Abstract
Children with medical complexity (CMC) are a medically fragile subset of children
who often rely on parental caregivers for substantial care needs. Caregivers of CMC
often experience adverse health outcomes such as depression and anxiety, sleep deprivation,
financial hardships, and social isolation. Caregivers of CMC are at risk of premature
mortality, which is thought to be mediated by chronic and elevated stress, as well
as psychiatric morbidity risk. Access to mental health care, where the needs of both
the caregiver and child are considered, can enable caregivers to meet high caregiving
demands and improve both child and caregiver outcomes. We describe the Caring for
the Caregiver (C4C) model, a novel integrated stepped care model consisting of a collaboration
between a psychiatrist and a paediatric complex care program. This model provides
support in 3 steps: 1) early identification of distress, 2) social work support and
psychotherapy, and 3) psychiatric care, including diagnosis or medication initiation,
for caregivers of CMC. This innovative model will be the first to embed support for
the mental health needs of caregivers of CMC within a paediatric team, facilitating
access to psychiatric care and serving as a foundation for future integrated stepped
care models.
Keywords
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 Academic PediatricsAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Children with medical complexity: an emerging population for clinical and research initiatives.Pediatrics. Mar 2011; 127: 529-538https://doi.org/10.1542/peds.2010-0910
- Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs.BMC Pediatr. Nov 26 2015; 15: 197https://doi.org/10.1186/s12887-015-0514-5
- Children with medical complexity in Canada.Paediatr Child Health. Dec 2013; 18: 518-522
- The Landscape of Medical Care for Children with Medical Complexity.2013
- Nursing's contribution to research about parenting children with complex chronic conditions: an integrative review, 2002 to 2012.Nurs Outlook. Sep-Oct 2013; 61: 266-290https://doi.org/10.1016/j.outlook.2013.03.008
- Families with children who are technology dependent: normalization and family functioning.West J Nurs Res. Feb 2012; 34: 52-71https://doi.org/10.1177/0193945910389623
- A National Mental Health Profile of Parents of Children With Medical Complexity.Pediatrics. Aug 2021; 148https://doi.org/10.1542/peds.2020-023358
- Risk factors for mental health difficulties in parents of children with cerebral palsy: a systematic review and meta-analysis.Clinical Psychologist. 2021; 25 (2021/01/02): 1-18https://doi.org/10.1080/13284207.2020.1829945
- Health Outcomes of Parents of Children with Chronic Illness: A Systematic Review and Meta-Analysis.J Pediatr. Mar 2020; 218 (e2): 166-177https://doi.org/10.1016/j.jpeds.2019.10.068
- Caring about caregivers: the role of paediatricians in supporting the mental health of parents of children with high caregiving needs.Arch Dis Child. Nov 2020; 105: 1028-1030https://doi.org/10.1136/archdischild-2019-318729
- Children with medical complexity: a scoping review of interventions to support caregiver stress.Child Care Health Dev. May 2017; 43: 323-333https://doi.org/10.1111/cch.12430
- Provincial Council for Maternal and Child Health.CCKO Functions of a Complex Care Clinic and Program Standard. 2017
- The effects of psychological treatment of maternal depression on children and parental functioning: a meta-analysis.Eur Child Adolesc Psychiatry. Feb 2015; 24: 237-245https://doi.org/10.1007/s00787-014-0660-6
- Key components of early intervention programs for preterm infants and their parents: a systematic review and meta-analysis.BMC Pregnancy Childbirth. 2013; 13: S10https://doi.org/10.1186/1471-2393-13-S1-S10
- Two-Generation Pediatric Care: A Modest Proposal.Pediatrics. Jan 2016; 137https://doi.org/10.1542/peds.2015-3447
- Dissemination of Integrated Care within Adult Primary Care Settings: The Collaborative Care Model.2016
- The Efficacy and Cost-Effectiveness of Stepped Care Prevention and Treatment for Depressive and/or Anxiety Disorders: A Systematic Review and Meta-Analysis.Sci Rep. Jul 5 2016; 6: 29281https://doi.org/10.1038/srep29281
- Collaborative care for depression and anxiety problems.Cochrane Database Syst Rev. Oct 17 2012; 10Cd006525https://doi.org/10.1002/14651858.CD006525.pub2
- Complex Care.SickKids, May 17, 2022 (Accessed)
- Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity.BMJ Open. Aug 1 2019; 9e028121https://doi.org/10.1136/bmjopen-2018-028121
- How we design feasibility studies.Am J Prev Med. May 2009; 36: 452-457https://doi.org/10.1016/j.amepre.2009.02.002
- A brief summary of pilot and feasibility studies: Exploring terminology, aims, and methods.European Journal of Integrative Medicine. 2018; 24: 65-70https://doi.org/10.1016/j.eujim.2018.10.017
- Outcomes for implementation research: conceptual distinctions, measurement challenges, and research agenda.Adm Policy Ment Health. Mar 2011; 38: 65-76https://doi.org/10.1007/s10488-010-0319-7
