Skip to main content
SpringerLink
Log in

Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies

  • Systematic Review
  • Published:
The Patient - Patient-Centered Outcomes Research Aims and scope Submit manuscript

Abstract

Background

Parent empowerment is often an expressed goal in clinical pediatrics and in pediatric research, but the antecedents and consequences of parent empowerment are not well established.

Objective

The objective of this systematic review was to synthesize potential antecedents and consequences of parent empowerment in healthcare settings.

Eligibility Criteria

The inclusion criteria were (1) studies with results about parent empowerment in the context of children’s healthcare or healthcare providers; and (2) qualitative studies, observational studies, and systematic reviews of such studies.

Information Sources

We searched the databases of PubMed, Web of Science, and Google Scholar (2006–2017) and reference lists.

Included Studies

Forty-four articles met the inclusion criteria.

Synthesis of Results

We identified six themes within consequences of empowerment: increased parent involvement in daily care, improved symptom management, enhanced informational needs and tools, increased involvement in care decisions, increased advocacy for child, and engagement in empowering others. Six themes summarizing antecedents of empowerment also emerged: parent–provider relationships, processes of care, experiences with medical care, experiences with community services, receiving informational/emotional support, and building personal capacity and narrative. We synthesized these findings into a conceptual model to guide future intervention development and evaluation.

Strengths and Limitations of Evidence

Non-English articles were excluded.

Interpretation

Parent empowerment may enhance parent involvement in daily care and care decisions, improve child symptoms, enhance informational needs and skills, and increase advocacy and altruistic behaviors. Parent empowerment may be promoted by the parent–provider relationship and care processes, finding the right fit of medical and community services, and attention to the cognitive and emotional needs of parents.

Clinical Registration No

PROSPERO 2017:CRD42017059478

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. World Health Organization. Health promotion glossary. Geneva: World Health Organization; 1998.

    Google Scholar 

  2. Kuhlthau KA, Bloom S, Van Cleave J, Knapp AA, Romm D, Klatka K, et al. Evidence for family-centered care for children with special health care needs: a systematic review. Acad Pediatr. 2011;11(2):136–43. https://doi.org/10.1016/j.acap.2010.12.014.

    Article  PubMed  Google Scholar 

  3. Council on Children with Disabilities, Medical Home Implementation Project Advisory C. Patient- and family-centered care coordination: a framework for integrating care for children and youth across multiple systems. Pediatrics. 2014;133(5):e1451–60. https://doi.org/10.1542/peds.2014-0318.

  4. Wyatt KD, List B, Brinkman WB, Prutsky Lopez G, Asi N, Erwin P, et al. Shared decision making in pediatrics: a systematic review and meta-analysis. Acad Pediatr. 2015;15(6):573–83. https://doi.org/10.1016/j.acap.2015.03.011.

    Article  PubMed  Google Scholar 

  5. Adams RC, Levy SE, Council on Children with Disabilities. Shared decision-making and children with disabilities: pathways to consensus. Pediatrics. 2017. https://doi.org/10.1542/peds.2017-0956.

    Article  PubMed  Google Scholar 

  6. Cene CW, Johnson BH, Wells N, Baker B, Davis R, Turchi R. A narrative review of patient and family engagement: the “foundation” of the medical “home”. Med Care. 2016;54(7):697–705. https://doi.org/10.1097/MLR.0000000000000548.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Committee on Quality Health Care in America. Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy Press; 2001.

    Google Scholar 

  8. Perrin EC, Shapiro E. Health locus of control beliefs of healthy children, children with a chronic physical illness, and their mothers. J Pediatr. 1985;107(4):627–33.

    Article  PubMed  CAS  Google Scholar 

  9. Popay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M, et al. Guidance on the conduct of narrative synthesis in systematic reviews. Prod ESRC Methods Programm Version. 2006;1:b92.

    Google Scholar 

  10. Barnett-Page E, Thomas J. Methods for the synthesis of qualitative research: a critical review. BMC Med Res Methodol. 2009;9(1):59. https://doi.org/10.1186/1471-2288-9-59.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Higgins JPT, Green S, editors. Cochrane handbook for systematic reviews of interventions. Version 5.1.0 (updated March 2011). The Cochrane Collaboration. http://handbook.cochrane.org. Accessed 10 Oct 2018.

