Background
Fostering effective engagement, collaboration and empowerment are central to supporting
parents caring for children with long-term conditions.
Methods
A concept synthesis was undertaken to identify the shared antecedents and attributes
underpinning models of family-centered care and partnership-in-care.
Results
Thirty studies were reviewed; antecedents of models related to unclear roles, entrenched
professional practices, and lack of guidelines supporting their implementation; with
central attributes being building trust, listening to parent concerns and valuing
parents' knowledge of their child.
Conclusion
The key attributes are outlined in a practical framework of involvement which may
promote parent–professional collaboration for families of children with long-term
conditions.
Key words
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Journal of Pediatric Nursing: Nursing Care of Children and FamiliesAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Hospitalized children with chronic illness: Parental care giving needs and valuing parental experience.Journal of Pediatric Nursing. 2001; 16: 315-326
- Room for family-centred-care; A qualitative evaluation of a neonatal intensive care unit remodelling project.Journal of Neonatal Nursing. 2009; 15: 88-99
- How do nurses learn about family-centred care?.Paediatric Nursing. 1999; 11: 26-29
- A multisite study of health professionals' perceptions and practices of family-centered care.Journal of Family Nursing. 2002; 8: 408-429
- A rapid review of the current state of knowledge regarding lay-led self-management of chronic illness.National Institute Clinical Evidence, London2005
- A partnership with child and family.Senior Nurse. 1988; 8: 8-9
- Partnership nursing: Influences on involvement of informal carers.Journal of Advanced Nursing. 1995; 22: 1058-1062
- The lived experiences of fathers who have children with asthma; A phenomenological study.Journal of Pediatric Nursing. 2008; 23: 372-397
- Understanding the process of patient participation.in: Collins S. Britten N. Ruusuvuori J. Thompson A. Patient participation in healthcare consultations: Qualitative perspectives. Open University Press, Maidenhead2007: 3-21
- Parent participation: A concept analysis.Journal of Advanced Nursing. 1996; 23: 733-740
- Disruption of parent participation. Nurses’ strategies to manage parents on children’s wards.Journal of Clinical Nursing. 2008; 17: 3150-3158
- Families and health-care professionals' perspectives and expirations of family-centred-care: Hidden expectations and unclear roles.Health Expectations. 2013; https://doi.org/10.111/hex12104
- Challenging the philosophy of partnership with parents: A grounded theory study.International Journal of Nursing Studies. 2007; 44: 893-904
- A survey of nurses' practices and perceptions of family-centered care in Ireland.Journal of Family Nursing. 2013; 19: 469-488
- What does family-centred-care mean to nurse and how do they think it could be enhanced in practice?.Journal of Advanced Nursing. 2011; 67: 2561-2573
- Parents, nurses and paediatric nursing: A critical review.Journal of Advanced. 1993; 18: 1670-1680
- Moving family-centered care forward: Bereaved fathers' perspectives.Journal of Hospice and Palliative Nursing. 2013; 15: 163-170
- Within the Web: The family–practitioner relationship in the context of chronic childhood illness.Journal of Child Health Care. 2006; 10: 309-325
- The relationship of theory and practice in the acquisition of skills.in: Benner P. Tanner C.A. Chesla C.A. Expertise in nursing practice, caring, clinical judgment and ethics. Springer Publishing Company, New York1996
- Patient involvement in decision-making: The importance of a broad conceptualization.in: Edwards A. Elwyn G. Shared decision-making in healthcare. 2nd ed. Oxford University Press, Oxford2009: 17-22
- Parental responses to health care services for children with chronic conditions and their families: A comparison between Hong Kong and Scotland.Journal of Child Health Care. 2005; 9: 8-19
- Partnership in practice: What parents of a disabled child want from a generic health professional in Australia.Health and Social Care in the Community. 2010; 18: 624-632
- Concept synthesis and the art of nursing.Journal of Advanced Nursing. 2007; 62: 381-388
- Partnerships between parents and health care professionals to improve adolescent health.Journal of Adolescent Health. 2011; 49: 53-57
