# Understanding Maternal Role in Caring for Children with Severe Cognitive Impairment in Paediatric Palliative Care: A Qualitative Pilot Study

## TL;DR

This study explores how mothers care for children with severe cognitive impairment in palliative care, highlighting emotional and relational challenges and the need for supportive, personalized care.

## Contribution

The study introduces a qualitative understanding of maternal identity and caregiving in the context of severe cognitive impairment in pediatric palliative care.

## Key findings

- Mothers develop fusion-like relationships with their children, relying on non-verbal communication and interpretive caregiving.
- Emotional labor and meaning-making processes help mothers adapt to the challenges of caregiving.
- Personalized, meaning-oriented interventions are needed to support mothers and improve clinical communication.

## Abstract

What are the main findings?
The mother–child relationship in PPC is characterised by embodied attunement, fusion-like relational dynamics, and reliance on minimal non-verbal reciprocity.Mothers redefine their role through emotional labour, specialised interpretive caregiving, and meaning-making processes that support adaptation in the context of severe cognitive impairment.

The mother–child relationship in PPC is characterised by embodied attunement, fusion-like relational dynamics, and reliance on minimal non-verbal reciprocity.

Mothers redefine their role through emotional labour, specialised interpretive caregiving, and meaning-making processes that support adaptation in the context of severe cognitive impairment.

What are the implications of the main findings?
Recognising these relational and identity-related dynamics can help clinicians interpret non-verbal cues more accurately and engage mothers in more attuned, supportive communication.The findings highlight the need for personalised, meaning-oriented interventions and offer guidance for interdisciplinary teams working with families in PPC settings.

Recognising these relational and identity-related dynamics can help clinicians interpret non-verbal cues more accurately and engage mothers in more attuned, supportive communication.

The findings highlight the need for personalised, meaning-oriented interventions and offer guidance for interdisciplinary teams working with families in PPC settings.

Background/Objectives: Within Paediatric Palliative Care (PPC), motherhood in the context of severe cognitive impairment is shaped by unique emotional, relational, and identity-related challenges. Traditional understandings of maternal identity are strained when verbal communication and typical developmental milestones are absent. Although caregiving in PPC has been widely studied, the subjective and symbolic dimensions of motherhood in this setting have received far less attention. This study sought to explore how mothers construct, interpret, and make sense of their maternal identity while caring for a child with severe cognitive impairment in a PPC context, and to underscore the clinical relevance of these identity-related processes. Methods: A qualitative study was conducted involving nine mothers of children receiving paediatric palliative care services at a regional centre in Italy. Participants engaged in three online focus groups, totalling 270 min. Reflexive thematic analysis was employed to interpret the transcribed data, using ATLAS.ti software, version 25.0.1 ATLAS.ti Scientific Software Development GmbH, Berlin, Germany, for support. Member reflections were incorporated to validate the findings. Results: Three interconnected themes emerged from the reflexive thematic analysis. First, mothers described the development of a fusion-like, enmeshed mother–child relationship, characterised by embodied attunement, specialised interpretive expertise, and lifelong care dependency. Second, mothers detailed the construction of their maternal role, shaped by emotional labour, identity negotiation, sacrifice, loneliness, and peer support, alongside the construction of the child’s role, in which children were perceived as unique, symbolically meaningful beings whose social presence and limited reciprocity shaped maternal identity. Third, mothers articulated a search for meaning that sustained them throughout the caregiving journey, reframing their experience within a broader existential and relational perspective. Conclusions: Maternal caregiving in PPC encompasses distinct emotional, relational, and symbolic dimensions that extend beyond conventional understandings of motherhood. Grasping these identity-related dynamics has direct clinical relevance: it enables more attuned communication, strengthens the therapeutic alliance, and supports personalised, meaning-oriented care. These insights highlight the need for tailored interventions and further qualitative research to inform health care professionals and interdisciplinary practice.