The Resilient Father: Navigating the Challenges of Caring for Children with Complex Healthcare Needs

Fatherhood United
Jan 7
6 min read

Published by Fatherhood United [FU] — www.fatherhoodunited.com

Fatherhood is transformative. When a child is diagnosed with a chronic illness or complex healthcare needs, that transformation becomes profound. Homes often shift into care hubs, calendars become treatment schedules, and fathers—historically underrepresented in caregiving research—emerge as essential advocates and skilled providers of care (Beacham & Deatrick, 2015; Hobson & Noyes, 2011). Although healthcare systems increasingly recognize the importance of engaging fathers, research shows that provider involvement remains inconsistent, which can affect family-centered care (Allport, Solomon, & Johnson, 2019; Panter-Brick et al., 2014).

This guide offers practical strategies and evidence-based insights for fathers navigating this demanding journey, however, this is just a guide and additional help and resources available.

FU • Navigating Complex Healthcare Needs

Processing the Diagnosis: The First Storm

The initial period after diagnosis often feels overwhelming. Fear, confusion, and grief are common responses, and many fathers experience a strong desire to “fix” what cannot be immediately resolved. Studies indicate that fathers of children with chronic illness report higher levels of anxiety compared to fathers of healthy children (Spurr et al., 2023; Woodgate, Gonzalez, Ripat, Edwards, & Rempel, 2024). Tools such as the Parenting Stress Index can help identify stress patterns and guide interventions (Abidin, 1995).

Practical steps:

Allow yourself time to process emotions. Emotional regulation is essential for resilience (Spurr et al., 2023).
Identify healthy outlets such as exercise, journaling, or time outdoors (Serani, 2025).
Bring a trusted person to medical appointments to help absorb complex information (Stohr, 2022).
Protect your family’s privacy by preparing a standard response for questions about your child’s health.

Redefining Roles: From Breadwinner to Care Provider

Many fathers transition from traditional roles to hands-on caregiving, which may include managing catheters, tracheostomies, and complex medication schedules (Beacham & Deatrick, 2015; Hobson & Noyes, 2011). Research on families managing tracheostomy care highlights both resilience and strain (Flynn, Whittaker, Donne, & Carter, 2023).

Strategies for role integration:

Become an informed advocate. Active involvement improves decision-making and collaboration (Allport et al., 2019; Panter-Brick et al., 2014).
Build technical confidence. Competence reduces stress and enhances daily care routines (Hobson & Noyes, 2011; Stohr, 2022).
Negotiate flexible work arrangements to sustain caregiving responsibilities (Gavin & Wysocki, 2006).

Building a Sense of Coherence (SOC)

A strong Sense of Coherence, which involves viewing life as comprehensible, manageable, and meaningful, helps fathers buffer stress and maintain well-being (Haraguchi & Takeuchi, 2024). Literature reviews emphasize that meaning-making is central to resilience and father–child connection (Davies, Rix, & Robb, 2024; Woodgate et al., 2024).

Three components:

Comprehensibility: Learn the condition and care routines to reduce uncertainty (Haraguchi & Takeuchi, 2024).
Manageability: Identify resources such as clinical teams, community supports, and peer networks (Panter-Brick et al., 2014).
Meaningfulness: Recognize personal growth through caregiving, including patience and perspective (Davies et al., 2024).

Daily Life Strategies

Structure creates stability for both child and parent. Clear communication and shared roles help transform medical tasks into moments of connection (Morawska, Calam, & Fraser, 2015; Stohr, 2022).

Recommendations:

Establish consistent routines to reduce stress and support adherence (Wysocki & Gavin, 2006; Morawska et al., 2015).
Use inclusive language such as “We are checking your blood sugar” to promote teamwork.
Support siblings by ensuring dedicated one-on-one time (Stohr, 2022).
Adapt home spaces for accessibility and play (Beacham & Deatrick, 2015).

Navigating Intimate Care

Personal care during adolescence can feel uncomfortable. Clear protocols, collaborative planning, and respect for privacy help fathers manage these tasks confidently (Hobson & Noyes, 2011; Stohr, 2022).

Recommendations:

Plan roles and boundaries with your partner and care team (Morawska et al., 2015).
Request step-by-step guidance from healthcare professionals (Stohr, 2022).
Normalize hygiene as essential care rather than a taboo (Flynn et al., 2023).

Evidence-Based Psychological Interventions

Targeted interventions improve coping and family functioning:

Behavioral Parent Training programs such as COACHES integrate active skill-building that fathers often prefer (Fabiano, Chacko, Pelham, & Mazzant, 2009; Chacko, Fabiano, Doctoroff, & Fortson, 2017).
Cognitive-Behavioral Therapy supports stress management and reduces behaviors that may inadvertently reinforce illness (Law, Fisher, Eccleston, & Palermo, 2019; Morawska et al., 2015).
Problem-Solving Therapy aligns with solution-focused coping styles (Morawska et al., 2015).
Acceptance and Commitment Therapy promotes psychological flexibility and can be delivered through web-based formats (Lappalainen et al., 2021).

Peer Support and Provider Engagement

Isolation undermines resilience. Peer networks and hospital-based parent groups provide validation and practical advice (Panter-Brick et al., 2014; Chacko et al., 2017). Provider practices that actively include fathers improve communication and adherence (Allport et al., 2019; Wysocki & Gavin, 2006).

Connection strategies:

Join father-specific networks to share experiences and reduce isolation (Panter-Brick et al., 2014).
Participate in hospital programs and shared reading routines to strengthen bonds (Chacko et al., 2017).
Request direct communication from providers to stay informed (Allport et al., 2019).