- Self-management education programmes by lay leaders for people with chronic conditions.Cochrane Database of Systematic Reviews. 2007;
- Re-thinking family-centred care across the continuum of children's healthcare.Child: Care, Health and Development. 2004; 30: 265-277
- Facilitating reflection in mothers of chronically ill children.Journal of Clinical Nursing. 1999; 8: 305-312
- Family-centered pediatric nursing care: State of the science.Journal of Pediatric Nursing. 2010; 25: 335-343
- Parental involvement and family-centered care in the diagnostic and treatment phases of childhood cancer: Results from a qualitative study.Journal of Pediatric Oncology Nursing. 2003; 20: 301-313
- Parents' and nurses' attitudes to family-centred care: An Irish perspective.Journal of Clinical Nursing. 2007; 16: 2341-2348
- Parents' information needs about the treatment of their chronically ill child: A qualitative study.Patient Education and Counseling. 2006; 62: 228-234
- Family-centred care: A concept analysis.Journal of Advanced Nursing. 1999; 29: 1178-1187
- Frequently asked questions.http://www.ipfcc.org/faq.html(accessed May 2014)Date: 2010
- Patient-centre healthcare review.2nd ed. International Alliance of Patients' Organizations, 2007
- The changing role of families in health care.Children's Health Care. 1990; 19: 234-241
- Parent or nurse? The experience of being a parent of technology-dependent child.Journal of Advanced Nursing. 2005; 51: 456-464
- Patterns of family management of childhood chronic conditions and their relationship to child and family functioning.Journal of Pediatric Nursing. 2013; 28 (online PMID 23602651): 5230535
- Delimiting family in syntheses of research on childhood chronic conditions and family life.Family Process. 2014; https://doi.org/10.1111/famp.12101
- When family-centered care is challenged by infectious disease: Pediatric health care delivery during the SARS outbreaks.Qualitative Health Research. 2006; 16: 47-60
- Family-centered rounds in Pakistani pediatric intensive care settings: Non-randomized pre- and post-study design.International Journal of Nursing Studies. 2013; 50: 717-726
- Parents' experiences of participation in care of hospitalised children: A qualitative study.International Journal of Nursing Studies. 2006; 43: 535-545
- Partnership: What does it mean today?.Journal of Child Health Care. 1999; 3: 28-32
- What does partnership in care mean for children's nurses?.Journal of Clinical Nursing. 2007; 16: 518-526
- Self-management education: History, definition, outcomes, and mechanisms.Annals of Behavioral Medicine. 2003; 26: 1-7
- An office or a bedroom? Challenges for family-centered care in the pediatric intensive care unit.Journal of Child Health Care. 2012; 16: 237-249
- Exploring family-centered care among pediatric oncology nurses.Journal of Pediatric Oncology Nursing. 2011; 28: 43-52
- Bridging the divide between families and health professionals' perspectives on family-centred-care.Health Expectations. 2005; 8: 74-85
- Family-school nurse partnership in primary school health care.Scandinavian Journal of Caring Sciences. 2013; 27: 195-202
- A concept analysis of family-centered care in the NICU.Neonatal Network. 2005; 24: 25-32
- Whither nursing models? The value of nursing theory in the context of evidence-based practice and multidisciplinary health care.Journal of Advanced Nursing. 2011; 68: 222-229
- Exploring the role of partnership in the home care of children with special health needs: Qualitative findings from two service evaluations.International Journal of Nursing Studies. 2008; 45: 714-726
- Patient-centredness: A conceptual framework and review of the empirical literature.Social Science and Medicine. 2000; 51: 1087-1110
- Family-centred care of children in hospital—A concept analysis.Journal of Advanced Nursing. 2011; 67: 1152-1162
- Continuity of care for children with complex chronic health condition: parents perspectives.BMC Health Services Research. 2009; 9: 242-253
- Information that informs rather than alienates families with disabled children: Developing a model of good practice.Health and Social Care in the Community. 2002; 10: 74-81
- Practices and perceptions of family-centred care among children's nurses in Ireland.Journal of Children and Young Peoples Nursing. 2007; 1: 312-319
