Having a child with a critical congenital heart defect (CCHD) is recognized as an extremely distressing experience for parents [1
], inevitably leading to vast supportive care needs that begin at the child’s congenital heart defect (CHD) diagnosis and continue through surgery and childhood [2
]. CHDs are the most common congenital abnormality among infants, with the global yearly prevalence estimated at about 1% [4
]. Of these, 25% are predicted to have CCHD, which is a life-threatening condition requiring urgent heart surgery and intensive care at birth, followed by life-long medical follow-ups and often further surgery [5
]. It is estimated that up to 30% of parents of children with CCHD develop post-traumatic stress disorder and 25–50% develop depression or anxiety [6
]. This is problematic because a parent’s ability to care for their child diminishes if their own needs are not met [2
]. Unfortunately, these parents continue to be at a higher risk of developing mental health problems due to a lack of social support, information, and mental support [2
Transitions in hospital environments (e.g., from the pediatric intensive care unit (PICU) to a clinical ward) are known as challenging experiences for parents of critically ill children [8
], including those with CCHD [9
]. Under these circumstances, insecurity, fear, stress, and anxiety are reported to be experienced by parents due to, for example, the unfamiliarity and uncertainty of the new environments. Subsequently, these may result in various changes, impacting parental and child health and well-being [8
Due to the highly specialized hospital treatments complex pediatric heart surgeries require, this medical service is not always available “at home”. In these instances, children may be referred overseas, where they receive state-funded cross-border care [11
]. These unprecedented circumstances inevitably introduce heightened stress, and unique challenges to already vulnerable families. Currently, our understanding of state-funded cross-border care for children with CCHD and their families is limited. Given this dearth of knowledge, using a qualitative approach to the parental transition experience, is seen as a prerequisite for understanding the supportive care needs of these families. State-funded cross-border, or the transfer of patients between two health care systems where funding agreements are in place, is different from medical tourism, which implies patients traveling abroad to receive “out-of-pocket and third-party payments medical treatments” [13
]. Both cross-border care and medical tourism involve the movement of patients and families between countries, cultures, and health care systems. This inevitably creates added stress, challenges, and burden. Even so, the contexts are very different, for example, the severity and acuity of newborn’s CCHD needing cross-border care is inevitably different from medical tourism.
Scarce literature exists regarding child medical tourism [14
]. Only three studies were found looking at parents’ experiences [16
], all focusing on older children (not newborns) receiving cancer or blood-related treatments in the United States. Two include Spanish-speaking parents from low-income countries [16
] and one English-speaking parents from a high-income country [18
]. Overall, these studies showed that transitions into new cultural environments create stress and extra burdens on families [16
According to Meleis’s transitions theory [19
], transition is the movement from one life condition to another and involves an adaption to change. Transitions can be triggered by events that require geographical changes (e.g., relocation), where sudden and rapid adjustments to different environments are needed. This inadvertently increases individuals’ stress and depletes and disrupts their usual sources of support. Therefore, creating an imbalance which can affect individual’s vulnerability risk, health, and wellbeing [19
]. The transitions experienced by parents of newborn children with CCHD needing heart surgery abroad, surely create an imbalance. Understanding these experiences is thus an important first step in developing quality health care for these families. Therefore, the aim of this study was to elucidate and describe parents’ transition experiences of having a newborn suffering from a heart defect and having to undergo heart surgery abroad.
This study elicited parents’ experiences of their child’s CHD diagnosis, heart surgery abroad, and journey beyond. The overarching theme, living with the memories, highlighted the superimposition of this stressful live event on the expected transition to parenthood, where parents’ vivid memories still impacted their lives up to five years later. The most concerning finding was parents’ negative memories of the transition back home and their descriptions of roadblocks to recovery that followed.
