[HTML][HTML] The supportive care needs of parents caring for a child with a rare disease: a scoping review
LJ Pelentsov, TA Laws, AJ Esterman - Disability and Health Journal, 2015 - Elsevier
Background Parents caring for a child with a rare disease report unmet needs, the origins of
which are varied and complex. Few studies have systematically attempted to identify the …
which are varied and complex. Few studies have systematically attempted to identify the …
Family‐centred care for hospitalised children aged 0‐12 years
L Shields, H Zhou, J Pratt, M Taylor… - Cochrane database …, 2012 - cochranelibrary.com
Background This is an update of the Cochrane systematic review of family‐centred care
published in 2007 (Shields 2007). Family‐centred care (FCC) is a widely used model in …
published in 2007 (Shields 2007). Family‐centred care (FCC) is a widely used model in …
Involving parents in managing their child's long-term condition—a concept synthesis of family-centered care and partnership-in-care
Background Fostering effective engagement, collaboration and empowerment are central to
supporting parents caring for children with long-term conditions. Methods A concept …
supporting parents caring for children with long-term conditions. Methods A concept …
Preventing home medication administration errors
Medication administration errors that take place in the home are common, especially when
liquid preparations are used and complex medication schedules with multiple medications …
liquid preparations are used and complex medication schedules with multiple medications …
Consumer health information needs: A systematic review of measures
Abstract Information needs motivate human information behavior. Knowledge of information
needs is critical for user-centered information behavior research and system design. In …
needs is critical for user-centered information behavior research and system design. In …
Information‐sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange
This study examined participants' views on children's participation in information‐sharing
and communication interactions. A descriptive qualitative approach was taken with …
and communication interactions. A descriptive qualitative approach was taken with …
Parenting interventions for childhood chronic illness: A review and recommendations for intervention design and delivery
Every day, thousands of children suffer the effects of chronic health conditions and families
struggle with illness management and children's behavioural and emotional adjustment …
struggle with illness management and children's behavioural and emotional adjustment …
The supportive care needs of parents with a child with a rare disease: a qualitative descriptive study
LJ Pelentsov, AL Fielder, AJ Esterman - Journal of pediatric nursing, 2016 - Elsevier
Highlights•Focus groups used to investigate needs of parents of a child with a rare
disease.•Parents felt socially isolated caring for their child with a rare disease.•Often parents …
disease.•Parents felt socially isolated caring for their child with a rare disease.•Often parents …
Information seeking by parents of children with physical disabilities: An exploratory qualitative study
MW Alsem, F Ausems, M Verhoef, MJ Jongmans… - Research in …, 2017 - Elsevier
Background Evidence suggests that parents of children with disabilities feel that not all their
information needs are being met, but it remains unclear how parents try to fill these …
information needs are being met, but it remains unclear how parents try to fill these …
“Forewarned and forearmed”: Long-term childhood cancer survivors' and parents' information needs and implications for survivorship models of care
Objective This mixed-method study assessed 1) survivors' and parents' information needs;
and 2) associations between unmet information needs and clinical and socio-demographic …
and 2) associations between unmet information needs and clinical and socio-demographic …