Involving Parents in Managing Their Child's Long-Term Condition—A Concept Synthesis of Family-Centered Care and Partnership-in-Care

Smith, Joanna; Swallow, Veronica; Coyne, Imelda

doi:10.1016/j.pedn.2014.10.014

Cited by 146 publications

(138 citation statements)

References 72 publications

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“…Unless health professionals find out what else is happening in the life of a family, they cannot expect that a parent, who, for example, may have other sick children at home and no grandparents around to give support, should stay with their admitted child. True family-centred care means in-depth exploration of family situations and negotiation to determine the "best fit" for care of the admitted child [24].…”

Section: Misunderstanding Of Fccmentioning

confidence: 99%

What Is “Family-Centred Care”?

Shields¹

2015

EJPCH

109

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Family-centred care is a ubiquitous term in paediatric health facilities. It means that an admitted child can never be treated as a single individual patient, that the family is the unit of care, as the parents and family are central to the child’s wellbeing, especially during traumatic experiences. There is no rigorous evidence that family-centred care works, but qualitative research is drawing out some grave concerns with how it is implemented. Part of the problem is that there are many descriptions of family-centred care, but few definitions, and some of its component parts may be in place in some health services without the whole model being in place. This causes confusion amongst health professionals and parents and children, and makes it impossible to test in a randomised controlled trial. This paper discusses these problems and suggests that a new model, child-centred care, may be a better model of care for children.

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Section: Misunderstanding Of Fccmentioning

confidence: 99%

What Is “Family-Centred Care”?

Shields¹

2015

EJPCH

109

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“…These principles aim to improve quality and safety of paediatric health care through enhanced patient/family experience and communication and translation into improved health outcomes for children. Evidence for better health outcomes through FCC is relatively limited (Shields et al., 2012), although studies demonstrate improved child psychological health, satisfaction, family functioning, improved access to healthcare, reduced emergency presentations and better health service efficiency (Mikkelsen & Frederiksen, 2011; Smith, Swallow, & Coyne, 2015). Family‐centred care can improve information gathering and clinical acuity for healthcare professionals (Kuhlthau, Bloom, & Van Celave, 2011).…”

Section: Introductionmentioning

confidence: 99%

“…While FCC is endorsed widely, it is often poorly implemented and misunderstood (Mikkelsen & Frederiksen, 2011; Shields, 2010; Smith et al., 2015). Health professionals may not know how to apply the principles of FCC to everyday practice and patients and families may not appreciate what it means to participate in healthcare decisions, or what they should expect.…”

Section: Introductionmentioning

confidence: 99%

Family-centred care in cystic fibrosis: a pilot study in North Queensland, Australia

et al. 2017

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AimsThe aims were to: (i) examine perceptions of family‐centred care of parents of children with cystic fibrosis and healthcare professionals who care for them; (ii) test design and tools in a regional population.DesignQuantitative pilot study of existing questionnaire.MethodsThe methods involved were comparative, cross‐sectional survey of parents of children with cystic fibrosis and health staff in North Queensland, using “Perceptions of Family Centered Care – Parent” and “Perceptions of Family Centered Care – Staff” questionnaires; and descriptive study of tools.ResultsEighteen staff, 14 parents (78%, 61%); using Mann–Whitney U, showed no significant differences in scores in categories: ‘support’ ‘respect’, ‘collaboration’. Comments about suitability of questionnaires varied, but were largely positive.

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“…Parents, who sometimes feel isolated and overwhelmed often look to clinicians for help, but HCPs may struggle to meet their needs when faced with no standardised way of assessing parents' needs and, for example, if parents' first language is not English or they have limited health literacy [7]. Although studies acknowledge issues such as normalisation [2], parents' beliefs that professionals do not collaborate with them [8], the 'work' associated with parenting [9] and how families adjust, there is little guidance to help HCPs individualise parent-teaching. Therefore, HCPs tend to rely on intuition when assessing parents' learning needs [4,10].…”

Section: Introductionmentioning

confidence: 99%

Parents’ learning needs and preferences when sharing management of their child’s long-term/chronic condition: A systematic review

Nightingale

Friedl

Swallow

2015

Patient Education and Counseling

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Objective: This review aimed to 1) identify parents' learning needs and preferences when sharing the management of their child's long-term/chronic (long-term) condition and 2) inform healthcare professional support provided to parents across the trajectory. Methods: We conducted a literature search in seven health databases from 1990-2013. The quality of included studies was assessed using a critical appraisal tool developed for reviewing the strengths and weaknesses of qualitative, quantitative and mixed methods studies. Results: Twenty-three studies met our criteria and were included in the review. Three themes emerged from synthesis of the included studies: (1) parents' learning needs and preferences (2) facilitators to parents' learning, and (3) barriers to parents' learning. Conclusion:Asking parents directly about their learning needs and preferences may be the most reliable way for healthcare professionals to ascertain how to support and promote individual parents' learning when sharing management of their child's longterm condition. Practice Implications: With the current emphasis on parent-healthcare professional shared management of childhood long-term conditions, it is recommended that professionals base their assessment of parents' learning needs and preferences on identified barriers and facilitators to parental learning. This should optimise delivery of home-based care, thereby contributing to improved clinical outcomes for the child.

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Involving Parents in Managing Their Child's Long-Term Condition—A Concept Synthesis of Family-Centered Care and Partnership-in-Care

Cited by 146 publications

References 72 publications

What Is “Family-Centred Care”?

What Is “Family-Centred Care”?

Family-centred care in cystic fibrosis: a pilot study in North Queensland, Australia

Parents’ learning needs and preferences when sharing management of their child’s long-term/chronic condition: A systematic review

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