According to Meleis’s transitions theory [19
], the constructs that define transitions are its nature (e.g., critical event), conditions (i.e., facilitators and inhibitors), and patterns of response (e.g., indicators of a healthy transition). Furthermore, all transitions are believed to build on universal commonalities, where disconnectedness is seen as the most pervasive one [19
A parental transition triggered by child’s CCHD and need for heart surgery abroad has not been previously documented. However, other types of parental transitions focusing on child medical tourism [16
] and hospitalizations of critically ill children [8
] have been studied. Concurrently, our findings support the diverse and universal nature of transition experiences [19
], although all parents experienced situational transitions, its nature—complexity, suddenness, degree of stress, and social support required —was particularly different. Thus, the uniqueness of our findings relates to the transitional conditions experienced by our parents.
Our findings showed both facilitators and inhibitors in parents’ environmental conditions. Connectivity represented itself both as a facilitator (e.g., in networks of health professionals and peer-groups) and an inhibitor (e.g., separation from child’s siblings). Separation or feeling separated is associated with personal, familial, socio-cultural, and geographical factors. However, separation from family and home life is hard on individuals in hospital settings and can lead to vulnerability, loneliness, and dependency [23
The distance between home and hospital created a feeling of disconnection in parents in our study. Concurrently, others have shown that separation caused by geographical distance can negatively impact family relationships during child’s hospitalization. Specifically, parents’ likelihood of relationship difficulties with other family members tend to grow as the distance between hospital and home increases [24
]. In our study, several parents described relationship tensions during their stay in Sweden, with some attributing this tension to the distance from home. Further, the separation from the child’s siblings at home was also hard on parents, and aligns with the findings of others [16
]. Parents used modern technology (e.g., Facebook, Skype, Facetime) to connect with the left-behind siblings. This seemed however disjointed to their feeling of disconnectedness due to the physical distance. Another contributing factor may be siblings age, as all were relatively young, which might have made the utilization of technology perplexing.
In hospital settings, separation from home triggers a need for comfort and support that can be found through cultural connection. This includes seeking familiarity in terms of language and food, in addition to developing a sense of belonging in terms of social support networks [23
]. Consistent with a meta-analysis and systematic reviews of parental coping with their child’s CHD [3
], our participants used various coping strategies from surgery to childhood. However, their means of becoming culturally connected while abroad—particularly in the security, safety, and trust they placed in countrymen—is unique to our findings. Here, child’s grandparents and the health professionals working at the hospital abroad were of significance in creating this cultural connection.
Similar to that in other studies [3
], grandparents were a significant source of support to parents in our study. Grandparents were a cornerstone in their habitat building, either caring for the child’s siblings at home or traveling with them abroad, thus creating familiarity through food and language. In hospital settings, such comfort can counterbalance negative emotions associated with being away from home and home life [23
]. Importantly, the findings showed that the support provided by countrymen working as health professionals at the hospital abroad, created unique networks and relationships essential to the parents. These professionals provided parents with services ranging from direct medical care to assistance with practical matters, all seemingly done voluntarily. The shared culture and language appear to have created a feeling of safety, understanding, and familiarity, and a sense of belonging. Cultural competence in health care involves streamlining care and facilitating communication [26
]. This could be done by matching patients and providers based on their cultural similarities [27
]. Our results suggest that cultural competence in health care can be achieved by providing families traveling abroad with access to the medical care of health professionals who are fellow countrymen.
A key element facilitating healthy parental transitions from the PICU to a clinical ward is effective communication and information flow [8
]. Furthermore, clarity in patient-provider communication is needed for facilitating and managing transitions, also imperative to securing quality care [29
]. Our findings show that parents’ experienced communication challenges with health professionals while abroad, which amplified the imbalance of social capitals inherent in the client-providers encounters. The clearest communicational challenges reported related to language and other cultural barriers. Similar findings are reported in child medical tourism [16
]. Although no participant asked for medical translator, they sought assistance from their fellow countrymen (i.e., family and health professionals) when needed.
