The sample comprised 6 couples, 13 lone mothers, 4 lone fathers and 2 primary parental figures (N = 25 parental units). The mean age of the participants was 49.35 (SD = 10.47). All participants were Singapore citizens or Permanent Residents. Table 2 provides an overview of the participants’ sociodemographic details.
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Figure 1 shows the major milestones in participants’ lived experience of their child’s chronic life-threatening illness and death, starting from the diagnosis of their child’s chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child’s death and the losses which accompanied the death (Theme 3) and participants’ experience of posttraumatic growth as an outcome of their journey (Theme 5). Figure 1 further describes the deliberate behaviors or ‘rituals’ that aided participants to regain power over their lives (Theme 2), helped them to sustain an intimate bond with their child beyond death (Theme 4), and aided participants’ transcendence of their loss by deriving positive outcomes from their experience (Theme 6). Finally, figure 1 denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7).
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Theme 1: Diagnosis and Caregiving
This refers to the reactions that surfaced in participants when they received news of their child’s chronic life-threatening illness and the struggles that they encountered through the illness trajectory and end-of-life.
Financial setback (Number of interviews theme appeared in: N = 19). Survival needs such as financial worries emerged as the most critical concern for participants after their child was diagnosed with a chronic life-threatening illness, as seen from the N. Participants drew attention to the high cost of treatments.
“One pill for cancer did not come cheap; one hundred dollars a day, and that added up to three thousand dollars a month.” (P11, father)
Caregiving duties often required participants to quit employment, further adding to their financial challenges.
“Ever since my son had fallen sick, I had to stop working […] then my husband’s income wasn’t stable, so we started having financial issues.” (P13, mother)
Emotional turmoil (N = 16). Participants described the dismay and disbelief which accompanied the initial diagnosis, and their worries about the long-term implications of their child’s condition.
“Shocked […] we really cannot believe he was that sick.” (P23, primary parental figure)
“I want to know, two years later what is going to happen to her, five years later what is going to happen to her. Can she blend into society, would she be able to go to school?” (P17, mother)
Other participants expressed feeling in limbo because the process of diagnosis could be complex and prolonged.
“Me going through this for the first time, I was totally lost. And at that time, they [doctors] are not able to share more things with me. So, I feel like […] don’t know who to look for.” (P22, mother)
Care diffusion (N = 14). Participants discussed that caring for a child with chronic life-threatening illness could be an all-consuming task which resulted in them neglecting the needs of their healthy siblings. Some depended on the support of family and friends to look after healthy siblings.
“I neglected my son a little bit as I let go a lot to other people to handle him and I focus more on my daughter.” (P10, mother)
Participants also spoke of the challenges that their healthy siblings faced and regretted not having the time to attend to them.
“We went out together. I was holding her [sick child] hand, then my youngest daughter told me, ‘Mummy why every time you only hold JieJie (elder sister), you never hold me […]' Then I explained to her […] She does understand, but understanding is one part […] Feeling is another thing.” (P3, mother)
Social apathy (N = 11). Participants described the societal indifference and ignorance towards their challenges.
“The teacher [of the healthy sibling] was like ‘stop with all your stupid family story […] don’t ask for any sympathy or be attention seeker.’ ” (P14, mother)
Many sick children were at the receiving end of derogatory remarks regarding their illness-related appearances, while their family members endured insensitive social attitudes.
“The children so-called laugh at her […] said in Chinese words ‘botak’, [which] means bald.” (P3, mother)
Theme 2: Power and Control Oriented Ritualization
As participants began to accept their child’s illness and integrated treatments and hospital visits into their lives, they adopted rituals to bring order into their seemingly uncontrollable lives.
Spousal interdependency (N = 18). Participants developed a ritual of alternating caregiving responsibilities with their spouse, so that the child’s primary caregiver could take time off for self-care.
“When he (spouse) was not working, or when he had a few hours off, he would look after him (sick child), then I would go out for a while. Even if I only get to walk around at the lobby [of hospital], I was happy […] I had to leave for that period, for myself to take a breather.” (P13, mother)
Participants reflected that spousal support was typically in form of pragmatic assistance and solution-focused conversations rather than in-depth discussions about inner thoughts and feelings.
“Talk, not so much. [We were] physically present [for each other] as much as possible. Functional needs first, survival mode. [We] talked a bit about the diagnosis, or what we thought was the best place to go or next step to go on.” (P1, father)
Illness literacy (N = 15). Participants employed varied resources to obtain more information about their child’s condition.
“We went there (Singapore Cancer Center). I did my homework. I asked the doctor dozens of questions.” (P2, mother)
They felt that learning about the illness would help them to collaborate with medical professionals and make informed decisions that were most appropriate for their child.
