Table 5.

List of articles and their key outcomes and data relating to the review question

Author, year	Key outcomes	Key points related to review question
Gaskin, 2021 [45]	This study explored parental experiences transitioning from hospital to home with their infant after stage 1 cardiac surgery for complex CHD. Thematic analysis identified evidence of acute stress disorder or post-traumatic stress responses along with anxiety and fear of discharge. Family coping, including anxiety and depression scores, generally improved over time	Parental wellbeing was negatively affected by a CCHD diagnosis with an ongoing significant impact of post-traumatic stress disorder for some individuals. Family functioning was also impacted, affecting family experience, especially with adaptations required when being discharged. Parity, family dynamic, and socioeconomic status influenced transition and parental wellbeing. Practical and financial stressors were identified alongside parental self-care and physical needs
Hill, 2019 [42]	The focus of this study was parent perception of family centred care in the PICU. Thematic analysis revealed that the physical and cultural environment negatively influenced how families experienced their child’s admission to the PICU. The parents appreciated respect for their spiritual needs	Parents experienced stress and uncertainty within the PICU environment. The parents valued positive interactions with healthcare providers, especially clinicians’ clear communication. It was also important that health professionals conveyed details regarding the infant’s care plan using language the parents understood. Having a consistent health care provider was also of value to families
Cantwell-Bartl, 2013 [44]	To evaluate the psychosocial status of mothers and fathers of infants with HLHS while in a tertiary hospital’s PICU. Findings revealed multiple stressors that began from the infant’s diagnosis and endured throughout the management. Post-traumatic stress disorder or acute stress disorder occurred in the majority (83%). There was no gender difference in stress reactions. There were gender differences in both experiences and the methods that assisted and hindered their adaptation process	Parental fear of death and universal distress occurred regardless of diagnosis timing. Participants reported a feeling of loss and marginalisation of their parental role with a lack of infant bonding due to the medicalised PICU environment. The medical equipment used, and the physical state of their infant, also added to their traumatic experiences. Supportive staff or other resources assisted adaptation. Family life and functioning was disrupted with resultant physical responses such as exhaustion. There were stressors from fragile relationships with healthcare providers due to communication breakdowns from insensitive comments, poor interpersonal skills, inadequate information, and low empathy
Lisanti, 2017 [41]	Explored causative factors of maternal stress of infants with complex CHD in the PICU in a large children’s hospital in the northeast mid-Atlantic region. A parental stress model may be used to guide future practices and research. Results confirmed consistency of their parental stress model in the PICU and added an additional theme which was time points of additional stress	Parents of infants younger than 1 year had significantly higher stress than parents of older children. Financial factors were a major feature adding to the stress of families. The experience of extreme stress impacted some participants’ physical health with evidence of flashbacks and symptoms of PTSD. The study also showed differential gender experiences, such as the impact on their parental role. Unexpected medical deteriorations and other uncertain situations also added to parental stress
Bertaud, 2020 [58]	This study undertook semi-structured interviews of HLHS mothers to explore the role of antenatal counselling in how parents make decisions following an antenatal diagnosis of HLHS. The results reported feelings of maternal guilt and the burden of decision-making they felt	Mothers of infants with HLHS responded to the diagnosis with emotional distress. They valued clear communication from healthcare providers with unbiased/neutral positioning. The experience of receiving the diagnosis and resultant decision making was impacted by family ethics/values with a role of the extended family
Ellinger, 2010 [49]	Interview data provided an insight into how parents who choose surgical palliation came to their treatment decisions for their child with HLHS. The key themes observed were trusting modern medicine, wanting to act, feeling like there was no other choice or it was God’s choice	Helpful nurses were key in supporting family decision making alongside their fundamental beliefs and values. The pressure of time constraints and the impact of faith were reported by participants
Vandvik, 2000 [53]	Mothers of HLHS infants were interviewed on how they experienced the decision-making process. Three main factors influenced how parents came to choose comfort care over surgery: more educated; a better childhood environment, and involvement in healthcare services	Mothers experience chaos and shock after receiving a diagnosis of HLHS, with compounded stress from the life-or-death decision they make for their infant. Parental perception of a healthcare provider’s favoured decision can impact the parent experience. The lack of knowledge, short time-frame and emotional distress from diagnosis shock might impact HLHS families’ decisions
Cantwell-Bartl, 2014 [48]	Semi-structured face-to-face interviews explored the psychosocial status of mothers and fathers regarding their response to their infant’s diagnosis of HLHS. The devastation was significant and, universally, with 83% saying that the time during and after the HLHS diagnosis was the most challenging time of their lives. There was an experience of loss, and the pressure of decision making and the impact of healthcare provider communication	The shock and stress were intense, with some having physical symptoms from this. There was evidence of trauma from poor provider communication. There were positive impacts on coping and adaptation from kind and supportive healthcare workers and other families. Rurality had an added impact on family functioning due to the physical distance from the hospital. Adaptation was supported by self-care, religion/spirituality and physical contact with their infant promoting bonding. Interviews outline how parents remembered details about the diagnosis process up to 19 years later
Hwang, 2020 [52]	The fathers' experiences of children with severe congenital heart defects in Korea were studied. In-depth interviews were thematically analysed with three themes emerging: “heart-breaking suffering”; “being a father of a child with CHD”, and “self-control during a great struggle”	The paternal experience of having a child with severe CHD involved great suffering and concern. Culturally these fathers perceived their role as supporting their wife and family, with a focus on how to financially help during the time from diagnosis. Adaptation occurred with self-control, re-framing and focusing on what is important in life
