Introduction
The number of children in chronic need of medical support has steadily increased in recent decades [
1]. This can be attributed to a number of factors including improved outcomes after critical illness, better treatment options and the adaptation of medical devices for home use [
2‐
5]. These chronically supported children, often referred to as children with medical complexity (CMC) [
6], make extensive use of complex medical care through the involvement of many healthcare professionals. Living at home has been associated with several positive psychological, emotional and social benefits for both child and family and it is therefore desirable that children spend as little time as possible in the hospital [
7‐
10]. However, the transition of care from hospital to home (H2H) poses many challenges for families of CMC, whose lives are disrupted by the complexity of the situation [
9,
11,
12]. This often results in prolonged and recurrent hospital admissions and frequent emergency room visits after discharge [
13,
14], impacting healthcare systems worldwide [
3,
15‐
19].
The lack of a care pathway to support CMC families is an important gap in current H2H transition care, as highlighted by Brenner et al. [
20]. To improve on this, their research focused on the core principles for effective and personalized CMC care. To create a tailored care pathway to improve the H2H transition for parents of CMC, involving them in the process is essential to identify their needs and barriers. Several studies have explored the H2H transition for CMC families [
21‐
29], yet a clear overview of parental needs and experiences during this transition is lacking. Therefore, in preparation for this study, we conducted a systematic review to summarize the results of all qualitative studies focusing on H2H transition for CMC families. This resulted in nine overarching themes on which intervention programs could focus: (1) parental empowerment: shifting from care recipient to caregiver (2) coordination of care (3) communication and information (4) training skills (5) preparation for discharge (6) access to resources and support system (7) emotional experiences: fatigue, fear, isolation, and guilt (8) parent-professional relationship and (9) changing perspective: finding new routines.
While this systematic review provided us with valuable insights into the H2H transition as experienced by parents all over the world, the applicability of the results was hampered by the following factors. First, the methodological quality of the included studies varied, which may cloud the interpretation of the results. Second, the number of mothers included in the systematic review was disproportionally high. Finally, national and cultural differences may exist, yet none of the included studies has been conducted in the Netherlands. Knowing whether the same themes apply to the Dutch CMC population may give us insights in the H2H process in the Netherlands where we have recently established the ‘Jeroen Pit Huis’ as Transitional Care Unit to improve H2H care. Therefore, the aim of this study was to gain a deeper understanding of the needs and experiences of Dutch CMC parents on H2H transition and integrate these insights with the results of the literature review into an evidence-based H2H care pathway, tailored to the needs of CMC and their families.
Discussion
The purpose of this phenomenological study was to engage Dutch parents of CMC in a dialogue to gain a deeper understanding of their needs and experiences on the H2H transition. An appropriate understanding of these needs is necessary for healthcare professionals to develop a care pathway, which supports CMC and their parents more needs-oriented and thus facilitate a more sustainable transition home. The needs and experiences of our Dutch CMC families consistently centred around eight themes: (1) autonomy, (2) division of tasks and roles, (3) family emotions, (4) impact on family life, (5) communication, (6) coordination of care, (7) support system and (8) adaptation. Although each of our CMC families is unique, our study shows that a variety of parents share similar H2H transition needs and experiences that can be summarized into these overarching themes. Our study revealed similar themes to previously published studies, which are included in our systematic review [
24,
40,
41]. This not only supports the trustworthiness of our findings, but also strengthens the idea that a H2H transition care pathway should focus not merely on disease-specific medical issues and disease-specific nursing skills, but that a holistic approach that addresses all domains of care is needed. This was repeatedly emphasized by the parents.
Manhas et al. stated the following: ‘
Transition is not simply about moving a child home’ [
40]. This also resonated in our study population, as all parents emphasized that H2H transition was a demanding and continuous process; the initial transition from life as they knew it to an intensive period of being in a hospital, the numerous hospital transfers with their CMC, the multiple readmissions and finally, perhaps most importantly, the shift in parental responsibility and the adaptation to their new role. All parents expressed their willingness to become their child’s caregivers. They reported that the support and trust of healthcare professionals enabled them to build confidence in their own caretaking capabilities. The importance of professional support in learning (nursing) skills was also emphasized by Murdoch et al. [
42]. Over time, however, parents became medical experts on their child’s health. This is important to keep in mind, as it is still common practice for healthcare professionals to take the leading role in decision making, planning or care delivery when a child is readmitted to the hospital [
43]. Acknowledgement of parental expertise during the often frequent readmissions, should be embedded in CMC care.
Parents repeatedly expressed their frustration with the complexity of the regulations surrounding the transition home. While some parents needed more time to feel ready at the time of discharge, the majority expressed the counter-perspective of being able to be discharged earlier if logistical problems had not delayed this. Parents’ frustration with the transition process is well known, with common problems such as difficult financial arrangements, finding suitable home care nurses and dealing with many different agencies without a central point of contact [
44,
45]. The introduction of a case manager, someone who parents can turn to with all their general and logistical questions, could address this issue. Previous research showed that the introduction of this role reduced parents’ time spent coordinating care for their child, ultimately resulting in more quality time with their child and time for self-care [
46].
