“Times of war and time of uncertain peace”: Narratives of parents of childhood cancer survivors

Neris, Rhyquelle Rhibna; Leite, Ana Carolina Andrade Biaggi; Papathanassoglou, Elizabeth; Garcia-Vivar, Cristina; Souza, Juliana de; Nascimento, Lucila Castanheira

doi:10.1590/1518-8345.7005.4263

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Revista Latino-Americana de Enfermagem

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Original Article • Rev. Latino-Am. Enfermagem 32 • 2024 • https://doi.org/10.1590/1518-8345.7005.4263 copy

“Times of war and time of uncertain peace”: Narratives of parents of childhood cancer survivors^* * This study was financed in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES) - Finance Code 001, Brazil, and supported by Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq), Grant #200580/2022-1, Brazil.

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

Objective:

to analyze the meaning attributed by parents to the extended and permanent survival of childhood cancer.

Method:

qualitative narrative inquiry, developed with parents of adolescents and young adults who survived childhood cancer. Recruitment and data collection involved virtual and in-person approaches. The data were collected through semi-structured interviews. Data were analyzed according to reflective thematic analysis.

Results:

a total of ten parents were included in the study. Two thematic narrative syntheses were constructed: “Times of war”; and “Time of uncertain peace”, with their respective sub-themes. The cancer diagnosis marks the beginning of times of war in the parents’ lives. They experience cancer treatment as “highs and lows” with potential threats to their children’s lives. After that, “Time of uncertain peace” are reached, and the balance of the family unit is reestablished. However, the fear of recurrence makes the family peace uncertain, and its maintenance requires constant vigilance and attention to the signs and symptoms of a possible new battle.

Conclusion:

the results highlight the experience of being a parent of a childhood cancer survivor and can be applied to develop models of care centered on the survivors’ family.

Descriptors:
Survivors; Neoplasms; Child; Adolescent; Parents; Qualitative Research

Highlights:

(1) Parents’ experiences in childhood cancer survival are neglected in the literature.

(2) The acute treatment for childhood cancer is experienced as a time of war.

(3) Long-term survival is experienced as a time of peace by the parents.

(4) Fear of recurrence makes parental peace uncertain even in long-term survival.

(5) Parents should be included in survivor care.

Parents’ characteristics	n
Relationship with the adolescent or young adult
Mother	9
Father	1
Age (years)
31 - 40	3
41 - 50	6
51 - 60	1
Gender
Female	9
Male	1
Marital status
Single	1
Married	7
Common law	2
Education
Elementary school	4
High school	3
Bachelor’s degree	2
Survivors’ characteristics	n
Age (years)
11 - 15	3
16 - 20	5
21 - 25	1
26 - 30	1
Gender
Female	4
Male	6
Survivors’ diagnosis
Leukemias	3
Central Nervous System Tumors	3
Soft tissue sarcoma	1
Osteosarcoma	1
Wilms tumor	1
Lymphoma	1
Time since the diagnosis
2 years	2
3 years	1
4 years	4
5 years or more	3
Treatments
Chemotherapy (Chemo)	4
Surgery	1
Chemo + Radiotherapy	1
Chemo + Surgery	2
Chemo + Radiotherapy + Surgery	1
Radiotherapy + Surgery	1

Escola de Enfermagem de Ribeirão Preto / Universidade de São Paulo Av. Bandeirantes, 3900, 14040-902 Ribeirão Preto SP Brazil, Tel.: +55 (16) 3315-3451 / 3315-4407 - Ribeirão Preto - SP - Brazil
E-mail: rlae@eerp.usp.br

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[1] Corresponding author: Lucila Castanheira Nascimento E-mail: lucila@eerp.usp.br https://orcid.org/0000-0002-7900-7111

Stage I	The interviews were transcribed in full. Then, to familiarize themselves with the interviews, two researchers actively read through all the interviews looking for patterns and meanings, and the main ideas for coding were noted.
Stage II	The line-by-line coding of the interviews, using the MAXQDA2020^®(³⁰30. Kuckartz U, Rädiker S. Analyzing Qualitative Data with MAXQDA [Internet]. Cham: Springer International Publishing; 2019 [cited 2023 Aug 15]. Available from: Available from: http://doi.org/10.1007/978-3-030-15671-8 http://doi.org/10.1007/978-3-030-15671-8... software, was carried out independently by two authors (first and second authors). In this step, a total of 180 in vivo codes were generated. The generated codes identified latent aspects of the data, which identified the characteristics that gave shape and specific meanings to the data. After the initial independent coding, there was discussion among all authors and cross referencing of all codes raised. In this stage, the coding was based on grouping the data collected for subsequent identification of the plot of the narratives.
Stage III	After all the data was already coded, considering the relationship and differences between codes identified in the previous step, two narrative syntheses were constructed inductively. A narrative synthesis has the main characteristic of integrating the experience of all participants, considering their convergences and divergences. Additionally, this maintains the essence of the narrations of the participants to exemplify these experiences. This step was conducted by the first and last author of the study.
Stage IV	In the next phase, based on the narratives, the first and last author inductively identified and named the two interpretive themes.
Stage V	Finally, in the last phase of the reflective thematic analysis, the previously constructed themes were refined, and the themes of the final narratives for the study were defined, as well as the subthemes that structure them. This stage was completed through research team discussion and careful review of the results report. The fifth stage of the analysis ensured the coherence of the data present in the themes.