Language discrepancies between clients and health clinicians contribute to communication errors, especially if both speak a second language [30
]. Furthermore, within these language-discrepant medical communication settings, individuals’ distress and vulnerabilities are likely to increase [30
]. This is problematic and implies that assessing and anticipating families’ need for support prior to traveling (e.g., a medical translator) is necessary, as has been suggested by others [14
]. It is therefore surprising that our participants and apparent health professionals did not anticipate this, even though both parties had to communicate in a second language (i.e., English).
The transitions experienced by our parents following their child’s CHD diagnosis and cardiac surgery were extremely stressful. In a brief period, parents transitioned from expecting to go home with a healthy baby to having a critically ill newborn needing cardiac surgery abroad. Some even had to make this journey abroad three times. Parents’ descriptions of their aftershock, unmet needs, and short- and long-term health problems following their arrival back home, concur with the pediatric cardiac literature [6
]. Similar findings are however not reported in the child medical tourism literature [16
Personal growth and empowerment are a positive outcome of transitions [19
], described by few parents in our study. This growth was best exemplified in the compassion and empathy parents showed toward their peers in similar situations, and in parents’ efforts to reform the current health care system. Concurrently, in a qualitative study, looking at parents mostly from low-income countries, majority of parents experienced personal growth (e.g., greater compassion for others) as a result of coming to the United States to seek medical treatment for their child [16
]. In addition, a quantitative study [33
] reported nearly 40% of parents experienced posttraumatic growth after their child’s admission to PICU. The different contexts and samples used in these studies compared to ours, may explain the inconsistency of experienced personal growth by our parents. Even so, all parents in our study described a path to recovery as they tried to fit the transition into their life story in a meaningful way.
Our findings suggest an urgent need for follow-up care and support for this population, but currently, no such support is provided by health professionals in either Iceland or Sweden. A significant feature of transitional care is comprehensive and continued follow-up care for patients and families [19
]. This is in line with pediatric cardiology guidelines [34
] which recommend that a multidisciplinary health team supports children with CHD and their parents throughout their whole journey, including with follow-up care. Systematic reviews examining parents after their child’s PICU admission [35
] and meta-analyses examining adult ICU survivors and their relatives [36
] have indicated that follow-up appointments can improve mental health for these groups. These findings stress the urgency of offering the same follow-up service for families of children with CHD, particularly for at-risk groups such as those traveling abroad.
eHealth is considered a promising aid to lower psychiatric morbidity in families of children with CHD [34
] and is particularly relevant for the population of the current study. This mode of health care creates opportunities for interactive communication between all stakeholders, allowing health care teams at home and abroad to collaborate more easily with parents as they transition between systems. Furthermore, via website apps, psychological follow-up care could, for example, permit parents to make virtual revisits to the hospital abroad.
This study has both limitations and strengths for consideration. Of the seven mothers and five fathers who participated, only eight children with CHD were represented. The range of possible experiences might thus have been restricted because both parents could participate. However, parent couples’ experience of a stressful event often varies greatly [38
]. A written request was sent to 25 parents via e-mail. Fifteen parents replied to the e-mail, but only 12 parents participated in the study. It is unclear whether the 13 parents who did not participate are in some way demographically different from those who did. The nearly equal number of mothers and fathers, and the wide range of sociodemographic characteristics in the participant sample, however, strengthened the study findings. Additionally, the primary categories reappeared in all of the interviews, thus creating a saturation that strengthened the results. The study findings may not be generalized to other populations, but may be transferable to other parents of children with CHD traveling abroad for cardiac surgery. The sample size was relatively small. However, the fact that similar sample sizes have been used in other studies [39
] and the emphasis on richness rather than sample size in content analysis [41
] provides strength to our findings. The trustworthiness of the study findings lies in the methods used and the experience of the three authors. All authors are registered nurses with pediatric clinical experience. The second author (A.S.S.) has extensive experience with pediatric acritical care cardiology and working with parents of children with CCHD. Although all authors are experienced researchers, the second author also has extensive experience in qualitative content analysis methods.