- A concept for all the family, family centred care: A concept analysis.Professional Nurse. 1993; 8: 794-797
- Using focused ethnography in paediatric settings to explore professionals' and parents' attitudes towards expertise in managing chronic kidney disease stage 3–5.BMC Health Services Research. 2014; 4: 403
- Children with a long-term illness: Parents' experiences of care.Journal of Pediatric Nursing. 2006; 21: 297-304
- Implementing family-centred care: An exploration of the beliefs and practices of paediatric nurses.Australian Journal of Advanced Nursing. 2005; 23: 31-36
- Family-centered care: Do we practice what we preach?.Journal of Obstetric, Gynecologic, and Neonatal Nursing. 2004; 33: 421-427
- Parent participation in the hospitalised child.Journal of Advanced Nursing. 2008; 62: 622-641
- A systematic ethnography of school-age children with bleeding disorders and other chronic illnesses: Exploring children's perceptions of partnership roles in family-centred care of their chronic illness.Child: Care, Health & Development. 2012; 38: 863-869
- Parents' and service providers' perceptions of family-centred practice in a community-based, paediatric disability service in Australia.Child: Care, Health & Development. 2007; 33: 586-592
- Family-centered care for children with special health care needs.Association for the Care of Children's Health, Washington, DC1987
- Excerpts from family-centered care for children needing specialized health and developmental services.Paediatric Nursing. 1995; 21: 362-364
- Family-centred care: A review of qualitative studies.Journal of Clinical Nursing. 2006; 15: 1317-1323
- Family-centred care for hospitalised children aged 0–12 years.Cochrane Database Systematic Reviews. 2012;
- Parents' experiences of living with a child with a long-term condition: A rapid structured review of the literature.Health Expectations. 2013; https://doi.org/10.1111/hex.12040
- Parents' experiences of living with a child with hydrocephalus: A cross sectional interview based study.Health Expectations. 2013; https://doi.org/10.1111/hex.12164
- Are parents and professionals making shared decisions about a child's care on presentation of a suspected shunt malfunction: A mixed method study?.Health Expectations. 2013; https://doi.org/10.1111/hex.12106
- Parental perspectives on negotiation of their child's care in hospital.Nursing Children & Young People. 2013; 25: 24-28
- Mothers' evolving relationships with doctors and nurses during the chronic illness trajectory.Journal of Advanced Nursing. 2001; 36: 755-764
- Fathers and mothers developing skills in managing children's long-term medical conditions: How do their qualitative accounts compare?.Child: Care, Health and Development. 2011; 37: 512-523
- Fathers' contributions to the management of their child's long-term medical condition: A narrative review of the literature.Health Expectations. 2012; 15: 157-175
- Multidisciplinary teams, and parents, negotiating common ground in shared-care of children with long-term conditions: A mixed methods study.BMC Health Services Research. 2013; 13: 264
- Insights into patient and family-centered care through the hospital experiences of parents.Journal of Obstetric, Gynecological and Neonatal Nursing. 2013; 42: 121-131
- Strategies for theory construction in nursing.5th ed. Prentice Hall, Boston2011
- Care in the home for seriously ill children with complex needs: A narrative literature review.Journal of Child Health Care. 2014; https://doi.org/10.1177/1367493514538327
- Family-centred care: a qualitative study of Chinese and South Asian immigrant parents' experiences of care in paediatric oncology.Child Care Health Development. 2013; 39: 185-193
- Families' lived experience one year after a child was diagnoses with type 1 diabetes.Journal of Advanced Nursing. 2007; 60: 299-307
- A study of parental involvement in paediatric hospital care: implications for clinical practice.Journal of Pediatric Nursing. 2004; 19: 217-223
- Hospital staff perceptions of parental involvement in paediatric hospital care.Journal of Advanced Nursing. 2006; 53: 534-542
Article info
Publication history
Published online: December 03, 2014
Accepted:
October 19,
2014
Received in revised form:
October 16,
2014
Received:
June 8,
2014
Footnotes
1This review has not received commercial funding.
Identification
Copyright
© 2015 Elsevier Inc. Published by Elsevier Inc. All rights reserved.