Prioritizing Self-Care

Self-care is essential for sustaining caregiving. Sleep, nutrition, and identity-preserving hobbies matter (Serani, 2025; Stohr, 2022). Parental well-being correlates with better adherence and family functioning (Wysocki & Gavin, 2006; Gavin & Wysocki, 2006).

Action steps:

Maintain consistent sleep and nutrition habits.
Engage in at least 30 minutes of physical activity daily (Serani, 2025).
Schedule non-medical time with your child to nurture connection (Stohr, 2022).

Finding Meaning and Joy

Despite challenges, many fathers describe caregiving as deeply meaningful (Woodgate et al., 2024; Davies et al., 2024). Celebrate milestones, express pride, and trust your expertise. You know your child best (Wysocki & Gavin, 2006; Panter-Brick et al., 2014).

Join Fatherhood United

Caring for a child with complex healthcare needs is not a journey you should walk alone. At Fatherhood United, we believe that every father deserves a network of support, practical resources, and a space to share experiences without judgment.

Join us at www.fatherhoodunited.com to connect with other dads who understand the challenges and triumphs of this path. Together, we share strategies, celebrate milestones, and build resilience—because strong fathers create strong families.

Your voice matters. Your experience matters. Your resilience matters. Become part of a community that stands with you every step of the way.

References

Abidin, R. R. (1995). Parenting stress index. Psychological Assessment Resources.

Allport, B. S., Solomon, B. S., & Johnson, S. B. (2019). The other parent: An exploratory survey of providers’ engagement of fathers in pediatric primary care. Clinical Pediatrics, 58(2), 829032.

Beacham, B. L., & Deatrick, J. A. (2015). Children with chronic conditions: Perspectives on condition management. Journal of Pediatric Nursing, 30(1), 25–35. https://doi.org/10.1016/j.pedn.2014.10.011

Chacko, A., Fabiano, G. A., Doctoroff, G. L., & Fortson, B. (2017). Engaging fathers in effective parenting for preschool children using shared book reading: A randomized controlled trial. Journal of Clinical Child & Adolescent Psychology, 47(1), 79–93. https://doi.org/10.1080/15374416.2016.1266648

Davies, A., Rix, J., & Robb, M. (2024). Fathers' relationships with their disabled children: A literature review. Disability Studies Quarterly, 43(3). https://doi.org/10.18061/dsq.v43i3.8744

Fabiano, G., Chacko, A., Pelham, W. E., & Mazzant, J. R. (2009). A comparison of behavioral parent training programs for fathers of children with attention-deficit/hyperactivity disorder. Behavior Therapy, 40(2), 190–204. https://doi.org/10.1016/j.beth.2008.05.002

Flynn, A. P., Whittaker, K., Donne, A., & Carter, B. (2023). Feeling stretched: Parents’ narratives about challenges to resilience when their child has a tracheostomy. Nursing Open.

Gavin, L., & Wysocki, T. (2006). Associations of paternal involvement in disease management with maternal and family outcomes in families with children with chronic illness. Journal of Pediatric Psychology, 31(5), 481–489. https://doi.org/10.1093/jpepsy/jsj043

Haraguchi, M., & Takeuchi, T. (2024). A sense of coherence (SOC) among the fathers of children with chronic illnesses. Nursing Open, 11, e2147. https://doi.org/10.1002/nop2.2147

Hobson, L., & Noyes, J. P. (2011). Fatherhood and children with complex healthcare needs: Qualitative study of fathering, caring and parenting. BMC Nursing, 10(1), 5. https://doi.org/10.1186/1472-6955-10-5

Lappalainen, P., Pakkala, I., Strömmer, J., Sairanen, E., Kaipainen, K., & Lappalainen, R. (2021). Supporting parents of children with chronic conditions: A randomized controlled trial of web-based and self-help ACT interventions. Internet Interventions, 24, 100382. https://doi.org/10.1016/j.invent.2021.100382

Law, E., Fisher, E., Eccleston, C., & Palermo, T. M. (2019). Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database of Systematic Reviews, 2019(3), CD009660. https://doi.org/10.1002/14651858.CD009660.pub4

Morawska, A., Calam, R., & Fraser, J. (2015). Parenting interventions for childhood chronic illness: A review and recommendations for intervention design and delivery. Journal of Child Health Care, 19(1), 5–17. https://doi.org/10.1177/1367493513496664

Panter-Brick, C., Burgess, A., Eggerman, M., McAllister, F., Pruett, K., & Leckman, J. F. (2014). Practitioner review: Engaging fathers—recommendations for a game change in parenting interventions based on a systematic review of the global evidence. Journal of Child Psychology and Psychiatry, 55(11), 1187–1212. https://doi.org/10.1111/jcpp.12280

Serani, D. (2025, May 10). Tips for families dealing with chronic illness in children. Psychology Today.

Spurr, S., Danford, C. A., Roberts, K. J., Sheppard-LeMoine, D., Silva-Rodrigues, F. M., Nunes, M. D. R., ... & Somanadhan, S. (2023). Fathers’ experiences of caring for a child with a chronic illness: A systematic review. Children, 10(2), 197. https://doi.org/10.3390/children10020197

Stohr, W. (2022). Caregiving after diagnosis: A guide for new family caregivers of children with disabilities and complex medical needs. Clinical Training Unit.

Woodgate, R. L., Gonzalez, M., Ripat, J. D., Edwards, M., & Rempel, G. (2024). Exploring fathers’ experiences of caring for a child with complex care needs through ethnography and arts-based methodologies. BMC Pediatrics, 24, 93. https://doi.org/10.1186/s12887-024-04567-8

Wysocki, T., & Gavin, L. (2006). Paternal involvement in the management of pediatric chronic diseases: Associations with adherence, quality of life, and health status. Journal of Pediatric Psychology, 31(5), 501–511. https://doi.org/10.1093/jpepsy/jsj042