  12. PCORI. PCORI engagement rubric. 2015. https://www.pcori.org/sites/default/files/Engagement-Rubric.pdf. Accessed 10 Oct 2018.

  13. Ray KN, Ashcraft LE, Kahn JM, Mehrotra A, Miller E. Family perspectives on high-quality pediatric subspecialty referrals. Acad Pediatr. 2016;16(6):594–600. https://doi.org/10.1016/j.acap.2016.05.147.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Willis CE, Reid S, Elliott C, Nyquist A, Jahnsen R, Rosenberg M, et al. ‘It’s important that we learn too’: empowering parents to facilitate participation in physical activity for children and youth with disabilities. Scand J Occup Ther. 2017. https://doi.org/10.1080/11038128.2017.1378367.

    Article  PubMed  Google Scholar 

  15. Coutinho MT, Kopel SJ, Williams B, Dansereau K, Koinis-Mitchell D. Urban caregiver empowerment: caregiver nativity, child-asthma symptoms, and emergency-department use. Fam Syst Health. 2016;34(3):229–39. https://doi.org/10.1037/fsh0000206.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Henderson RJ, Johnson A, Moodie S. Parent-to-parent support for parents with children who are deaf or hard of hearing: a conceptual framework. Am J Audiol. 2014;23(4):437–48. https://doi.org/10.1044/2014_AJA-14-0029.

    Article  PubMed  Google Scholar 

  17. Cox T. Caregivers reflecting on the early days of childhood cancer. Eur J Cancer Care (Engl). 2018. https://doi.org/10.1111/ecc.12499. (Epub 2016 Apr 20).

  18. Davis TS, Gavazzi SM, Scheer SD, Uppal R. Measuring individualized parent advocate services in children’s mental health: a contextualized theoretical application. J Child Fam Stud. 2010;20(5):669–84. https://doi.org/10.1007/s10826-010-9443-y.

    Article  Google Scholar 

  19. Fox GL, Nordquist VM, Billen RM, Savoca EF. Father involvement and early intervention: effects of empowerment and father role identity. Fam Relat. 2015;64(4):461–75. https://doi.org/10.1111/fare.12156.

    Article  Google Scholar 

  20. Kruijsen-Terpstra AJ, Verschuren O, Ketelaar M, Riedijk L, Gorter JW, Jongmans MJ, et al. Parents’ experiences and needs regarding physical and occupational therapy for their young children with cerebral palsy. Res Dev Disabil. 2016;53–54:314–22. https://doi.org/10.1016/j.ridd.2016.02.012.

    Article  PubMed  Google Scholar 

  21. Casagrande KA, Ingersoll BR. Service delivery outcomes in ASD: role of parent education, empowerment, and professional partnerships. J Child Fam Stud. 2017;26(9):2386–95. https://doi.org/10.1007/s10826-017-0759-8.

    Article  Google Scholar 

  22. Fujioka H, Ogasawara A, Okubo Y, Ito M. Empowerment process of mothers rearing children with disabilities in mother and child residential rehabilitation program. Med Health Sci Res Bull Tsukuba Int Univ. 2012;3:41–8.

    Google Scholar 

  23. Timberlake MT, Leutz WN, Warfield ME, Chiri G. “In the driver’s seat”: parent perceptions of choice in a participant-directed medicaid waiver program for young children with autism. J Autism Dev Disord. 2014;44(4):903–14. https://doi.org/10.1007/s10803-013-1942-4.

    Article  PubMed  Google Scholar 

  24. Gaughan V, Logan D, Sethna N, Mott S. Parents’ perspective of their journey caring for a child with chronic neuropathic pain. Pain Manag Nurs. 2014;15(1):246–57. https://doi.org/10.1016/j.pmn.2012.09.002.

    Article  PubMed  Google Scholar 

  25. Hewetson R, Singh S. The lived experience of mothers of children with chronic feeding and/or swallowing difficulties. Dysphagia. 2009;24(3):322–32. https://doi.org/10.1007/s00455-009-9210-7.

    Article  PubMed  Google Scholar 

  26. Panicker L. Nurses’ perceptions of parent empowerment in chronic illness. Contemp Nurse. 2013;45(2):210–9. https://doi.org/10.5172/conu.2013.45.2.210.

