The emotional impact of CHD on the family

The diagnosis of CHD, whether made prenatally or after birth, is often experienced as a profound psychological crisis for families. Although advances in fetal diagnosis allow earlier counselling and care planning, they do not eliminate the emotional impact of learning that a child has a potentially life-threatening cardiac condition. Parents commonly describe grief, fear, uncertainty, and symptoms of acute or posttraumatic stress following diagnosis. ^{Reference Sood, Newburger and Anixt4,Reference Rychik, Donaghue and Levy24}

Following birth, the realities of intensive care and cardiac surgery often compound this distress. Parents are suddenly immersed in unfamiliar medical environments characterised by complex technology, prolonged waiting, invasive procedures, and uncertainty regarding outcomes. ^{Reference Wei, Roscigno, Hanson and Swanson6,Reference Kasparian, Kan, Sood, Wray, Pincus and Newburger25} ) Children with critical CHD may require early surgery involving cardiopulmonary bypass, prolonged ventilation, extracorporeal life support, or staged palliation. ^{Reference Marino, Lipkin and Newburger3,Reference Sood, Newburger and Anixt4} Witnessing these lifesaving interventions while their normal caregiving role is disrupted frequently leaves parents feeling powerless and emotionally overwhelmed. ^{Reference Wei, Roscigno, Hanson and Swanson6,Reference Kasparian, Kan, Sood, Wray, Pincus and Newburger25}

Psychological distress frequently persists throughout the child’s clinical journey. Parents of children with CHD experience significantly higher rates of anxiety, depression, sleep disturbance, chronic stress, and posttraumatic stress symptoms than parents of healthy children. ^{Reference Woolf-King, Anger, Arnold, Weiss and Teitel7–Reference Lumsden, Smith and Wittkowski11} Emotional burden may be further compounded by repeated hospitalisations, financial pressures, employment disruption, and concerns regarding future clinical deterioration. ^{Reference Wei, Roscigno, Hanson and Swanson6,Reference Connor, Kline, Mott, Harris and Jenkins9–Reference Lumsden, Smith and Wittkowski11}

For many families, uncertainty evolves from an acute reaction at diagnosis into a chronic feature of everyday life. Even after successful surgical repair, concerns regarding neurodevelopment, arrhythmias, exercise capacity, future interventions, ventricular assist device support, heart transplantation, and long-term survival may persist throughout childhood and into adult life. ^{Reference Marelli, Ionescu-Ittu, Mackie, Guo, Dendukuri and Kaouache2–Reference Sood, Newburger and Anixt4,Reference Jackson, Frydenberg, Liang, Higgins and Murphy10,Reference Lumsden, Smith and Wittkowski11} This enduring uncertainty shapes parental decision-making, family routines, and perceptions of the future, while the psychological burden may become particularly pronounced for families facing advanced heart failure therapies such as ventricular assist devices or heart transplantation. ^{Reference Kasparian, Kan, Sood, Wray, Pincus and Newburger25,Reference Rea, McCormick, Lim and Cousino38}

Despite these challenges, many families demonstrate remarkable resilience. Adaptation is supported by strong family relationships, effective communication with healthcare professionals, social support, and access to psychological services. ^{Reference Wei, Roscigno, Hanson and Swanson6,Reference Jackson, Frydenberg, Liang, Higgins and Murphy10,Reference Lumsden, Smith and Wittkowski11,Reference Lisanti26} Resilience should not be viewed as the absence of suffering but rather as the capacity to maintain hope, adapt to uncertainty, and find meaning while living with the ongoing challenges of CHD.

The perspectives of children and adolescents

Many children and adolescents with CHD wish to participate fully in everyday childhood and adolescence despite ongoing medical surveillance and treatment. Beyond the physical consequences of CHD, many young people must reconcile awareness of their cardiac condition with a desire for acceptance, normality, and inclusion among their peers. ^{Reference Berghammer, Dellborg and Ekman27,Reference Bratt and Moons28} Friendships, participation in physical activity, increasing independence, and the opportunity to engage in everyday social experiences become central aspects of psychosocial well-being during childhood and adolescence. ^{Reference Rassart, Luyckx, Apers, Goossens and Moons17,Reference Knowles, Day, Wade, Bull, Wren and Dezateux18,Reference Berghammer, Dellborg and Ekman27–Reference John, Jackson and Moons29}

Common questions voiced by young people with CHD may include:

• • Will I fit in?

