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Carrying the Unspoken: A Phenomenological Study of the Existential Experiences of Siblings of Children With Complex Care Needs

ABSTRACT

Aim

To explore the existential lived experiences of emerging adult siblings of children with complex care needs.

Design

A qualitative phenomenological design.

Methods

In-depth conversational interviews were conducted between February and June 2022 with nine emerging adult siblings (aged 16–27), who grew up with a brother or sister with complex care needs. Data were analysed using van Manen's phenomenology of practice approach.

Results

Five core themes were identified: Loss of a familiar world: the profound changes and disruptions in siblings' lives. The sibling bond: endured and enduring love. Embracing the load: balancing responsibilities. Being behind the scenes: a lonely childhood. Jigsaw falling into place: siblings finding clarity and forging their own paths.

Conclusion

Early experiences of growing up with a sibling who has complex care needs, may resurface or shift in meaning, impacting long-term existential well-being, particularly when siblings feel overlooked by families, educators, and healthcare professionals. These silenced experiences often persist into emerging adulthood, shaping emotional health, relationships, and life choices.

Impact

The underrecognized existential needs of these siblings call for intentional, person-centred care. Our research advocates early, targeted interventions, emphasizing the pivotal role of nurses. A lifeworld-led phenomenological approach equips nurses to more effectively attend to the unmet needs of siblings within family care settings.

Reporting Method

The research followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.

Patient and Public Contribution

Emerging adult siblings with lived experience of growing up alongside a brother or sister with complex care needs contributed important insights into the interpretation of findings, ensuring relevance to clinical nursing.

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