- Assessment of client/patient satisfaction: Development of a general scale.Evaluation and Program Planning. 1979; 2 (1979/01/01/): 197-207https://doi.org/10.1016/0149-7189(79)90094-6
- The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008.J Clin Epidemiol. 2010; 63: 1179-1194
- The Satisfaction With Life Scale.Journal of Personality Assessment. 1985; 49: 71-75https://doi.org/10.1207/s15327752jpa4901_13
- The PHQ-9: validity of a brief depression severity measure.Journal of general internal medicine. 2001; 16: 606-613https://doi.org/10.1046/j.1525-1497.2001.016009606.x
- A brief measure for assessing generalized anxiety disorder: the GAD-7.Arch Intern Med. May 22 2006; 166: 1092-1097https://doi.org/10.1001/archinte.166.10.1092
- Short screening scales to monitor population prevalences and trends in non-specific psychological distress.Psychol Med. 2002; 32: 959-976
- The Posttraumatic Stress Disorder Checklist for DSM-5 (PCL-5): Development and Initial Psychometric Evaluation.J Trauma Stress. Dec 2015; 28: 489-498https://doi.org/10.1002/jts.22059
- Childhood Illness-Related Parenting Stress: The Pediatric Inventory for Parents.Journal of Pediatric Psychology. 2001; 26: 155-162https://doi.org/10.1093/jpepsy/26.3.155
- Screening for caregivers at risk: Extended validation of the short version of the Burden Scale for Family Caregivers (BSFC-s) with a valid classification system for caregivers caring for an older person at home.BMC Health Services Research. 2018; 18 (2018/04/02): 229https://doi.org/10.1186/s12913-018-3047-4
- Psychometric testing of the revised 15-item Bakas Caregiving Outcomes Scale.Nurs Res. Sep-Oct 2006; 55: 346-355https://doi.org/10.1097/00006199-200609000-00007
- Virtual Care, Telemedicine Visits, and Real Connection in the Era of COVID-19: Unforeseen Opportunity in the Face of Adversity.Jama. 2021; 5: 437-438
- Maternal Depression and Early Intervention: A Call for an Integration of Services.Infants Young Child. Jan-Mar 2015; 28: 72-87https://doi.org/10.1097/iyc.0000000000000024
- It takes time: Impacts of Early Head Start that lead to reductions in maternal depression two years later.Infant Ment Health J. Mar 2007; 28: 151-170https://doi.org/10.1002/imhj.20127
- Reducing Maternal Depression and Its Impact on Young Children: Toward a Responsive Early Childhood Policy Framework.2008
- Depression Training in an Assisted Living Facility: A Pilot Study.J Psychosoc Nurs Ment Health Serv. May 1 2016; 54: 25-31https://doi.org/10.3928/02793695-20160201-01
- Filling the void in geriatric mental health: the Geropsychiatric Nursing Collaborative as a model for change.Nurs Outlook. Jul-Aug 2011; 59: 236-241https://doi.org/10.1016/j.outlook.2011.05.016
- Trends and opportunities in geropsychiatric nursing: enhancing practice through specialization and interprofessional education.J Nurs Educ. Jun 2013; 52: 317-321https://doi.org/10.3928/01484834-20130509-03
- Psychosocial interventions for caregivers of people with dementia: a systematic review.Aging Ment Health. May 2001; 5: 120-135https://doi.org/10.1080/713650019
- Impact of Psychoeducational Interventions on Distressed Family Caregivers.Journal of Clinical Geropsychology. 2000; 6 (2000/04/01): 91-110https://doi.org/10.1023/A:1009584427018
- Experiences with unregulated respite care among family caregivers of children dependent on respiratory technologies.J Child Health Care. Mar 2018; 22: 46-56https://doi.org/10.1177/1367493517746770
- Caring for the Family Caregiver: Lessons Learned in Child Health.Healthc Pap. 2015; 15: 40-46https://doi.org/10.12927/hcpap.2015.24397
- NICU-based Interventions To Reduce Maternal Depressive and Anxiety Symptoms: A Meta-analysis.Pediatrics. Mar 2017; 139https://doi.org/10.1542/peds.2016-1870
- Effectiveness of therapeutic behavioral interventions for parents of low birth weight premature infants: A review.Infant Ment Health J. Nov 2012; 33: 651-665https://doi.org/10.1002/imhj.21349
- Screening parents during child evaluations: exploring parent and child psychopathology in the same clinic.J Am Acad Child Adolesc Psychiatry. May 2011; 50: 441-450https://doi.org/10.1016/j.jaac.2011.02.002
- Screening for depression in the postpartum period: a comparison of three instruments.J Womens Health (Larchmt). May 2008; 17: 585-596https://doi.org/10.1089/jwh.2006.0248
- Implementation of a Mental Health Screening Program in a Pediatric Tertiary Care Setting.Clinical Pediatrics. 2019;
- The Value of Screening Parents for Their Risk of Developing Psychological Symptoms After PICU: A Feasibility Study Evaluating a Pediatric Intensive Care Follow-Up Clinic.Pediatr Crit Care Med. Nov 2015; 16: 808-813https://doi.org/10.1097/PCC.0000000000000488
Article Info
Publication History
Accepted:
June 1,
2022
Received:
December 13,
2021
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2022 Published by Elsevier Inc. on behalf of Academic Pediatric Association