Peer-reviewed article
Understanding Maternal Role in Caring for Children with Severe Cognitive Impairment in Paediatric Palliative Care: A Qualitative Pilot Study.
Santini A, Marinetto A, Papadatou D, Benini F ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study explored how nine mothers construct their maternal identity while caring for children with severe cognitive impairment in paediatric palliative care settings in Italy. Mothers described developing deeply enmeshed relationships with their children, characterized by embodied attunement and specialized interpretive expertise. The study reveals that maternal caregiving involves distinct emotional, relational, and symbolic dimensions beyond conventional motherhood, including identity negotiation, emotional labour, and a search for existential meaning. The findings highlight the need for clinicians to understand these identity processes to provide more attuned, personalized care.
Key points
- Mothers developed fusion-like, enmeshed relationships with their children, characterized by embodied attunement and specialised interpretive expertise
- Maternal role construction was shaped by emotional labour, identity negotiation, sacrifice, loneliness, and peer support
- Children were perceived as unique, symbolically meaningful beings whose limited reciprocity shaped maternal identity
- Mothers articulated a search for meaning that sustained them throughout the caregiving journey, reframing experience within existential and relational perspectives
- Understanding these identity-related dynamics has clinical relevance for attuned communication, therapeutic alliance, and personalised, meaning-oriented care
Limitations
This is a small qualitative pilot study with nine mothers from one regional centre in Italy, so findings cannot be generalized beyond this context. The study explores subjective experience and meaning-making rather than measurable health or development outcomes for children.
Abstract
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.