“You research some stuff, you try to bring up to the doctor […] like for example, we brought up the use of the Cough Assist and eventually they allowed us to use it.” (P19, mother)
Experience sharing (N = 13). Participants often turned to parents of other children suffering from similar health conditions to seek support and exchange knowledge.
“We talk to them (parents of other sick children) [about] what are we expecting, the daily needs that we need to do for them […] if our equipment breaks down, what do we do?” (P19, mother)
Parents who were more experienced played the role of comfort-providers for “newcomers” who were experiencing heightened levels of anxiety and uncertainty.
“We extended our help or talked to those ‘newcomers’ warded in the hospital. We spoke to them about our experience, such as the procedures. Most of them didn’t know what to do […] so we shared our experiences with them.” (P4, father)
Relational coping (N = 10). Participants faced their child’s chronic life-threatening illness together with their family, which enhanced their perceived power in coping with illness-related challenges. Often, this translated into harnessing strengths of different family members so that each person could feel involved in caring for the sick child.
“I want my parents to feel that they are involved in making him recover by cooking for him […] because we [husband and wife] don’t have time to cook.” (P2, father)
By spending quality time together as a family, participants coped with the challenges of their child’s illness such as prolonged hospital admission.
“Daddy makes sure that at any point of time where they have free time, he will grab the opportunity and bring everybody together to the hospital. Although it’s not a happy place but it’s where the family would be together.” (P6, mother)
Participants also conveyed their emotional and practical availability to other family members who found it difficult to care for the sick child.
“My daughter needed help at that time, she was alone […] She has to work and then who’s going to look after my grandson? So, I felt it is my duty to look after him.” (P23, primary parental figure)
As their child’s illness worsened and hopes for recovery were replaced by preparation for mortality, participants continued to engage in rituals which helped them to feel a greater sense of control over their lives. The next two sub-themes reveal the ways in which participants asserted their power in the final stage of their child’s life.
Celebrating life (N = 18). Participants endeavored to help their child celebrate life, transcend illness-related challenges and fulfill their child’s desires.
“We went to shop for baking stuff, after which booked a café. Then there was a so-called chef and all the waiters came down, taught him cake-making. There was a party, everyone joined, made ice cream.” (P25, father)
They thus experienced the satisfaction of fulfilling their parental role by spending quality time with their child and celebrating life in his/her final days.
“Try to fulfill whatever wish they wish for […] once they are gone, you are not able to do all these things.” (P5, mother)
Final farewell (N = 22). Participants continued to fulfil their parental role in the final moments of their child’s life through comforting acts and alleviating his/her fears about dying.
“When I hold on to him, when daddy hold on to him, we spoke to him and we told him that it was going to be alright.” (P7, mother)
For children whose death was predicted from the gradual decline in their body functions, participants planned for their child to be brought home from the hospital and for loved ones to visit and bid goodbye.
“I called everyone […] they came to say their final goodbyes to him […] Then Saturday, he left us at 3 am.” (P13, mother)
Participants whose child had an unexpected death were regretful for not having the time and space for a farewell.
“I feel very guilty […] I’m thinking that I’m not beside him at that time, maybe we don’t know what is in his mind. Maybe the few days before he passed away, I can take leave and stay with him […] I didn’t know he will leave me very soon, I thought it was going to be like every day.” (P20, mother)
Theme 3: Loss and Mourning
In the aftermath of their child’s death, participants gradually began to process the complex amalgamation of emotions that accompanied the loss.
Empty space (N = 18). Participants described the loss of their child as the creation of a void that could never be filled.
“There’s always that empty space here. Even after he was buried, sometimes my husband says, ‘Eh we used to call them all 3 to come for dinner right, now we can only call 2.’ ” (P8, mother)
This void was particularly pronounced for the parent who was the child’s full-time primary caregiver.
“Like every other day you’ll be planning your schedule because he has medical appointment […] and now suddenly you no longer have to plan for him.” (P7, mother)
Bereavement brought along the realization that participants had lost not only their child but the entire world they had constructed around caregiving.
“The house became very quiet. When she was around with the equipment all that, at least you can hear the sounds of the machines beeping […] so after that suddenly no machine sound no nothing.” (P19, mother)
Grieving styles (N = 10). Parents in a spousal relationship noted that they had different ways of mourning their loss.
“He is quieter about it and I want to talk about it. But then when I want to talk to him about it, he doesn’t, he’s not ready actually.” (P6, mother)
Participants reflected that such variation could reflect personality factors and the nature of the parent’s involvement in raising the child rather than gender.