    Article  PubMed  Google Scholar 

  27. Brown FL, Whittingham K, Sofronoff K, Boyd RN. Parenting a child with a traumatic brain injury: experiences of parents and health professionals. Brain Inj. 2013;27(13–14):1570–82. https://doi.org/10.3109/02699052.2013.841996.

    Article  PubMed  Google Scholar 

  28. King G, Schwellnus H, Servais M, Baldwin P. Solution-focused coaching in pediatric rehabilitation: investigating transformative experiences and outcomes for families. Phys Occup Ther Pediatr. 2017. https://doi.org/10.1080/01942638.2017.1379457.

    Article  PubMed  Google Scholar 

  29. Holmbeck GN, Alriksson-Schmidt AI, Bellin MH, Betz C, Devine KA. A family perspective: how this product can inform and empower families of youth with spina bifida. Pediatr Clin N Am. 2010;57(4):919–34. https://doi.org/10.1016/j.pcl.2010.07.012.

    Article  Google Scholar 

  30. Bellin MH, Land C, Newsome A, Kub J, Mudd SS, Bollinger ME, et al. Caregiver perception of asthma management of children in the context of poverty. J Asthma. 2017;54(2):162–72. https://doi.org/10.1080/02770903.2016.1198375.

    Article  PubMed  Google Scholar 

  31. Yousafzai AK, Farrukh Z, Khan K. A source of strength and empowerment? An exploration of the influence of disabled children on the lives of their mothers in Karachi, Pakistan. Disabil Rehabil. 2011;33(12):989–98. https://doi.org/10.3109/09638288.2010.520811.

    Article  PubMed  Google Scholar 

  32. Munson MR, Hussey D, Stormann C, King T. Voices of parent advocates within the systems of care model of service delivery. Child Youth Serv Rev. 2009;31(8):879–84. https://doi.org/10.1016/j.childyouth.2009.04.001.

    Article  Google Scholar 

  33. Gadepalli SK, Canvasser J, Eskenazi Y, Quinn M, Kim JH, Gephart SM. Roles and experiences of parents in necrotizing enterocolitis: an international survey of parental perspectives of communication in the NICU. Adv Neonatal Care. 2017;17(6):489–98. https://doi.org/10.1097/ANC.0000000000000438.

    Article  PubMed  Google Scholar 

  34. Coyne I, McNamara N, Healy M, Gower C, Sarkar M, McNicholas F. Adolescents’ and parents’ views of child and adolescent mental health services (CAMHS) in Ireland. J Psychiatr Ment Health Nurs. 2015;22(8):561–9. https://doi.org/10.1111/jpm.12215.

    Article  PubMed  CAS  Google Scholar 

  35. Neely-Barnes SL, Graff JC, Roberts RJ, Hall HR, Hankins JS. “It’s our job”: qualitative study of family responses to ableism. Intellect Dev Disabil. 2010;48(4):245–58. https://doi.org/10.1352/1934-9556-48.4.245.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Decker KA, Miller WR, Buelow JM. Parent perceptions of family social supports in families with children with epilepsy. J Neurosci Nurs. 2016;48(6):336–41. https://doi.org/10.1097/JNN.0000000000000243.

    Article  PubMed  Google Scholar 

  37. Rafferty KA, Sullivan SL. “You know the medicine, I know my kid”: how parents advocate for their children living with complex chronic conditions. Health Commun. 2017;32(9):1151–60. https://doi.org/10.1080/10410236.2016.1214221.

    Article  PubMed  Google Scholar 

  38. Adelsperger S, Prows CA, Myers MF, Perry CL, Chandler A, Holm IA, et al. Parental perception of self-empowerment in pediatric pharmacogenetic testing: the reactions of parents to the communication of actual and hypothetical CYP2D6 test results. Health Commun. 2017;32(9):1104–11. https://doi.org/10.1080/10410236.2016.1214216.

    Article  PubMed  Google Scholar 

  39. Sullivan CE. Cybersupport: empowering asthma caregivers. Pediatr Nurs. 2008;34(3):217–24.

    PubMed  Google Scholar 

  40. Wong ST, Lynam MJ, Khan KB, Scott L, Loock C. The social paediatrics initiative: a RICHER model of primary health care for at risk children and their families. BMC Pediatr. 2012;12:158. https://doi.org/10.1186/1471-2431-12-158.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Anderson K, Balandin S, Stancliffe R. Australian parents’ experiences of speech generating device (SGD) service delivery. Dev Neurorehabil. 2014;17(2):75–83. https://doi.org/10.3109/17518423.2013.857735.

