting that the grief would never go away; therefore, they must learn how to live with it: "We have to learn to live with the loss and emptiness because life goes on anyway." They felt the child's presence in their life and found comfort in talking about the child. Some parents said that frequent visits to the graveyard were helpful. They also indicated that believing that the child was in a better place and that they would see each other again gave them comfort. Many parents expressed that looking back at their child's good and painful memories was valuable. Moreover, they emphasized the need to focus on the positive and healthy aspects of life and feel grateful for their child's life: "Good memories from the time we spent together mean a lot." Two mothers and two fathers (2.7%) had issues with the phrase "to work through the grief." They claimed that it is impossible to work through such grief fully: "It [the grief] is with me every day-fortunately-and sometimes I think that coping with the grief equals forgetting." Another parent stated, "To work through grief, I understand what it means, but it is about living with [grief], going forward with [grief]." Furthermore, they stated that the intensity of grief changes and gets milder over time: "The grief does not go away, but it changes over time. Then it is possible to carry it in life forward without having a constant, painful weight inside." Some parents (n ¼ 20; 13.5%) reported that time helped them with their grief. However, others stated that the pain they felt and the feeling of missing their child was just as intense and sometimes even intensified over time. The parents found it helpful to learn about grief from health professionals, remain open to their own grief, reflect, write, and take time for themselves.

Relationships-a resource and a barrier
According to the third theme, the parents perceived efficient social support as very helpful, while they felt a lack of social support or complicated relationships hindered their grieving process.
Social support as a resource The majority (n ¼ 108; 73%) of the participants stated that social support was helpful in the grieving process. Their answers varied; some parents listed different sources of social support, others described how social support had helped them, and others said the support quality was crucial. The most common source of social support was family (n ¼ 70, 47.3%), including a partner, siblings, parents, and other children. Other sources of social support were friends and coworkers (n ¼ 52, 35.1%), professional helpers and support groups (n ¼ 39, 26.4%), other bereaved parents (n ¼ 9, 6.1%), and pets (n ¼ 5, 3.4%). Support qualities considered restorative were conversation, care, support, stability in relationships, and shared experiences: "The best has been to talk to other people who have gone through the same. We talk the same language." Some parents expressed the need to talk about their deceased child and viewed doing so as beneficial: "Being with friends has been important so that they dare to talk about her." Several parents said that learning about grief from health professionals was helpful. They discovered that grieving is an individualized process, and there is no right or wrong way to grieve. The parents appreciated professionals who did not have preconceived notions about how they should act: "The psychologist focused the conversation on how I was feeling, not how I should be feeling." Lack of social support Although many parents found relationships helpful in terms of social support, some (n ¼ 31; 20.9%) indicated that they could be a barrier to the grieving process (either having troublesome relationships or experiencing a lack of support). Some parents received less social support than they expected from family, friends, and professional helpers: "We have many friends, but after the funeral, it got really quiet. That was difficult and unexpected". Another person stated, "The complicating factor is going a whole year without anyone offering professional help. The health care system did nothing, not even the general practitioner (GP). There should have been someone who understands you're in shock after a child dies." A few parents (n ¼ 7; 4.7%) experienced breakups or difficulties in their romantic relationships and viewed them as detrimental to the grieving process.

Discussion
This Norwegian national study employed a qualitative design to explore protective and risk factors in the grieving process among 162 parents 2-8 years after their children died from cancer. Fifty-five couples (110 individuals) participated in this study, which may have impacted this study's findings. Three main themes were identified, with two sub-themes for each main theme. The findings suggest that intrapersonal and interpersonal processes are important to the adjustment process of parents after losing a child (Wijngaards-de Meij et al., 2008). Interestingly, in the present study, bereaved fathers and mothers reported similar coping styles, contrary to previous studies (Alam et al., 2012;Stevenson et al., 2017). This difference may attribute to methodological variations. The current study had a larger sample size than those studies, and nearly 40% of the overall sample consisted of bereaved fathers. Besides, about 69% of the sample were couples, and research on relationships underlines the interdependence of marital partners (Lewis et al., 2006). Moreover, couples experience a similar situation during their child's illness. Therefore, couples may affect and adopt each other's coping styles, which may explain this finding.