“Maybe it’s not just about men and women. It’s about character… my husband likes to talk. I don’t like to talk much. I write […] but if I were a stay home mother, that bond would be very close. But I don’t. So that feeling is not the same as him. He has many beautiful memories rather than me. He feels the loss more than me.” (P15, mother)
Disenfranchised grief (N = 8). The intensity of bereaved parents’ anguish and the significance of their loss often did not receive societal validation.
“They told me, ‘You should try for another child with your husband.’ I don’t want to.” (P18, mother)
Some participants recalled that outward expressions of their intense loss were deemed inappropriate.
“Every day I sit alone, I cry […] my son notices. He says, ‘Please, what you looking and crying for? Over already now.’ ” (P9, primary parental figure)
Theme 4: Continuing Bonds Oriented Ritualization
Maintaining psychological and spiritual proximity with their child helped participants cope with the sense of helplessness created by his/her death.
Narrative reprocessing (N = 20). Participants ascribed a sense of personhood, meaning and purpose to their child’s life through an evolving narrative of his/her life story.
“He got to spend time with his family, he got to celebrate his father’s birthday. He got his friends to come and visit. He got to make sushi with one of his friends who had the same diagnosis as him.” (P8, mother)
Many participants spoke with pride about the strength and fortitude that their child displayed despite the pain and suffering that he/she endured.
“He was pretty strong even though how bad the chemo went, the side effects came in, vomiting all this, he is accepting it quite well.” (P2, father)
Remembering their child’s inspirational attributes thus helped participants search for personal growth in their loss.
“And through these 15 years, along the way, when I’m down and out, I look at her. Why is it she (deceased child) can enjoy life even in that state? Why am I so upset over small things or things that I can control, or I can get rid of?” (P17, mother)
Relationship preservation (N = 12). Participants continued to acknowledge and preserve their relationship with their deceased child regardless of his/her physical presence.
“When people ask me how many children I have, I will reply saying, ‘I have two children.’ ‘Where’s the older child?’ ‘He passed away.’ I don’t want to say that I only have one son now. I want to acknowledge him.” (P13, mother)
Participants also shared their wish to memorialize their child in a way that the world would learn about his/her positive attributes.
“I want people to read his story, his goodness, whatever he went through, the positive things that we achieved […] I want to put all that into one book.” (P15, mother)
Theme 5: Transformation and Transcendence
This refers to the experience of personal growth and transformation in participants because of their endeavors to transcend the trauma of child loss.
Acknowledging mortality (N = 11). Participants reported that the experience of child loss had triggered reflection about the fragility of human life in a world that is unpredictable and uncontrollable.
“Life can be too short. God can just take [loved ones away] anytime.” (P6, father)
This often resulted in re-evaluation of their lives and greater appreciation of aspects they had previously taken for granted, particularly their personal relationships.
“I’m very career driven in the past. Now family is more important… the time I spend with my daughter, the time I spend with my wife.” (P25, father)
Enhanced gratitude (N = 11). Participants spoke of their increased ability to observe and appreciate positive aspects of their lives.
“We’re very lucky to be here in Singapore, we got so much help from people, all walks of life, from different kinds of races also.” (P23, primary parental figure)
This felt that this in turn enhanced their sense of well-being, reduced feelings of regret and facilitated acceptance of the loss.
“It is not a sudden death. It’s a period where you can have that bonding, that moment, that quality time, instead of just being abruptly taken […] God gave you that period you have to be with her, enjoy every second so you don’t have regrets.” (P14, mother)
Inspired philanthropy (N = 9). Participants found that serving others helped them to find meaning in their loss.
“She [wife] does a bit of administration for them [welfare organization] […] Some of our weekends are spent going to some of the beneficiaries’ family […] we found great meaning in it so yeah, we help out in this cause.” (P19, father)
They explained that the challenges they had encountered during the caregiving period had made them more sensitive to the needs of others, which now drove them to help others whenever an opportunity presented itself.
“We were also moving with wheelchairs and we had difficulties. So now I see old people moving on their own, I go and help automatically.” (P12, father)
Others described feeling indebted to the organizations from whom they had received support, and now felt it was their duty to help in whatever way they could.
“Right now, I volunteer at the center two times a week […] My grandson had benefited a lot from the session in school, received a lot of love from the staff and teachers from the center, so I feel I have to give what I can.” (P23, primary parental figure)
Finding strength (N = 8). Many participants reported greater strengths and resilience as an outcome of their challenging journey of caregiving and loss.
“I realized that I have become more cheerful […] A lot of things are actually unimportant, and I can choose not to care about them […] I felt that my worldview has gotten bigger too.” (P13, mother)
The ability to persevere through the challenges they had encountered during caregiving for their sick child brought about realization of the immense strength they had within themselves.
“After all this, I’m really a warrior mother. I’m not like others, I’m more than others so I can do much better than others.” (P20, mother)
Theme 6: Posttraumatic Growth Oriented Ritualization
The intense pain of child loss served as a catalyst for positive change and growth outcomes in participants.
