Converging Trends in Family Research and Pediatrics: Recent Findings for the American Academy of Pediatrics Task Force on the Family

Wertlieb, Donald

doi:10.1542/peds.111.s2.1572

Cited by 35 publications

(3 citation statements)

References 88 publications

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“…Family‐centred care refers to practices that engage patients and their families as integral, valued members involved in decision‐making and appraisal of their health care, and may contribute to higher levels of family satisfaction with care and lower levels of distress 9–11 . In paediatrics, family‐centred care recognizes that the family is the primary unit of support for a child's health care management and overall development 12 . Although there is no single definition of the term nor consensus on its processes or practices, the guiding principles of family‐centred care encompasses health care policies, strategies and interventions that treat patients and their families with dignity, promote collaboration with patients and families and focus on respectful interactions 13–17 .…”

Section: Introductionmentioning

confidence: 99%

“…[9][10][11] In paediatrics, family-centred care recognizes that the family is the primary unit of support for a child's health care management and overall development. 12 Although there is no single definition of the term nor consensus on its processes or practices, the guiding principles of family-centred care encompasses health care policies, strategies and interventions that treat patients and their families with dignity, promote collaboration with patients and families and focus on respectful interactions. [13][14][15][16][17] Meaningful engagement of patients and families in the co-design or study of interventions that affect them is consistent with a family-centred care approach and may improve intervention effectiveness and family satisfaction.…”

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confidence: 99%

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Family‐centred care interventions for children with chronic conditions: A scoping review

Chow,

Saad,

Al‐Baldawi

et al. 2024

Health Expectations

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IntroductionChildren with chronic conditions have greater health care needs than the general paediatric population but may not receive care that centres their needs and preferences as identified by their families. Clinicians and researchers are interested in developing interventions to improve family‐centred care need information about the characteristics of existing interventions, their development and the domains of family‐centred care that they address. We conducted a scoping review that aimed to identify and characterize recent family‐centred interventions designed to improve experiences with care for children with chronic conditions.MethodsWe searched Medline, Embase, PsycInfo and Cochrane databases, and grey literature sources for relevant articles or documents published between 1 January 2019 and 11 August 2020 (databases) or 7–20 October 2020 (grey literature). Primary studies with ≥10 participants, clinical practice guidelines and theoretical articles describing family‐centred interventions that aimed to improve experiences with care for children with chronic conditions were eligible. Following citation and full‐text screening by two reviewers working independently, we charted data covering study characteristics and interventions from eligible reports and synthesized interventions by domains of family‐centred care.ResultsOur search identified 2882 citations, from which 63 articles describing 61 unique interventions met the eligibility criteria and were included in this review. The most common study designs were quasiexperimental studies (n = 18), randomized controlled trials (n = 11) and qualitative and mixed‐methods studies (n = 9 each). The most frequently addressed domains of family‐centred care were communication and information provision (n = 45), family involvement in care (n = 37) and access to care (n = 30).ConclusionThis review, which identified 61 unique interventions aimed at improving family‐centred care for children with chronic conditions across a range of settings, is a concrete resource for researchers, health care providers and administrators interested in improving care for this high‐needs population.Patient or Public ContributionThis study was co‐developed with three patient partner co‐investigators, all of whom are individuals with lived experiences of rare chronic diseases as parents and/or patients and have prior experience in patient engagement in research (I. J., N. P., M. S.). These patient partner co‐investigators contributed to this study at all stages, from conceptualization to dissemination.

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Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

Family‐centred care interventions for children with chronic conditions: A scoping review

Chow,

Saad,

Al‐Baldawi

et al. 2024

Health Expectations

View full text Add to dashboard Cite

show abstract

“…3 In pediatrics, clinicians must recognize that the family plays an important role providing support for a sick child. By listening to parents, pediatricians can gain important information that enhances clinical decisions 4 and helps build better and friendlier health systems. 5 Availability of health providers who regularly share information with parents about the child’s health condition significantly boosts parental satisfaction and confidence.…”

Section: Introductionmentioning

confidence: 99%

Implementation of Family Centered Care for Neonates Admitted in a Special Care Baby Unit in Sierra Leone

Johnson

2024

PHMT

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Purpose To assess the feasibility of implementing family centered care and the impact this would have on parental satisfaction in a special care baby unit in Sierra Leone. Patients and Methods A cross-sectional, mixed methods study was conducted at the Rokupa Government Hospital, Sierra Leone. 16 nursing staff of the Special Care Baby Unit and 7 caregivers of neonates admitted in the unit participated in the study. Quantitative data on feasibility was obtained from nursing staff using a five-point Likert scale administered to staff before and after implementation of family centered care in the unit. Qualitative data on perception of impact was obtained through focus group discussions for caregivers whose neonates had received family centered care and a control group who had received standard unit care. Quantitative data was analyzed using univariate analysis and thematic analysis was undertaken for qualitative data. Results Before implementation, most nursing staff felt implementation of family centred care was not feasible (87.5%) and more than half of nursing staff either strongly agreed or agreed with each of the negative statements regarding the practice of family centred care indicating a generally negative perception. After implementation there was improvement in nursing staff perception of family centred care, however the majority still doubted the continued feasibility of this practice (68.8%). Qualitative discussions with caregivers demonstrated that caregivers whose babies received family centered care were less distressed and more satisfied during the period of admission than those who received routine care. Conclusion Family centered care improved the experiences of caregivers in the unit. Nursing staff also demonstrated a better understanding of the benefits of family centered care after it was implemented. Concerns regarding understaffing and the unit being too small to accommodate caregivers and staff at the same time need to be addressed. There is need to integrate family centered care into hospital policy.

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The Pediatrician's Role in Family Decision Making

2003

AMA Journal of Ethics

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The bounds of the patient-physician relationship are difficult to define in pediatrics because of the necessary involvement of the child's surrogate decision maker usually, the parent. The triadic relationship, patient-parentphysician, adds complexity because it often means considering both the child's best interests and what his or her parents see as the family's best interests. The literature has raised questions about the appropriate role of parental and family interests in clinical decision making for children.

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Converging Trends in Family Research and Pediatrics: Recent Findings for the American Academy of Pediatrics Task Force on the Family

Cited by 35 publications

References 88 publications

Family‐centred care interventions for children with chronic conditions: A scoping review

Family‐centred care interventions for children with chronic conditions: A scoping review

Implementation of Family Centered Care for Neonates Admitted in a Special Care Baby Unit in Sierra Leone

The Pediatrician's Role in Family Decision Making

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