Memories of the child's illness and death
The sub-themes were "acceptance" and "painful memories." Acceptance of what happened and how it happened was essential for parents to adjust better to the death of their child. Bereaved parents reported that remembering both positive and negative memories of the illness with an accepting attitude was helpful for the grieving process. Conversely, rumination on painful memories made grieving harder. Several parents stated that knowing they did everything they possibly could as a family for their child helped them move forward in life, which supports previous findings (Vegsund et al., 2019). Accepting what happened is consistent with different meaning making models for coping with stressful life events (Neimeyer et al., 2002;;Park, 2010). These parents may have experienced post-traumatic growth related to resilience (Albuquerque et al., 2018). Previous studies have suggested resilience as an intra-individual protective factor in bereaved parents (Albuquerque et al., 2018;Vegsund et al., 2019). In particular, the perception of self, a sub-component of resilience, involves trusting one's decisions (Vegsund et al., 2019), which may relate to acknowledging one's treatment-related decisions and accepting what happened.
Parents also reported that health professionals' care for their children helped the grieving process. For instance, knowing that the child received the best possible treatment was viewed as beneficial and made it easier to accept the things that had happened. In contrast, doubting medical decisions and being aware of mistakes led to more bitterness and regret. Parents' perception of the quality of their child's medical treatment is associated with their adjustment following their loss (Hoven et al., 2020;McCarthy et al., 2010;van der Geest et al., 2014).
Part of the parents experienced painful memories with a high degree of distress, especially when they could not stop thinking about these memories. Circumstances such as the child's severe pain and distress caused the parents to experience adverse memories. According to the Meaning Making Model (Park, 2010), perceptions of the child's care and the child's severity of pain and distress increase the discrepancy between the parents' situational and global meaning. Lichtenthal et al. (2010) found that bereaved parents with a lower meaning making ability have more severe normative and maladaptive grief symptoms. Some parents even reported post-traumatic stress disorder (PTSD) symptoms, such as years of flashbacks and sleep problems. This finding supports previous research indicating a higher risk of developing PTSD in bereaved parents (Ljungman et al., 2015).
Cancer-bereaved parents also experienced regrets, often related to cancer treatment decisions. In Norway, the healthcare system is primarily a public sector, and hospitals and healthcare centers are funded and managed by the Norwegian Directorate of Health. Consequently, parents cannot choose treatment centers or top physicians for their children's treatment in this context. This may explain part of treatmentrelated regrets. Though healthcare services are almost free, and people do not have an economic burden considering treatment expenses.

Going forward in life
The sub-themes were "living everyday life" and "living with grief." Continuing life without the child's physical presence and accepting that grief would always be part of their lives were helpful for the parents' grieving process.
One-third of the participants indicated that returning to a "normal" life involving work and other daily activities was beneficial. This helped them stay in the present and look forward instead of remaining lost in the past. According to the Dual Process Model, these factors relate to a restoration-oriented coping style (Stroebe & Schut, 1999). This could also be interpreted as "having worked through" and "detached" from the loss, in line with Freud's theory (Archer, 2008). However, parents reported shifting between thinking about their loss and work tasks in the workplace, indicating that the loss was still on their minds. Additionally, the findings of this study indicated the value of having positive memories of the illness (i.e., not detaching entirely from the deceased child). These results further support the positive effects of shifting between a loss-oriented and restoration-oriented coping style (Albuquerque et al., 2017).
However, continuing with normal life could also make grieving worse. Some parents reported increased distress related to getting back to work too soon, having work-related conflicts, lacking economic support for sick leave, or dealing with other struggling family members. Bereaved parents experience more intense grief in the first few months following the child's death, although individual differences exist in their grieving process (Lannen et al., 2008;Morris et al., 2019). This could explain why some parents in this study needed more time to prepare for work and everyday life, but some individuals were ready for work sooner than others. Thus, while performing daily life activities may help cancer-bereaved parents work through their child's death, individual and situational factors might also cause distress and complicated grief.
More than half of the participants reported that living with and accepting grief were essential to function better in daily life. They felt relief in remembering positive and painful memories as well as in talking with the deceased child as if the child was still alive. The parents also reported that being grateful for their time together was helpful. These reflections support the notion that a continued emotional bond with the deceased supports healthy adjustment following such a loss (Foster & Gilmer, 2008). The parents may have undergone a meaning making reconstruction (Neimeyer et al., 2002;;Park, 2010) or post-traumatic growth (Calhoun et al., 2010) as they accepted and integrated the loss experience into their lives.
Some parents in the present study reported that their grief declined over time. Time since the loss was a helpful situational factor in other studies, leading to reduced anxiety and depression seven years after the loss (Kreicbergs et al., 2004) or the ability to work through grief six years after the loss (Vegsund et al., 2019). However, why time is helpful remains an open question. Does time itself heal wounds, or is it part of a more complicated process involving intra-and inter-individual factors? The latter seems likely, especially considering the large individual variations in psychological adjustment following a loss, with some people struggling for years and exhibiting complicated grief reactions (Lannen et al., 2008;Morris et al., 2019). Nevertheless, the evidence suggests that grief takes time, even for parents who adjust well to their loss.