    Article  PubMed  Google Scholar 

  42. Fixter V, Butler C, Daniels J, Phillips S. A Qualitative analysis of the information needs of parents of children with cystic fibrosis prior to first admission. J Pediatr Nurs. 2017;34:e29–33. https://doi.org/10.1016/j.pedn.2017.01.007.

    Article  PubMed  Google Scholar 

  43. Vuorenmaa M, Halme N, Perala ML, Kaunonen M, Astedt-Kurki P. Perceived influence, decision-making and access to information in family services as factors of parental empowerment: a cross-sectional study of parents with young children. Scand J Caring Sci. 2016;30(2):290–302. https://doi.org/10.1111/scs.12243.

    Article  PubMed  Google Scholar 

  44. Lotz JD, Daxer M, Jox RJ, Borasio GD, Fuhrer M. “Hope for the best, prepare for the worst”: a qualitative interview study on parents’ needs and fears in pediatric advance care planning. Palliat Med. 2017;31(8):764–71. https://doi.org/10.1177/0269216316679913.

    Article  PubMed  Google Scholar 

  45. Dellenmark-Blom M, Wigert H. Parents’ experiences with neonatal home care following initial care in the neonatal intensive care unit: a phenomenological hermeneutical interview study. J Adv Nurs. 2014;70(3):575–86. https://doi.org/10.1111/jan.12218.

    Article  PubMed  Google Scholar 

  46. Konrad SC. What parents of seriously ill children value: parent-to-parent connection and mentorship. Omega (Westport). 2007;55(2):117–30. https://doi.org/10.2190/OM.55.2.b.

    Article  Google Scholar 

  47. Bell M, Fitzgerald R, Legge M. Parent peer advocacy, information and refusing disability discourses. Kotuitui NZ J Soc Sci Online. 2013;8(1–2):1–12.

    Google Scholar 

  48. Sullivan-Bolyai S, Lee MM. Parent mentor perspectives on providing social support to empower parents. Diabetes Educ. 2011;37(1):35–43. https://doi.org/10.1177/0145721710392248.

    Article  PubMed  Google Scholar 

  49. DeHoff BA, Staten LK, Rodgers RC, Denne SC. The role of online social support in supporting and educating parents of young children with special health care needs in the United States: a scoping review. J Med Internet Res. 2016;18(12):e333. https://doi.org/10.2196/jmir.6722.

    Article  PubMed  PubMed Central  Google Scholar 

  50. Davis TS, Scheer SD, Gavazzi SM, Uppal R. Parent advocates in children’s mental health: program implementation processes and considerations. Adm Policy Ment Health. 2010;37(6):468–83. https://doi.org/10.1007/s10488-010-0288-x.

    Article  PubMed  Google Scholar 

  51. Levine KA. Against all odds: resilience in single mothers of children with disabilities. Soc Work Health Care. 2009;48(4):402–19. https://doi.org/10.1080/00981380802605781.

    Article  PubMed  Google Scholar 

  52. Wakimizu R, Yamaguchi K, Fujioka H. Family empowerment and quality of life of parents raising children with developmental disabilities in 78 Japanese families. Int J Nurs Sci. 2017;4(1):38–45. https://doi.org/10.1016/j.ijnss.2016.12.004.

    Article  PubMed  Google Scholar 

  53. Gannoni AF, Shute RH. Parental and child perspectives on adaptation to childhood chronic illness: a qualitative study. Clin Child Psychol Psychiatry. 2010;15(1):39–53. https://doi.org/10.1177/1359104509338432.

    Article  PubMed  Google Scholar 

  54. Bode AA, George MW, Weist MD, Stephan SH, Lever N, Youngstrom EA. The impact of parent empowerment in children’s mental health services on parenting stress. J Child Fam Stud. 2016;25(10):3044–55. https://doi.org/10.1007/s10826-016-0462-1.

    Article  Google Scholar 

  55. Weiss JA, Cappadocia MC, MacMullin JA, Viecili M, Lunsky Y. The impact of child problem behaviors of children with ASD on parent mental health: the mediating role of acceptance and empowerment. Autism. 2012;16(3):261–74. https://doi.org/10.1177/1362361311422708.