• • Can I play sports?

• • Will I be treated differently?

• • Can I date?

• • Will someone love me?

• • Can I live normally?

These questions reflect broader developmental concerns involving identity, belonging, autonomy, body image, intimacy, and social acceptance. ^{Reference Rassart, Luyckx, Apers, Goossens and Moons17,Reference Knowles, Day, Wade, Bull, Wren and Dezateux18,Reference Berghammer, Dellborg and Ekman27} Peer relationships become increasingly important during adolescence and play a central role in identity formation. ^{Reference Rassart, Luyckx, Apers, Goossens and Moons17,Reference Berghammer, Dellborg and Ekman27} Loneliness and perceived social isolation have been associated with depressive symptoms and poorer self-reported quality of life among adolescents living with CHD. ^{Reference Knowles, Day, Wade, Bull, Wren and Dezateux18,Reference Bratt and Moons28}

Participation in physical activity and sport contributes to confidence, social participation, and overall quality of life. ^{Reference Knowles, Day, Wade, Bull, Wren and Dezateux18,Reference Silva, Vaz and Areias23} However, opportunities may be influenced by symptoms, perceived limitations, exercise restrictions, and advice from families or healthcare professionals. ^{Reference Knowles, Day, Wade, Bull, Wren and Dezateux18,Reference Silva, Vaz and Areias23}

As adolescents mature, developing condition knowledge, self-efficacy, self-management skills, and increasing independence become central to preparation for adult care. ^{Reference Sable, Foster and Uzark19,Reference Stewart, Chahal and Kovacs20} Successful transition is associated with age-appropriate knowledge of CHD, self-efficacy, and constructive involvement of parents and healthcare professionals.Reference Sable, Foster and Uzark ^{19 ,} Reference Stewart, Chahal and Kovacs ²⁰ Developmentally appropriate transition programmes should therefore address not only transfer between services but also autonomy, education, lifestyle, relationships, vocational planning, and participation in adult life. Psychosocial and relational needs evolve across developmental stages, from prenatal diagnosis and infancy through childhood, adolescence, and young adulthood, requiring developmentally responsive forms of support (Table 1). ^{Reference Sable, Foster and Uzark19–Reference Moons, Pinxten and Dedroog21,Reference John, Jackson and Moons29}

Table 1.

Psychosocial needs across developmental stages in CHD

Table 1. Long description

A table with four columns and six rows, including a header row. The columns are labeled Developmental stage, Key child challenges, Key family and relational challenges, and Relationship-centred interventions. The rows detail the challenges and interventions for each developmental stage: Prenatal diagnosis, Neonatal period, Early childhood, School age, Adolescence, and Young adulthood. Each row provides specific challenges and corresponding interventions for children and families at different stages of development in the context of CHD.

Supportive friendships and inclusive school environments contribute to psychosocial adaptation and resilience. ^{Reference Rassart, Luyckx, Apers, Goossens and Moons17,Reference Fleming, Fitton and Steiner22,Reference Bratt, Järvholm, Ekman-Joelsson, Mattson and Mellander35} Appropriate opportunities for physical activity also improve confidence and quality of life. ^{Reference Knowles, Day, Wade, Bull, Wren and Dezateux18,Reference Silva, Vaz and Areias23} Successful long-term outcomes should therefore be evaluated not only through survival but also through quality of life, belonging, autonomy, and educational participation. ^{Reference Fleming, Fitton and Steiner22,Reference Silva, Vaz and Areias23,Reference Millen, Dempster and Casey34}

Parent–child attachment and relational development

Secure parent–child attachment plays a fundamental role in the emotional development of children with CHD. Emotionally available caregivers help children develop trust, emotional regulation, resilience, and confidence, particularly during periods of hospitalisation and invasive treatment.Reference Lisanti, Vittner, Medoff-Cooper, Fogel, Wernovsky and Butler ^{30 ,} Reference Avedissian, Noureddine and Bulbul ³¹ Repeated medical procedures, prolonged hospital admissions, and separation from familiar environments may disrupt normal developmental experiences and place additional strain on parent–child interactions.Reference Sood, Newburger and Anixt ^{4 ,} Reference Lisanti, Vittner, Medoff-Cooper, Fogel, Wernovsky and Butler ³⁰ Consistent parental presence and active family participation during hospitalisation therefore represent important protective factors that support both attachment and emotional security.Reference Lisanti, Vittner, Medoff-Cooper, Fogel, Wernovsky and Butler ³⁰