“Times of war”	Sub-themes	Narratives from participants
	“A boy whose life stopped at the age of 9”	At about 5 years old he started with headaches and vomiting. That went on for several months, he was vomiting and had a headache, I took him to the hospital, they did tests and found nothing. Over time, other symptoms appeared, he found it very difficult to see and speak, his voice was completely choked up, very muffled, sometimes we couldn’t even understand what he was saying (Mother, p2).
		On one occasion, he had a very bad seizure, we took him to the hospital, the doctors and health professionals said he was on drugs. I said: No, my son doesn’t use drugs. He is a boy whose life stopped at the age of nine. He doesn’t do drugs. That was the worst day of my life (Mother, p7).
	Confirmation of cancer diagnosis: impact on the family	I had no hope for anything else. Honestly, at the time I thought: “I think I’m going to get in my car, go on the road and kill myself with my son”. I think I’m going to kill myself, not just me, but my son. I won’t take it (Mother, p1).
		When my daughter was diagnosed, she had severe anemia due to leukemia. She was very much at risk, a 90% chance of death risk, 10% chance of survival (Father, p4).
	“Highs and lows” during cancer treatment	In order to be able to undergo the treatment, she and I moved to another city and practically lived in the hospital. I didn’t see my daughter, I didn’t see my husband. There was no one who could change place with me to stay with her in the hospital for a while, so I could leave the hospital. There wasn’t anyone. It was a very, very challenging period for me, because I thought I wasn’t going to make it. It wasn’t easy. Not at all. The treatment was very difficult. I thought I was going to go crazy (Mother, p3).
		We went through difficult times. She menstruated during treatment and hemorrhaged. Her flow was big, I was desperate. She had a lung water crisis due to the ATRA (trans-retinoic acid) and the saturation dropped to 80%. This time, she was transferred to the ICU (Intensive Care Unit). It was a very difficult time, but she overcame it. There was a time when she caught a cytomegalovirus and was hospitalized for 40 days. There were 25 days without knowing what it was. I thought she was going to die, without finding out, we thought it was the return of the leukemia. There were many highs and lows in the treatment (Father, p4).
“Time of uncertain peace”	“My son is a survivor, he is a warrior”	There is a time of war and there is a time of peace! Now the time has come for everyone to raise the white flag of peace. Nowadays we just remember what happened and ask God not to have to go through it again, under no circumstances, may God help us so that this does not happen. Now we are a well-structured and balanced family. Today it all has passed. That’s why I say that today is peace time, war time is over. Today, we are winners, for everything that happened; today, we are winners (Mother, p7).
		He is a cancer survivor. He survived by not going into a coma, he survived the first surgery, the second surgery, and also the chemo. He survived all of that. He survived three times. He is a survivor, a good survivor! (Mother, p2)
	“It’s a rebirth”	Today I can see that she is a winner. I say it like this: “you came out of death to be reborn again, it’s a rebirth, a resurgence”. That’s what survival is about, surviving during the critical phase and surviving and being a better person afterwards (Father, p4).
		The hospital was an extraordinary thing in my son’s life and brought my son back. He is happy today, he has overcome everything (Mother, p7).
		My daughter was born again. God healed her and she didn’t die. She revived again (Mother, p9).
	Alliances to achieve peacetime	To be a survivor, you need your family to not give up on treatment. If he hadn’t had the support from me, his father, and other family members and friends, he would have given up (Mother, p3).
		My whole family survived cancer. The whole family is a survivor, the family is tied together with the family bonds. When one member goes through something, the family goes through it all together. For all that we’ve been through, surely, we are all cancer survivors (Mother, p7).
	“The mother of a survivor never feels relieved”	It’s very scary. Very scary. Every time we go for follow-up, we feel that fear. It is terrifying to arrive at the hospital and say something. As much as we have faith in God and we believe it won’t come back, it’s something that haunts me a lot. I don’t know about him, I also rather not put anything in his head so I don’t have to worry about it, with something that is not even happening. Leave it with me, I’m a mother (Mother, p3).
		Even though she is fine, there is still that insecurity running around. I still don’t feel safe. This affects my quality of life a little; you stop sleeping and keep thinking. Sometimes I am quiet and thoughtful; suddenly the memories come back and it scares me (Mother, p5).