Transcendental meaning (N = 23). Participants’ transcended their grief by focusing on the bigger picture beyond their child’s death. Such transcendental meanings were sometimes person-centric, wherein participants’ personal values and beliefs shaped their understanding of their child’s death.
“Even though today he passed away, tomorrow the sun still rises. So, all of you got to accept the fact that he is not going to be here. Things carry on.” (P2, father)
For other participants, faith-based beliefs contributed to their perception of child loss.
“The greatest comfort I have is that I know she is with Jesus.” (P3, mother)
Still others viewed their child’s death as an end to his/her pain and suffering.
“If you cannot make him better, you take him away […] you take him away rather than I see him suffer.” (P15, mother)
Intrapersonal coping (N = 14). Participants discussed their personally relevant strategies to cope with their grief as well as express and process their emotions.
“It’s only when I drive, I go back from [location name], it’s a long way right? 1 hour, 35 minutes sometimes. That is where (makes crying sound).” (P15, mother)
“The nearest park here is [name of Park]. So, there is a favorite spot for me that I will go to. I’ll spend time reading the Bible, I’ll bring a book and start to write […] as I write, I cry.” (P1, mother)
Others explained that they coped with their grief by occupying their time with activities.
“Through work, I gradually learnt not to think about him. At home, I occupy myself with house work or I go out and walk around […] this is how I get by day by day.” (P18, mother)
Empathetic community (N = 13). Participants found it helpful to actively participate in support groups that brought them closer to other parents with similar grief experience.
“We have a closed group of us grieving parents. I gained help from there. They are all parents who lost their children in any way, in any form, in any age. But all feel the same pain.” (P3, mother)
They explained that the distinctive nature of a bereaved parent’s emotional pain could only be validated by somebody who had experienced it firsthand.
“Only those who have gone through this would understand.” (P18, mother)
Participants who had come to terms with their loss found meaning by joining such groups, as a means of demonstrating empathy and encouragement for others.
“I don’t mind talking to them or motivating them in life and telling them about things that I went through.” (P14, mother)
Theme 7: Holistic Healthcare Approach
The relationship between participants and their healthcare providers, and participants’ perception of their healthcare provider’s compassion and care towards their child affected their personal well-being.
Psychosocial support (N = 19). Participants were appreciative of the psychological and emotional care that they received from their social workers and counsellors at the time of caring for their chronically ill child.
“I really appreciate [them]. They counselled the girl (sick daughter). They counselled me […] be there for me to talk whatever I want to talk.” (P15, mother)
They felt they could openly share their fears and anxieties, which was described as vital to mental well-being.
“Sometimes they (parents) also need like vitamins. Vitamins is not like vitamin A, B vitamin. It’s like support […] counseling, motivating.” (P20, mother)
Psychosocial support aided participants to transition from the role of a caregiver to that of a bereaved parent.
“They come and visit and see what they can help (during child’s wake) … They also asked me that I can let them know if I needed any help.” (P24, mother)
Compassionate medicine (N = 17). Participants perceived that there was a need for physicians to show greater compassion for their patients and respect the family’s wishes for quality of life for their child.
“They saw the children as patients. They never treated them as children. Whenever they needed to poke the children to find veins and these types of things, they were rough.” (P7, mother)
“The doctor wanted to save his life, not his leg. But to us parents, I rather let him have a leg. Since it [cancer] cannot be cured I rather let him enjoy the rest of the life.” (P2, mother)
Others noted that a compassionate physician would have the capacity to show greater respect to the child and view the suffering from the child’s perspective.
“This doctor, very fresh in the morning, ‘How is your pain, [on a scale of] 1 to 10?’ My son said, ’100’. ‘Couldn’t be a 100.’ When he said the pain is 100, you can say it’s very painful, right? How could you say it couldn’t be like that? Did you feel his pain? Have you ever had cancer and relapse before?” (P8, mother)
Care continuity (N = 14). Participants favored an integrated approach to their child’s care that comprised disease-directed treatments together with emotional support and comfort provision.
“When I say some with passion, while checking on her, then they played with her, that kind of thing, to make her feel more comfortable.” (P19, mother)
However, only a small proportion of parents perceived themselves to be recipients of such holistic care, as can be seen from the number of parents who emphasized the need for greater compassion in medical care. Additionally, participants also expressed that a quality healthcare service would involve clear, adequate and consistent communications from the physician regarding their child’s treatment and prognosis.
“Some people tend to explain it in a very technical jargon form […] what do you mean by MRD, minimal residual disease? What do you mean by blood peripheral blast? This kind of terms sounds very intimidating at times.” (P25, father)