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. 2023 Jun 26;76(3):e20220476.
doi: 10.1590/0034-7167-2022-0476. eCollection 2023.

Searching for human connection to transcend symbolisms in pediatric palliative care

[Article in English, Portuguese]
Patrícia Luciana Moreira-Dias  1 , Larissa Fernandes Franco  1 , Maria Aparecida Bonelli  1 , Esther Angélica Luiz Ferreira  1 , Monika Wernet  1
Affiliations

Searching for human connection to transcend symbolisms in pediatric palliative care

[Article in English, Portuguese]
Patrícia Luciana Moreira-Dias et al. Rev Bras Enferm. .

Abstract
in English, Portuguese, Spanish

Objectives: to present a theoretical model for the interactional context of health professionals and families of children and adolescents under palliative care.

Methods: qualitative study based on the theoretical frameworks of Grounded Theory and Symbolic Interactionism. Ten palliative care professionals took part in this study through semi-structured interviews employing snowball technique from 2020 to 2021.

Results: the comparative data analysis resulted in the theoretical model "Searching for human connection to transcend symbolisms in pediatric palliative care". It reveals symbolic elements that substantiate the construction of a collaborative context integrating two phenomena: "Overcoming boundaries and intertwining paths" and "Embracing suffering to weave meaningful experiences". Symbolisms in palliative care guide the behavior of families and professionals, which makes them the key factor to be managed.

Final considerations: symbolisms and suffering continually integrate the interactional experience of professionals. Empathy and compassion are fundamental elements to enable their connection with families.

Objetivos:: apresentar um modelo teórico sobre o contexto interacional entre profissionais de saúde e famílias de crianças e adolescentes em cuidados paliativos.

Métodos:: estudo qualitativo sob os referenciais da Teoria Fundamentada nos Dados e Interacionismo Simbólico. Participaram dez profissionais atuantes em cuidado paliativo, por meio de entrevista semiestruturada, a partir da técnica “bola de neve”, entre os anos 2020 e 2021.

Resultados:: a análise comparativa dos dados resultou no modelo teórico ‘Buscando por conexão humana para transcender simbolismos do cuidado paliativo pediátrico’. Evidencia elementos simbólicos que sustentam a construção do contexto colaborativo integrando dois fenômenos: ‘Rompendo fronteiras e entrelaçando caminhos’ e ‘Acolhendo o sofrimento para tecer experiências de vida significativas’. Simbolismos dos cuidados paliativos orientam comportamentos das famílias e profissionais, constituindo-se no principal interveniente a ser manejado.

Considerações Finais:: simbolismos e sofrimento integram continuamente a experiência interacional do profissional. Empatia e compaixão são elementos fundamentais para sua conexão com as famílias.

Objetivos:: presentar un modelo teórico sobre el contexto interaccional entre los profesionales de la salud y las familias de niños y adolescentes en cuidados paliativos.

Métodos:: estudio cualitativo bajo la Teoría Fundamentada en los Datos y el Interaccionismo Simbólico. Participaron diez profesionales activos en cuidados paliativos, a través de entrevistas semiestructuradas, con base en la técnica de “bola de nieve”, entre los años 2020 y 2021.

Resultados:: el análisis comparativo de los datos resultó en el modelo teórico ‘Buscando la conexión humana para trascender simbolismos de los cuidados paliativos pediátricos’. Evidencia los elementos simbólicos que apoyan la construcción del contexto colaborativo integrando dos fenómenos: ‘Rompiendo fronteras y entrelazando caminos’ y ‘Acogiendo el sufrimiento para tejer experiencias de vida significativas’. Los simbolismos de los cuidados paliativos guían los comportamientos de las familias y los profesionales, constituyendo el principal factor a ser manejado.

Consideraciones Finales:: el simbolismo y el sufrimiento son continuamente parte de la experiencia de interacción del profesional. La empatía y la compasión son elementos fundamentales para su conexión con las familias.

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Figures

Figure 1
Figure 1. Theoretical model ‘Searching for human connection to transcend symbolisms in pediatric palliative care’ with its phenomena and categories, São Carlos, São Paulo, Brazil, 2021
Figure 2
Figure 2. Phenomenon ‘Overcoming boundaries and intertwining paths’, São Carlos, São Paulo, Brazil, 2021
Figure 3
Figure 3. Phenomenon ‘Embracing suffering to weave meaningful experiences’, São Carlos, São Paulo, Brazil, 2021
See this image and copyright information in PMC

References

    1. Radbruch K, De Lima L, Knaul F, Woodruff R, Yong J, Pastrana T, et al. Redefining pallliative care: a new consensus-based definition. J Pain Symptom Manage. 2020;60(4):754–764. doi: 10.1016/j.jpainsymman.2020.04.027. - DOI - PMC - PubMed
    1. Connor SR, Downing J, Marston J. Estimating the global need for palliative care for children: a cross-sectional analysis. J Pain Symptom Manage. 2017;53(2):171–177. doi: 10.1016/j.jpainsymman.2016.08.020. - DOI - PubMed
    1. Verberne LM, Kars MC, Meeteren AYNS, Bosman DK, Colenbrander DA, Grootenhuis MA, et al. Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study. Eur J Pediatr. 2017;3(176):343–354. doi: 10.1007/s00431-016-2842-3. - DOI - PMC - PubMed
    1. Verberne LM, Schouten-van Meeteren AY, Bosman DK, Colenbrander DA, Jagt CT, Grootenhuis MA, et al. Parental experiences with a paediatric palliative care team: a qualitative study. Palliat Med. 2017;31(10):956–963. doi: 10.1177/0269216317692682. - DOI - PubMed
    1. Smith W. Concept analysis of family-centered care of hospitalized pediatric patients. J Pediatr Nurs. 2018;42:57–64. doi: 10.1016/j.pedn.2018.06.014. - DOI - PubMed