From hospitalization to grief: meanings parents assign to their relationships with pediatric oncology professional

Santos, Maiara Rodrigues dos; Wiegand, Debra Lynn-McHale; Sá, Natália Nigro de; Misko, Maira Deguer; Szylit, Regina

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Revista da Escola de Enfermagem da USP

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Sumário

ORIGINAL ARTICLE • Rev. esc. enferm. USP 53 • 2019 • https://doi.org/10.1590/S1980-220X2018049603521 copy

From hospitalization to grief: meanings parents assign to their relationships with pediatric oncology professional ^* * Extracted from the thesis: “Relacionamentos entre pais e profissionais da saúde no final de vida da criança com câncer hospitalizada: encontros que sobrevivem ao tempo”, Escola de Enfermagem, Universidade de São Paulo; 2016.

Authorship SCIMAGO INSTITUTIONS RANKINGS

ABSTRACT

Objective

To understand the meanings assigned by bereaved parents to their relationships with healthcare professionals during the end-of-life hospitalization of their child.

Method

Qualitative-interpretative study based on hermeneutics. Data were collected from interviews with parents who were grieving the death of a child with cancer in the hospital and participant observation in an oncology ward. Deductive thematic analysis for data interpretation ensued.

Results

The experience of parents is the sum of all relationships during treatment. Therefore, meanings form a tangle of interrelated senses built not only in the interaction with these professionals, but also with the child and with grief itself. In relationships with professionals, meanings related to the memories of the child, negative emotions and regret were identified.

Conclusion

The experiences and meanings of grief are shaped by the social processes and interactions experienced by the family in the hospital. The relationship with the professionals represents part of the support in coping with the grief after the child’s death in the hospital, due to the perpetuity of the love shown for the child as a possible legacy in the legitimacy of the experienced interactions.

Child, Hospitalized; Neoplasms; Professional-Family Relations; Family Nursing; Death; Bereavement

Categories of meanings
Parents and professionals (through relationships with professionals)	1. Memories of the child 1.1. Perpetuating the child’s memory 1.2. Evoking positive feelings 1.3. Leaving a legacy
	2. Negative emotion
	3. Regret
Parents and child (in the relationship with the child)	4. Impermanence
	5. Valuing the time shared with the child
	6. Affirmation of the child’s identity
	7. Preparation of the child to the death
	8. Acceptance
	9. Release from suffering
Parents and bereavement (loss) (in the relationship with the loss/ bereavement)	10. Valuing relationships
	11. Coping
	12. Moving on
	13. Improving prospects
	14. Spirituality
	15. Missing their child
	16. Lack of understanding
	17. Lost identity
	18. Meaning found (not specific)
	19. No meaning

Universidade de São Paulo, Escola de Enfermagem Av. Dr. Enéas de Carvalho Aguiar, 419 , 05403-000 São Paulo - SP/ Brasil, Tel./Fax: (55 11) 3061-7553, - São Paulo - SP - Brazil
E-mail: reeusp@usp.br

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[1] Corresponding author: Maiara Rodrigues dos Santos. Av. Dr. Enéas Carvalho de Aguiar, 419, Cerqueira César. CEP 05403-000 – São Paulo, SP, Brazil. maiara.santos@usp.br

10. Valuing relationships	To have the support of family, friends, faith, to believe in something, whatever it is. (...) Let’s share it with the others (M2) . I had support from school, church, friends, everyone helped me and to this day some give me the support I need (M4) .
11. Coping	After a long time we start to become more serene. (...) Nothing is replaced, nothing changes, but we become more serene (M2) . I am different from my mother. She thinks too much and suffers more. I do not know if I suffer less than her or if I suffer less than I can (M5) .
12. Moving on	I do not think much. That’s why I’m like this, moving on. If you keep thinking about every detail, you’ll lose your mind (M2) .
13. Improving prospects	I would like people to see that there is another way to live. Even in a critical situation like death (M2) .
14. Missing their child	I think it’s an eternal grief (M6) . An eternal missing him. Some days I’m better, some days I’m... But every year I grow more serene (M2) .
15. Lost identity	People ask me how many children I have. And I don’t know what to say! If I say one, he (brother) gets mad at me. He doesn’t accept it. My husband does not accept it either. So it’s complicated, you know? (M1).
16. Spirituality	My husband is still revolted. He will not talk about God because of the girl (M1) . ‘Lord (weeping voice), I never asked You to heal him, I always asked You to keep him from suffering... I’d rather You take him than to see him suffer’ (M4) .
17. Lack of understanding	I don’t know how this illness came in, I do not know how it got here, all I know is that it took K. (daughter’s name) away. My God, how can such a girl leave us? I thought she would never go (M1) .
18. Meaning found (not specific)	You will never get some answers! Depending on your religion, the day you meet your God, you may ask them (...) But here you will never get an answer. Will this bring my child back? No! Then that’s it! One day I may ask God, when I’m gone (M2) .
19. No meaning	I ask: ‘God, why my daughter?’ Because my family is huge, my sisters have many children, right? Is there a reason why? No. There is no reason (M1) .