Parents are encouraged to provide physical comfort, calm communication, and developmentally appropriate reassurance throughout hospitalisation.Reference Lisanti, Vittner, Medoff-Cooper, Fogel, Wernovsky and Butler ³⁰ These interactions not only reduce distress during medical procedures but also reinforce the child’s sense of safety, trust, and emotional well-being. ^{Reference Sood, Newburger and Anixt4,Reference Lisanti, Vittner, Medoff-Cooper, Fogel, Wernovsky and Butler30}

Parental responses to illness also influence long-term psychosocial development. Following life-threatening events, overprotective parenting is an understandable response.Reference Avedissian, Noureddine and Bulbul ³¹ However, excessive restriction may unintentionally limit autonomy, social confidence, and the development of age-appropriate independence. ^{Reference Rassart, Luyckx, Apers, Goossens and Moons17,Reference Sable, Foster and Uzark19,Reference Avedissian, Noureddine and Bulbul31} Supporting families to balance protection with gradually increasing autonomy should therefore be considered an important component of paediatric cardiac care. ^{15,Reference Sable, Foster and Uzark19–Reference Moons, Pinxten and Dedroog21}

Neurodevelopmental outcomes are increasingly recognised as major determinants of long-term quality of life in children with complex CHD. ^{Reference Marino, Lipkin and Newburger3,Reference Sood, Newburger and Anixt4} Difficulties involving attention, executive functioning, language, emotional regulation, and academic performance are well documented and may reflect the combined effects of altered fetal and perioperative cerebral development, cardiopulmonary bypass, genetic factors, and prolonged hospitalisation. ^{Reference Marino, Lipkin and Newburger3,Reference Sood, Newburger and Anixt4} Early developmental surveillance, neuropsychological assessment, and family centred intervention facilitate earlier identification of children at risk and may improve developmental, educational, and psychosocial outcomes. ^{Reference Marino, Lipkin and Newburger3,Reference Sood, Newburger and Anixt4,15}

Sibling relationships also warrant greater recognition within paediatric cardiac care. Brothers and sisters frequently experience anxiety, loneliness, altered family roles, reduced parental attention, and impaired psychosocial well-being. ^{Reference Parker, Houghton, Bichard and McKeever12,Reference Moon, Jung and Lee13,Reference Schamong, Liebermann-Jordanidis, Brockmeier, Sticker and Kalbe32,Reference Ravindran and Rempel33} Despite these challenges, siblings often receive relatively little attention within routine psychosocial assessment. Greater inclusion of siblings in family support programmes may strengthen adaptation across the wider family system. ^{Reference Parker, Houghton, Bichard and McKeever12,Reference Moon, Jung and Lee13,Reference Schamong, Liebermann-Jordanidis, Brockmeier, Sticker and Kalbe32}

Family dynamics, resilience, and psychosocial adaptation

CHD affects the entire family system, influencing communication, parental roles, daily routines, education, employment, and future planning. ^{Reference Wei, Roscigno, Hanson and Swanson6–Reference Lumsden, Smith and Wittkowski11} Although many families experience considerable emotional strain following diagnosis and throughout their child’s clinical journey, others demonstrate positive adaptation over time through effective coping, supportive family relationships, and collaborative partnerships with healthcare professionals. ^{Reference Wei, Roscigno, Hanson and Swanson6,Reference Jackson, Frydenberg, Liang, Higgins and Murphy10,Reference Lumsden, Smith and Wittkowski11}

Family resilience is shaped by multiple interacting factors. Open communication, supportive relationships, confidence in the healthcare team, and access to psychological and social support all contribute to a family’s capacity to adapt to the challenges of CHD. ^{Reference Wei, Roscigno, Hanson and Swanson6,Reference Woolf-King, Anger, Arnold, Weiss and Teitel7,Reference Jackson, Frydenberg, Liang, Higgins and Murphy10,Reference Lisanti26} Financial stability and the ability to mobilise internal and external family resources also influence resilience, particularly during periods of repeated hospitalisation or ongoing treatment. ^{Reference Connor, Kline, Mott, Harris and Jenkins9,Reference Jackson, Frydenberg, Liang, Higgins and Murphy10} Conversely, socio-economic disadvantage, travel costs, employment disruption, and limited access to psychosocial services may substantially increase caregiver stress and reduce adaptive capacity. ^{Reference Connor, Kline, Mott, Harris and Jenkins9,Reference Jackson, Frydenberg, Liang, Higgins and Murphy10}