    Article  PubMed  Google Scholar 

  56. Martinez KG, Perez EA, Ramirez R, Canino G, Rand C. The role of caregivers’ depressive symptoms and asthma beliefs on asthma outcomes among low-income Puerto Rican children. J Asthma. 2009;46(2):136–41. https://doi.org/10.1080/02770900802492053.

    Article  PubMed  PubMed Central  Google Scholar 

  57. Huscroft-D’Angelo J, Trout AL, Lambert MC, Thompson R. Caregiver perceptions of empowerment and self-efficacy following youths’ discharge from residential care. J Fam Soc Work. 2017;20(5):433–56. https://doi.org/10.1080/10522158.2017.1350893.

    Article  Google Scholar 

  58. Committee on Hospital Care. American Academy of Pediatrics. Family-centered care and the pediatrician’s role. Pediatrics. 2003;112(3 Pt 1):691–7.

    Article  Google Scholar 

Download references

Acknowledegments

We gratefully acknowledge the time and contribution of our stakeholder group, the Pediatric Care Delivery Consultants, to this work.

Author information

Authors and Affiliations

  1. Department of Critical Care Medicine, University of Pittsburgh School of Medicine, 4200 Fifth Avenue, Pittsburgh, PA, 15260, USA

    Laura Ellen Ashcraft

  2. University of Pittsburgh School of Social Work, Pittsburgh, PA, USA

    Laura Ellen Ashcraft

  3. Department of Pediatrics, University of Pittsburgh, School of Medicine and Children’s Hospital of Pittsburgh of UPMC, Pittsburgh, PA, USA

    Miya Asato, Amy J. Houtrow, Elizabeth Miller & Kristin N. Ray

  4. Department of Physical Medicine and Rehabilitation, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA

    Amy J. Houtrow

  5. Section of Palliative Care and Medical Ethics, Department of Medicine, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA

    Dio Kavalieratos

Authors
  1. Laura Ellen Ashcraft
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Miya Asato
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Amy J. Houtrow
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Dio Kavalieratos
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Elizabeth Miller
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Kristin N. Ray
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Laura Ellen Ashcraft.

Ethics declarations

Funding

This study was supported in part by a grant from the Agency for Healthcare Research and Quality (K12HS022989, Patient Centered Outcomes Research Institutional Mentored Career Development Award, Kristin N. Ray) and the Children’s Hospital of Pittsburgh of the University of Pittsburgh Medical Center (Kristin N. Ray). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funders. The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Conflict of interest

Miya Asato receives salary support from HRSA #T73MC00036 (LEND Program at the University of Pittsburgh) and NINDS U24NS107166 (Network of Excellence in Neuroscience Clinical Trials – University of Pittsburgh CRS), Medical Advisory for Epilepsy Western Central PA, and the Emma Bursick Memorial Foundation. Dio Kavalieratos receives research support from the Cystic Fibrosis Foundation, and from the National Heart, Lung, and Blood Institute (K01HL133466). He has no non-financial conflicts of interest. Elizabeth Miller has received a mid-career development award from the National Institutes of Health, K24HD075862. Kristin N. Ray has received research support from the Agency for Healthcare Research and Quality (K12HS022989) and the Children’s Hospital of Pittsburgh of the University of Pittsburgh Medical Center. She has no non-financial conflicts of interest. Laura Ellen Ashcraft and Amy J. Houtrow have no financial or non-financial conflicts of interest that are directly relevant to the contents of this article.

Author contributions

LEA and KNR conceptualized the study. LEA, MA, AJH, EM, and KNR contributed to the conceptual design, and LEA, DK, and KNR contributed to the methodological design. LEA and KNR completed the literature search, literature review, and data extraction. LEA, MA, AJH, DK, EM, and KNR participated in the analysis and interpretation of results. LEA drafted the manuscript and all authors critically revised the manuscript for important intellectual content. All authors approve the final version to be published and agree to be accountable for all aspects of the work.

Data availability

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary material 1 (DOCX 17 kb)

Supplementary material 2 (DOCX 30 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Ashcraft, L.E., Asato, M., Houtrow, A.J. et al. Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies. Patient 12, 199–212 (2019). https://doi.org/10.1007/s40271-018-0336-2

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s40271-018-0336-2

Search

Navigation