RNQualitativeJournal of child health care : for professionals working with children in the hospital and community2024

Children's complex health: Maternal experiences of care and decision making.

Eleanor Willis, Rosemary Godbold

PMID 36857439

WHAT IT FOUND

Seven mothers of children with complex health needs described fragmented care, constant advocacy, and fear disability could limit treatment.

They valued continuity, clear communication, family-centred planning, and written advance care plans that reassured them about access to care.

Key findings

01The seven interviewed mothers were caring for children under multiple specialist teams and doing daily tasks including enteral feeding, central line access, medication, seizure management, suctioning, tracheostomy care, and home ventilation.

02Mothers valued a long-term trusted relationship with a professional who provided continuity and recognised the family as individuals.

03Mothers gave examples of professionals assuming disability meant treatment was not worth pursuing, and written plans were reported to reassure them about emergency care access.

STILL TO COME

How it was doneWhat they foundWhat it means for RNs

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What it does not show

Only seven mothers were interviewed, and fathers were not represented, so the findings describe a narrow group of parent experiences. Participants were recruited from one community service in Eastern England and non-English speakers were excluded, limiting transferability. Children with unstable or deteriorating health, safeguarding involvement, or a researcher as named nurse were excluded, so the most acute family moments may be under-represented. Telephone interviews prevented use of non-verbal cues, and participants did not review transcripts to confirm interpretation. The analysis was led by a novice researcher, although the second author provided independent analysis and supervision. The study may have appealed to mothers already confident about being proactive. The paper did not include children's or young people's own perspectives.

Declared interests

The authors declared no conflicts of interest and received no financial support.

The easy way to misread this

Do not treat these themes as evidence that named professional continuity or written advance care plans improve clinical outcomes. The study interviewed seven mothers at one service and reports experiences, not measured effects.

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