Adaptation should therefore be viewed as a dynamic process rather than a fixed outcome. Families may move between periods of stability and increased vulnerability as children undergo surgery, experience complications, enter school, transition to adult care, or face advanced therapies such as ventricular assist device support or heart transplantation. ^{Reference Wei, Roscigno, Hanson and Swanson6,Reference Jackson, Frydenberg, Liang, Higgins and Murphy10,Reference Lumsden, Smith and Wittkowski11,Reference Sable, Foster and Uzark19–Reference Moons, Pinxten and Dedroog21,Reference Rea, McCormick, Lim and Cousino38} Recognising these evolving psychosocial needs supports timely intervention and reinforces the importance of longitudinal, relationship-centred support throughout childhood and adolescence. ^{15,Reference Beach and Inui16,Reference Kovacs, Brouillette and Ibeziako36} The major psychosocial and relational challenges associated with CHD, together with their potential protective factors, are summarised in Table 2.

Table 2.

Psychosocial and relational dimensions of congenital heart disease

Table 2. Long description

A table with 8 rows and 4 columns. The columns are labeled Domain, Child impact, Parent/family impact, and Potential protective factors. The table describes various domains such as Repeated hospitalization and cardiac interventions, Neurodevelopmental vulnerability, Exercise participation, Adolescence and transition to adult care, Lifelong follow-up and advanced CHD, Visible differences and surgical scarring, Financial and social burden, and Belonging and peer relationships. Each row details the impact on children, the impact on parents/family, and potential protective factors for each domain. For example, under Repeated hospitalization and cardiac interventions, the child impact includes procedural anxiety, school absence, disruption of normal routines, and reduced social participation, while the parent/family impact includes caregiver fatigue, sleep disruption, emotional distress, and family disruption. Potential protective factors include family-centred rounds, parental presence, psychosocial screening, and psychological support.

Relationship-centred care: expanding the scope of psychosocial care

Relationship-centred care is proposed as a complementary extension of family-centred care, which recognises parents and caregivers as essential partners in clinical decision-making and the care of children with chronic illness. ^{Reference Kuo, Houtrow, Arango, Kuhlthau, Simmons and Neff14–Reference Beach and Inui16} Relationship-Centered Care builds on these principles by recognising that children with congenital heart disease (CHD) develop within a wider network of relationships—including siblings, grandparents and extended family, peers, schools, healthcare professionals, coaches, mentors, and later intimate partners—that influence emotional wellbeing, resilience, identity, autonomy, educational participation, and social belonging. ^{Reference Beach and Inui16–Reference Silva, Vaz and Areias23,Reference Ravindran and Rempel33–Reference Bratt, Järvholm, Ekman-Joelsson, Mattson and Mellander35}

This broader perspective is particularly relevant in CHD, where repeated hospitalisations, developmental challenges, lifelong surveillance, visible surgical scars, exercise restrictions, and uncertainty regarding future interventions influence not only physical health but also psychosocial development across multiple social settings. ^{Reference Marino, Lipkin and Newburger3,Reference Sood, Newburger and Anixt4,Reference Rassart, Luyckx, Apers, Goossens and Moons17–Reference Silva, Vaz and Areias23}

Rather than focusing exclusively on medical management, relationship-centred care emphasises coordinated psychosocial, developmental, educational, and relational support throughout childhood and adolescence. It provides a conceptual framework that encourages collaboration across healthcare, educational, and community settings to promote resilience, participation, belonging, and quality of life. ^{15,Reference Beach and Inui16,Reference Fleming, Fitton and Steiner22,Reference Kovacs, Brouillette and Ibeziako36}

Ultimately, relationship-centred care shifts the focus from survival alone to long-term adaptation, recognising that outcomes are shaped not only by medical treatment but also by the quality of the relationships surrounding the child. It therefore complements family-centred care by integrating medical, developmental, psychological, educational, and social support across the lifespan (Figure 1).Reference Beach and Inui ¹⁶