Harvey, 2013 [43]	This study analysed journal entries of mothers’ experiences of infants undergoing complex heart surgery. Thematic analysis identified one major theme of mothering through it all and five additional themes: intense fluctuating emotions; navigating medical information and practices; managing the unknown; facing the fearful potential their baby may die, and finding meaning and spiritual connection	The mothers all had difficult experiences. The unknown was fear-inducing with the responsibility of decision-making an additional stressor. The way information was communicated by healthcare providers was important for parents when navigating the medical world. The uncertainty of their child’s future was a stressor, including the possibility of death. The adaptation experience was supported by family, friends, religion/spirituality, and support people in a similar situation. There was also fear around how family functioning will be impacted
Sood, 2018 [59]	The goal of the study was to examine how mothers and fathers experience the stress of caring for a young child with CHD and utilise supports. The family experience of having a child with CHD was demanding and stressful. There was a gender difference in stress-inducing factors and supports used. Gender differences also occurred in how parents adapt to difficult situations and experiences	Participants reported generalised stress, fear and being overwhelmed with a “rollercoaster” of emotions. There was a fear of the unknown. With mistrust occurring in some, stress can increase from poor communication from providers such as inadequate information or ineffective communication between units and other hospitals. Financial and parenting burdens add to stress for families, which impacts marital functioning. The support they seek out is different and ranged from peer support, financial and work support, and spiritual and religious support
Kim, 2017 [51]	Study of the experiences of fathers of a neonate with CHD in Korea. The study outlined that Korean fathers had unique cultural characteristics comparative to western society. Care could be tailored to specific gender and cultural needs	Shock and misunderstanding when receiving the diagnosis occurred, along with a feeling of despair and lack of control. The emotional response to the diagnosis also encompassed guilt and fear and the burden of holding emotions in for their spouse's benefit. The word choice in the diagnosis discussion was important, with ‘deformity’ as a descriptive term not being well received by a parent. The adaptation response was improved by feelings of gratitude and practically having a plan for work and family functioning
Harris, 2020 [46]	The authors explored parents’ prenatal experience of CHD. The central theme was uncertainty; for instance, in terms of logistics and overall prognosis. Clinicians can assist with the framing of uncertainty at different time points	Timely and clear communication of the CHD diagnosis and plan with appropriate non-verbal communication was an important element of CHD diagnosis and management experiences of parents. Worrying about the unknown and the financial impact was also expressed. Access to support, including support group information, was thought to be valuable in aiding adaptation in the parental journey of having a child with CHD
Carlsson, 2016 [54]	The study explored prenatal parental information needs when a CHD diagnosis is made in the context of limited termination availability in Sweden. Content analysis revealed information was communicated in a complex and overwhelming way. Repeated, objective, clear information in their first language supported by pictures and text was assistive. In contrast, information obtained from the internet was difficult for families to interpret due to the non-specific and variable quality of information available	There was distress, shock, fear, confusion at the time of diagnosis. The feeling of being unprepared and having unanswered questions added to stress and impacted decision-making. Information that is matched to parental needs is integral in how parents adapt and cope with CHD diagnosis. At times parents experienced “insufficient” communication from the care team. There were also unmet needs around information around termination
Carlsson, 2016 [55]	The study explored the preferences and experiences of Swedish immigrants receiving a prenatal diagnosis of CHD. It showed that delay in receiving information increased distress. Participants valued trustworthy information, peer support and respect for their religious position	The way information was delivered was adequate, but more information in the ‘mother tongue’ was requested. The parents reported distress, worry and exhaustion. Support in a culturally appropriate way may be of benefit
Lotto, 2018 [34]	To explore parental decision-making using a comparative-based approach following a diagnosis of a severe congenital anomaly. Parents found navigating the uncertainty and decision-making process difficult. The way uncertainty was managed by the healthcare team influenced coping. Information to assist parents with their decision making was part of negotiating uncertainty. The perceived stigma and impact of religious organisations on termination decisions affected one parent	The parents experienced uncertainty about the diagnosis and severity alongside its prognosis and the decision required for future management. There was a negative impact on wellbeing when long wait times occurred in information delivery. The trust in the healthcare provider and system influenced the way parents navigated and accepted their child’s diagnosis. Being adequately informed empowered families and was associated with confidence in decision-making. This was influenced by education level
Woolf-King, 2018 [60]	Explored the impact of parenting a child with CCHD, including the provider perception. High-stress levels were associated with three-time points: diagnosis; cardiac surgery, and PICU stays. Distance from the providing hospital influenced the way the diagnosis impacted the mental health of families, the relationship with the care team and the total parenting burden (i.e., how many other children are there at home). The healthcare providers were quoted five times: twice regarding their support for increased mental health assistance for families; twice regarding the obvious trauma families experience, and once regarding communication barriers	There was vivid recollection of the grief, distress, shock, and despair experienced following a CCHD diagnosis. The families appreciated respectful dialogue with providers and access to mental health and peer support. The wider family needs also required adapting, which were important to how families coped. Provider information reflected their interpretation of how families’ experienced diagnosis and management and cope overall. One quote discussed communication: “So yes, I definitely have had experiences where the families have heard different messages from different players and felt like they contradicted. Sometimes they don’t contradict it’s just an interpretation that they’re contradictory. And that can escalate anxieties horribly.”
