Centrality of agency in the provision of compassionate care in a Chilean paediatric hospital a qualitative realist approach

Abstract

BACKGROUND: Compassionate care, integral to person-centred care (PCC), lacks clear alignment with PCC in the literature. Challenges in conceptualisation and implementation persist, exacerbated by cultural variations. Despite consensus on compassion's three pillars—Awareness, Empathy, and Action—integration of child-parent(s) dyads and nurses' perspectives and clinical interventions remain limited. Notably, only a minor fraction of the studies involving paediatric care emphasise compassionate care from the perspective of children, reflecting a significant gap. Existing studies highlight factors like time constraints and organisational culture affecting compassionate care, yet the fundamental causal mechanisms behind its provision remain insufficiently explored. Amid adult-focused research dominance, empirical exploration, particularly in Chile, concerning child-parent dyads and nurses' experiences in compassionate care is scarce.

AIM: This case study with a realist approach aimed to advance understanding and gain new knowledge into compassionate care provision, considering the perspective of child-parent(s) dyads and nurses in a paediatric setting in Chile.

DESIGN: Using a critical realist lens, I employed a case study methodology guided analytically by a combination of reflexive thematic analysis and a realist approach. The study adopts a qualitative online multi-method that combines different data collection techniques. I started interviewing child dyads outpatients using a storytelling strategy (n=12 children between 8-12 years old with chronic diseases) from December 2020 to March 2021 in a paediatric public hospital in Chile. Then I interviewed their parents (n=16 parents- 12 mothers and four fathers) from December 2020 to April 2021. I followed ten nurses referred by these child-parent(s) dyads as compassionate care providers using audio diaries (cognitive logbook) from May to August 2021, collecting 36 entries. A child-parent(s) dyads were considered analytically as a unit. I concluded in a stage of interviews (n= nine nurses, one withdrawal) to deepen and refine the analysis. The entire material was transcribed and managed with data analysis software (NVivo).

FINDINGS: The findings and discussion illuminate how these Chilean child-parent(s) dyads and nurses perceive compassionate care. According to them, compassionate care is a polysemic concept equivalent to international evidence based on awareness of suffering, empathy, and actions to alleviate or prevent this suffering.

The centrality of agency is seen as a core dimension from both perspectives of who receives compassion (child-parent(s) dyads) and who provides compassionate care (nurses). From the dyads' views, 'Empower me as a path to alleviate suffering' comprises two main subthemes: Emerging agency and Coproduction. The first subtheme condenses key mechanisms whereby children unfold their agency and seek opportunities to decide. The second one describes how parents exercise agency by pursuing to be included and recognised as allies in the care of their children. The themes identified provide new insights into how children with chronic illnesses and their families need tailored, compassionate actions. This emphasises the importance of listening to children's and parents' voices and the need to include this population in future studies.

From nurses' perspectives, the centrality of agency comprises two main themes: Agential Powers and Workplace Sabotaging Forces upon nurses' agency. Nurses' agential powers epitomise internal dispositions that might help nurses make decisions and resist external constraints that may jeopardise providing compassionate care. Conversely, the second one encapsulates workplace forces undermining nurses' agency to provide this care. Furthermore, this study helps to understand the underlying mechanisms of displaying nurses' agency and compassion under workplace incivility.

IMPLICATIONS: The study offers insights into how compassionate care is represented in a Chilean context. Nevertheless, the findings have global implications that go beyond the Chilean context. The theme of agency emerges as pivotal for receiving and providing compassionate care. Tailored interventions empowering children and families are crucial, alongside prioritising nurses' agency through strategies that mitigate workplace challenges. Nursing educational programmes should integrate these findings to enhance professionals' competence. Policymakers should consider the insights to foster family-centred care, acknowledging parents' partnership and creating environments that support compassionate care amidst challenges. The study emphasises the importance of incorporating compassion and agency across practice, education, and policy realms.