The role of the healthcare team

Healthcare professionals play a central role in shaping the experiences of children with CHD and their families. Beyond providing medical expertise, clinicians influence how families understand the diagnosis, cope with uncertainty, build trust, and navigate lifelong care. ^{Reference Wei, Roscigno, Hanson and Swanson6,Reference Beach and Inui16,Reference Kovacs, Brouillette and Ibeziako36} Clear, compassionate communication strengthens collaborative decision-making and may reduce anxiety, whereas inconsistent or overly technical communication can increase distress and feelings of helplessness. ^{Reference Wei, Roscigno, Hanson and Swanson6,Reference Beach and Inui16}

Psychosocial care should be integrated into routine paediatric cardiology rather than viewed as an adjunct to medical treatment. ^{15,Reference Kovacs, Brouillette and Ibeziako36} Regular assessment of parental mental health may facilitate earlier identification of anxiety, depression, and psychological distress among caregivers. ^{Reference Wei, Roscigno, Hanson and Swanson6,Reference Woolf-King, Anger, Arnold, Weiss and Teitel7,Reference Kasparian, Kan, Sood, Wray, Pincus and Newburger25} Children should also undergo longitudinal assessment of emotional well-being and neurodevelopment, with developmental surveillance and neuropsychological evaluation where appropriate. ^{Reference Marino, Lipkin and Newburger3,Reference Sood, Newburger and Anixt4} Educational participation and school functioning should be reviewed throughout childhood to identify learning needs and support appropriate school liaison.Reference Fleming, Fitton and Steiner ²² Routine psychosocial screening of children and families can further help identify those requiring timely referral to psychology, social work, and other support services. ^{15 ,} Reference Kovacs, Brouillette and Ibeziako ³⁶

Optimal care requires collaboration between paediatric cardiologists, cardiac surgeons, specialist nurses, psychologists, social workers, developmental paediatricians, therapists, educators, and primary care providers. ^{15 ,} Reference Beach and Inui ^{16 ,} Reference Kovacs, Brouillette and Ibeziako ³⁶ Coordinated multidisciplinary care enables medical, developmental, educational, and psychosocial needs to be addressed in parallel throughout childhood and adolescence. ^{15 ,} Reference Beach and Inui ^{16 ,} Reference Fleming, Fitton and Steiner ²²

Healthcare professionals themselves may also experience compassion fatigue, burnout, and moral distress when caring for children with complex CHD.Reference van Mol, Kompanje, Benoit, Bakker and Nijkamp ³⁷ Supporting staff well-being is therefore an important component of sustaining compassionate, high-quality paediatric cardiac care.

Implementing relationship-centered care

Relationship-centred care has practical implications for the organisation and delivery of paediatric cardiology services. Although resources vary between healthcare systems, many aspects of this approach can be incorporated into existing models of care through multidisciplinary collaboration and earlier recognition of psychosocial needs. Practical components include routine psychosocial screening and referral where appropriate ^{15,Reference Kovacs, Brouillette and Ibeziako36} , developmental surveillance and neuropsychological assessment ^{Reference Marino, Lipkin and Newburger3,Reference Sood, Newburger and Anixt4} , school liaison ^{Reference Fleming, Fitton and Steiner22}, structured transition planning ^{Reference Sable, Foster and Uzark19–Reference Moons, Pinxten and Dedroog21,Reference John, Jackson and Moons29} , exercise counselling, and peer support ^{Reference Knowles, Day, Wade, Bull, Wren and Dezateux18,Reference Silva, Vaz and Areias23,Reference Millen, Dempster and Casey34} (Table 3).

Implementation should be pragmatic and tailored to local resources. Relationship-centred care does not necessarily require new standalone services; many components can be delivered through existing multidisciplinary teams while strengthening partnerships with educational and community services. ^{15 ,} Reference Beach and Inui ^{16 ,} Reference Kovacs, Brouillette and Ibeziako ³⁶ Future evaluation should extend beyond traditional medical outcomes to include psychosocial well-being, transition readiness, treatment adherence, patient-reported quality of life, family functioning, and social participation. ^{Reference Wei, Roscigno, Hanson and Swanson6,Reference Jackson, Frydenberg, Liang, Higgins and Murphy10,Reference Knowles, Day, Wade, Bull, Wren and Dezateux18,Reference Moons, Pinxten and Dedroog21,Reference Kovacs, Brouillette and Ibeziako36} Establishing the effectiveness, feasibility, and cost-effectiveness of relationship-centred care will be important to support its wider integration into contemporary paediatric cardiology practice. ^{Reference Beach and Inui16,Reference Kovacs, Brouillette and Ibeziako36}