Background and Significance:

An ethical imperative exists for pediatric psychologists to address the mental health needs of
parents/caregivers (Kahhan & Junger, 2021) and the recognition of caregiver mental health in the
context of pediatric settings (clinical and research) is an area of unmet need. Caregivers of
children with acute and chronic health conditions tend to have poorer quality of life, as well as
increased rates of anxiety, depression, and trauma compared to caregivers of healthy children;
these caregivers experience unique challenges to their economic, psychosocial, and physical
wellbeing (Alegría et al., 2018). Moreover, there are both short- and long-term consequences of
caregiver mental health on childhood outcomes; caregiver wellbeing directly impacts the
effectiveness of pediatric behavioral interventions, as well as parenting practices (Burns et al.,
2010; Gomez, 2021; Kahhan & Junger, 2021). Families are also more at-risk when experiencing
cumulative levels of stress, impacted by struggles of social determinants of health (experiencing
racial bias/prejudice, lack of social support or education, food and transportation instability).
Conversely, resiliency factors for caregivers include higher socio-economic status, education,
social support, and family functioning and cohesion (Trask et al., 2003). Given that caregivers
typically attend medical appointments and hospital stays in support of their children and
participate in research opportunities, pediatric psychologists are well-positioned to help identify,
treat, and/or refer caregivers for identified needs.

This factsheet serves to guide those involved in pediatric psychology and similar fields, to assist
in the development of structured programming, resources, or research in the area of caregiver
wellbeing, as part of the Society of Pediatric Psychology Division 54 Caregiver Wellbeing
Special Interest Group.

Evidence-Based Assessment Measures for Caregivers:

Research has demonstrated that mental health screening of parents is effective, accepted, and
feasible across medical settings for identifying parental distress.

Commonly used measures, available for free:

• Coping Health Inventory for Parents (McCubbin et al., 1983)
• Parental Stress Scale (Berry & Jones, 1995)
• Parenting Sense of Competence Scale (Johnston & Marsh, 1989)
• Patient Reported Outcomes Measurement Information System (Cella et al., 2019)
• The Warwick-Edinburgh Mental Well-Being Scale (Tennant et al., 2007)
• WHO-5 Well-Being Index (WHO, 1998)

Commonly used measures, available for purchase:

• Impact on Family Scale (Stein, 1980)
• Parenting Stress Index (Abidin, 1995)
• Psychosocial Assessment Tool (Kazak et al., 2018)

Evidence-Based Interventions for Caregivers:

• The most efficacious individual therapy modality for caregiver wellbeing and mental
  health is Problem Solving Therapy (Eccleston et al., 2015)
• In addition to individual therapy modalities, the following interventions are recommended:
  • Education and support groups (Eccleston et al., 2015)
  • Family advisory councils (Richard et al., 2020)

Research has also demonstrated that in-person and online didactic interventions that target
mental health awareness, skill development, and goal-setting are effective, accepted, and
feasible.

*Please note that the above interventions are for all types of caregivers (as opposed to specific
subsets, such as parents of children with cancer), and primarily focus on their own well-being as
opposed to focusing on directly optimizing their child’s functioning.

Diversity, Equity, and Inclusion Considerations:

There is a growing urgency to eliminate health disparities in pediatrics. COVID-19 called to the
forefront some of these issues, including systemic racism and the inequitable distribution of
social determinants of health across the population. Thus, while working with caregivers, areas
of diversity, equity, inclusion, and access should be emphasized (Kahhan & Junger, 2022).
Potential efforts include:

• Utilizing eHealth interventions for caregivers, to increase access to evidence-based
  treatments. These eHealth interventions may reduce barriers associated with time and
  transportation, however they rely on access to stable internet sources and electronic
  devices.
• Evaluating and responding to caregiver needs as a part of routine care, which improves
  access, decreases stigmatization, helps to improve child outcomes, and supports our
  colleagues in recognizing a broader range of needs.
• Building referral and resource networks and knowledge of these networks in
  interdisciplinary settings.
• Leveraging leadership skills, communication skills, relationship building techniques, and
  scientific methods to advocate for what is needed with regard to caregiver wellbeing.
• Continuing efforts to build a more diverse pediatric psychologist workforce.
• Enhancing competencies and increasing cultural humility in working with diverse
  caregivers.

Resources:

• Please reach out to the Caregiver Wellbeing SIG if you are seeking support in finding a
  measure or intervention that is right for your setting and need! More information can be
  found at Get Involved | Caregiver Wellbeing SIG (div54cwsig.wixsite.com)
• Caregiver Wellbeing SIG’s Instagram: Evidence-based information for caregivers of
  children with acute/chronic conditions. Information developed by psychologists and
  psychology trainees in the special interest group. https://www.instagram.com/caregiverwellbeingspp/
• Caring Bridge: Online tool for documenting and sharing your child’s journey.
  https://www.caringbridge.org
• Courageous Parents Network - A non-profit organization and educational platform
  that orients, empowers and accompanies families and providers caring for children with
  serious illness. CPN | Courageous Parents Network
• Kids and Caregivers: A hub for information, education, support resources, and
  connecting families. http://www.kidsandcaregivers.com/
• American Psychological Association’s Caregiving Page: Links to APA’s publications
  and advocacy pages regarding caregiving. https://www.apa.org/pi/about/publications/caregivers

Authors: Ameena Ahmed, Psy.D., Nicole Dempster, Ph.D., & Nicole Kahhan, Ph.D.

References

Abidin, Richard R. (1995). Parenting Stress Index: Professional Manual. Lutz, FL, Psychological
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Berry, J. O., & Jones, W. H. (1995). The Parental Stress Scale: Initial psychometric evidence.
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Eccleston, C., Fisher, E., Law, E., Bartlett, J., Palermo, T. M. (2015). Psychological interventions
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Johnston, C. and Marsh, E. J. (1989). A measure of parenting satisfaction and efficacy. Journal
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Junger, K. W., & Kahhan, N. A. (2022). Incorporating DEI informed-frameworks and increasing
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