Relationships-a resource and a barrier
The last and largest theme consists of two sub-themes: "social support as a resource" and "lack of social support." This theme emphasizes the importance of social support as a protective factor, whereas the lack of social support is a risk factor in the grieving process. Depending on the context, social support can be defined differently, such as support from family, friends, colleagues, and healthcare professionals.
Most participants described social support as valuable for the grieving process. In the present study, support from family members was considered exceptionally important in the grieving process. Similarly, another study found social support from family members to be a crucial protective factor (Kreicbergs et al., 2007). There was no clear gender difference in the sources of support, in contrast to the study of Kreicbergs et al. (2007). In addition, supports from friends and healthcare professionals were beneficial. Participants also stated that interaction with other bereaved parents was helpful, especially for those with limited social support. Support from other bereaved parents offers opportunities for shared experience, processing grief, and vision into the future (Helton et al., 2021;Snaman et al., 2016b). These findings are consistent with previous research suggesting that social support is a significant protective factor for the adjustment of cancer-bereaved parents (Alam et al., 2012;Barrera et al., 2009;Snaman et al., 2016aSnaman et al., , 2016b. Interestingly, bereaved parents also mentioned having contact with pets as helpful. In Norway, it is common to have pets, particularly dogs, at home. The participants also reported that a lack of social support was a risk factor in the grieving process. In particular, lack of communication and isolation from friends and family made grieving more difficult for the parents (Barrera et al., 2009). This underlines the importance of long-term social support instead of only providing support for a short period after the loss.

Implications
Practitioners and researchers can use the findings of this study to help cancer-bereaved parents work through their grief. There are also special programs that institutions and practitioners can use. For example, parents with limited social support may benefit from the Parent Mentor Program (St. Jude Children's Research Hospital), which matches newly bereaved parents with mentors who have also lost children. Mentors provide support, encouragement, and insight, helping families of newly diagnosed patients navigate their treatment journeys. Additionally, meaning-centered grief therapy has been developed to help bereaved parents recognize opportunities for meaningful experiences as they learn to live with their deep and painful grief (Lichtenthal & Breitbart, 2015). It is important to ensure that families are provided with grief resources and have access to psychosocial support early in their child's illness journey to reduce stigma and help them during this difficult time.

Methodological considerations and future directions
The main strength of the current study was that it used a qualitative approach to analyze many responses from a national sample of cancer-bereaved parents. This study also had some limitations that need to be addressed. First, it employed a retrospective, cross-sectional design. Written responses provide less information than interviews, and some participants chose not to answer the open-ended questions. Although this was a nationwide study, there was a modest response rate (34.8%). Those who did not participate in this study might have had particular features. The participants were mainly mothers (60.5%), which makes this study somewhat biased toward mothers' views on protective and risk factors in the grieving process.
Future research should employ qualitative interviews and longitudinal studies to investigate the protective and risk factors and coping strategies changes among cancer-bereaved parents. This could help inform better strategies for helping parents accept their child's death and engage in daily activities. Moreover, future research should develop tailored early interventions to facilitate resolution and adjustment in this bereaved population. Further, it is necessary to evaluate the effects of existing programs (e.g., meaning-centered grief therapy) on poor long-term outcomes, such as unresolved grief and psychosocial sequelae, in bereaved parents, especially in the subset of parents with low social function.

Conclusion
This nationwide study explored perceptions of protective and risk factors in the grieving process among Norwegian bereaved parents 2-8 years after their child's death due to cancer. Based on the themes identified, practitioners should encourage bereaved parents to return to normal daily functioning while holding on to memories of their deceased child. Notably, the findings indicate that parents' distress may increase if this process is rushed. Further, parents with limited social networks or without social support should receive help from professional counselors or have the opportunity to meet other bereaved parents.