Clark, 1999 [47]	Explored the paternal experience of having an infant diagnosed with severe CHD. The results suggested conflicting reactions with a rollercoaster of emotions from joy to loss of control and fear of death. The fathers experienced a struggle as they tried to appear strong while hiding their intense emotions during the experience	There are unique conflicts with coping with the serious illness of a child for fathers. There is a joy of becoming a father but also the associated sadness, uncertainty and loss with the challenge of adapting to the infant’s vulnerable and fragile state. There was a struggle for the father to remain strong (especially for the mother) with a loss of the sense of control of the situation, amplifying the father's experience
Rempel, 2013 [50]	Reports on the results of a grounded theory study exploring the process of parenting young children who have survived HLHS. The extreme pressure of the situation of having a child with HLHS was central to the results of the study with the adjustment to the inconceivable, infant-attachment, managing the unexpected and new challenges	The emotional response to diagnosis was fear of death, shock, and distress. The process of adaptation to the HLHS diagnosis was managing uncertainty and adjusting expectations. The infant bond was also central and assisted in coping. There was also the balancing act of maintaining family functioning overall. The family support network as a coping strategy was clearly outlined
Thomi, 2019 [57]	Parental experiences from diagnosis of CHD to the first discharge after heart surgery was explored using a constructivist paradigm with inductive thematic analysis. When the CHD diagnosis occurred, the parents experienced shock, fear, uncertainty, and sadness. There also were increased parental demands and hands‐on work. Coping was ill-affected by poor healthcare provider communication and resultant distrust	Families identified times of heightened stress, such as receiving the CHD diagnosis, surgery and their infant’s PICU admission. A fractured relationship with healthcare professionals influenced the parental experience. There was also a focus on how the family and friends are managed as the nuclear family adapts to coping with the CHD diagnosis. The importance of having hope, increased infant bonding, and allowing themselves to feel the emotions assisted coping
Leuthner, 2003 [40]	This study explored the parental impact of an abnormal fetal echocardiogram, including emotions, attitudes, and coping strategies. The mothers voiced intense emotions of grief, guilt, fear, sadness, and hopelessness. Coping was assisted by infant bonding and having a realistic outlook on the future. The fathers were more likely to experience emotions, such as anger and anxiety. Fathers coped by focusing on their spouses and remaining optimistic	There was an overwhelming feeling of fear and grief experienced by parents. The fetal diagnosis affected the parental relationship and view of themselves. Parents felt fear for the future (uncertainty) and loss of control (including decision making). There were differential emotional reactions to the diagnosis and coping strategies adopted by gender. Coping mechanisms included detaching or attaching to the infant, denial, pessimism or optimism, privacy or participation in decision making
Bratt, 2015 [56]	The study explored the parental experience of counselling after a prenatal diagnosis of CHD to identify their needs. Content analysis resulted in three themes. First, parents valued clear information with adjuncts, such as brochures or recommended websites, to assist in understanding. Secondly, continued support with ease of access to providers throughout pregnancy, such as a paediatric specialist nurse, was of value. Peer support with couples who had similar experiences, including via social media, was also important. Thirdly, practical family functioning supports, including economic was a prevalent topic	The parents described the experience as the most stressful one in their life. Information and support needs differed between families. Coping was assisted by maintaining perspective. Families appreciated a detailed explanation regarding the logistics of care and hospital processes

PICU Paediatric Intensive Care Unit, CHD Congenital Heart Disease, CCHD Critical Congenital Heart Disease, HLHS Hypoplastic left heart syndrome, PTSD Post-traumatic Stress Disorder