Journal of clinical nursing · 2025
Carrying the Unspoken: A Phenomenological Study of the Existential Experiences of Siblings of Children With Complex Care Needs.
СтатьяПоддержка исследования: вне правительства СШАНазвание и аннотация: Перевод в очереди
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Nygård Carina, Clancy Anne, Kitzmüller Gabriele
Аннотация
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.
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.