As our study is the first to focus on the experiences of CMC families on H2H transition in the Netherlands, it adds new information to the existing literature. For example, Berman et al. and Umberger et al. concluded in their studies that parents struggled to be involved in decision making [
41,
47]. In contrast, the parents in our study reported that they felt they were being listened to and that their opinion could influence the care plan. Although speculative, the high valued shared decision making in the Netherlands may have contributed to this different perception. Our research demonstrated, consistent with the previous literature, the importance of an explicit, straightforward exchange of information in a respectful manner [
48,
49].
Parents were grateful when healthcare professionals were aware of their psychological and mental well-being. As one parent put it: “We thought the care would be focused on the medical, the clinical part, but it is much more than that. It is not only taking care of our daughter, but also taking care of us as parents.” This is an important finding, as it highlights the importance of holistic care. More traditional care standards focus mainly on disease management [
50]. Our results indicate that CMC care encompasses many different aspects of care delivery, of which the disease itself—and the medical and nursing skills and tools that accompany that disease, are merely a part of the total care ‘experience’. In addition, many CMC have multiple diagnoses or none at all. In this light, it makes more sense to develop H2H transition care programs for CMC and their families based on their needs, rather than their diseases.
Four of the interviewed parents were very positive about their stay in a transitional care unit, where their expectations regarding the quality and consistency of their training to care for their child was exceeded. Previous studies reported higher readmission rates for children whose parents did not feel prepared to manage their child’s health after discharge [
51]. This supports the fact that family-tailored discharge education is associated with improved patient outcomes and reductions in potentially avoidable healthcare utilization [
52]. The overarching themes will be implemented in the transitional care path that is being carried out at a newly opened transitional care unit in the Netherlands [
53,
54]. Future studies will evaluate this (preliminary) framework and test its accuracy in improving H2H transition care.
One of the main strengths of our study was the participation of a relatively high number of fathers, resulting in a deeper understanding of the phenomenon. Unlike many other studies, where mothers are often the sole representatives of the family [
40,
42,
55‐
57]], fathers were present in half of our interviews. Although we attempted to have a maximum variation sample, including only Dutch-speaking families may have prevented us from exploring the experiences of parents from different backgrounds living in the Netherlands, which could have limited the generalizability of our findings. On the other hand, there were several factors that support the heterogeneity of our participants and strengthen the applicability of our results. First, the parents in our study varied widely in age and level of education. Second, our CMC families were spread across a significant part of the Netherlands, both in rural and urban areas. Third, the participants represented both families who had recently made the transition home and families who had experienced it up to five years ago. Fourth, our study reflects the experience of parents who made the transition home directly from the hospital and of parents who went through a transitional care unit or a nursing home. Fifth, not only the participating parents, but also the CMC, represent a diverse group of children suffering from a wide range of rare diseases.
Due to Covid-19 restrictions, interviews could not be conducted face-to-face, but via video call. Some qualitative methodologists may argue that this approach hinders the connection with participants and could therefore lead to less comprehensive data [
58,
59]. However, this was not our experience. A connection quickly developed between parents and researchers during the video call, which led to a relationship of trust that allowed for the interview to deepen and for the interviewers to respond accurately to non-verbal body language. Moreover, a major advantage of this approach was also the time efficiency. Because CMC parents’ time is often limited, this approach may have increased their willingness to participate. A study by Krouwel et al. showed similar results between face-to-face interviews and video calls, the latter also being more time and cost-effective [
60].
In transcendental phenomenology, the researchers must be vigilant in the self-reflective process of ‘bracketing’, in which they set aside prior knowledge, assumptions, and experiences about the phenomenon during interviews, to avoid biasing their individual subjectivity in data analysis and interpretations [
61]. To minimize this limitation, we decided not to use the preliminary results of our systematic review when conducting the interviews. Instead, we used inductive thematic analysis methods to analyze our interview transcripts. Although we could not completely erase our prior knowledge on the topic, we believe that our methods strengthen the validity of our results.
Conclusion and implications/future perspectives
The H2H needs and experiences reported by the Dutch CMC families in this study align with the results of our systematic review. The H2H transition process is not linear but continuous, and should extend beyond the specific medical needs of the CMC to holistic care for the family as a whole. The overarching care needs and experiences, expressed by all CMC families, regardless of underlying symptoms and diagnoses, inform the H2H care pathway and its future evaluation. Our studies emphasize the necessity to focus on the similarities within CMC families rather than on the specific illness of the child. Additionally, our results underline the value of an interdisciplinary care team partnering with parents towards a safe and sustainable transition home.
Further research is needed to support these findings and achieve changes in public policies. We are taking the first steps in this direction in the recently established the
‘Jeroen Pit Huis’, the first Transitional Care Unit in the Netherlands (
https://hetjeroenpithuis.nl). By collaborating within a national research consortium (
https://www.tcuconsortium.nl), we aim to assess the generalizability of our results to clinical practice and to evaluate the H2H care pathway. Subsequently, the transitional experiences of non-Dutch speaking families need to be examined, because these parents might have different perspectives and therefore advice and support can be tailored to their individual needs as well.
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