Sample
A total of 21 parents (7 fathers and 14 mothers) participated, representing the H2H transition of 14 children. During 7 interviews, both parents were present, the other 7 were conducted only with the mother. All parents were together and – all families but one – lived together at home. Four families made the transition home via a specialized transitional care unit and 1 patient was first transferred to a nursing home before eventually transitioning home. All other cases returned home directly from the hospital, either from the paediatric intensive care unit or a general paediatric ward. The duration of admission before H2H transition varied between 5 weeks and 2 years. Two parent couples withdrew from the study, because the memories evoked too many emotions. Table 1 summarizes the demographics of the study population. Table 2 provides clinical data of the CMC participating in this study.
Main themes
The process of inductive thematic analysis resulted in eight overarching themes regarding H2H transition for CMC: 1) autonomy, 2) division of roles, 3) family emotions, 4) impact on family life, 5) communication, 6) coordination of care, 7) support system, 8) adaptation. Each theme is discussed below. An additional file shows a more detailed overview of the eight themes [see Table 3, Additional file 1], in which citations from parents are used to illuminate their experiences.
1. Autonomy
Many parents felt helpless during their time in the hospital. Having to allow other people to take care of their child was perceived as hard. When they were finally able to participate in the care of their child, some parents felt that they could take back control. Life in the hospital was extremely disruptive and involved a lot of waiting. Waiting for professionals to visit the child – and not knowing when they would come – or waiting for home equipment to be ready before they could be discharged. Parents lacked structure in their days. They felt as if their lives had been taken over by the rhythm of the hospital. Once home their sense of autonomy was not fully restored. Most families were supported by home care nurses, at least part of the time. As much as this help was needed and appreciated, it also led to a loss of privacy and private time for the family.
2. Division of tasks and roles
Taking care of CMC is teamwork and demands a clear division of tasks between parents and professionals. Many parents stressed the importance of involving and listening to them from the start and setting expectations about care delivery to avoid misunderstandings. Parents were generally eager to participate in their child’s care, but did not want this to be taken for granted by professionals. Simply being asked to take on the challenging caregiving role, could prevent negative feelings such as frustration and anger. Many parents indicated that a special parents-professional relationship developed over time, which created a sense of familiarity and trust. On a personal level, parents struggled with fulfilling a dual role: being both parent and caregiver. It was challenging to separate the two when parents felt compelled to take on a nursing role when they just wanted to be a parent to their child. All parents took on roles differently, as character differences between parents are magnified by the extreme circumstances.
3. Family emotions
Having a CMC and dealing with everything related to CMC care, evoked all kinds of emotions in parents. For most parents, their child was unexpectedly seriously ill, and a period of respite was suggested by them. This could allow them to catch their breath before being asked to take on an active caregiving role. To deal with all their negative and anxious feelings, parents emphasized the importance of a positive attitude of professionals, which gave them hope. Staying in the hospital for a long time, especially in the ICU, was traumatic. It was upsetting for parents to talk about all the grief they had experienced from other families in the ward. Several parents struggled with feelings of guilt, for example when their child survived, but other children in the ward did not, or when they had the feeling that they were unjustly occupying an ICU bed, awaiting the H2H transition. When they were finally able to go home as a family, parents encountered new obstacles, often related to arranging home care and medical equipment, or coping with an environment that underestimated their complex situation. These disappointing experiences sometimes resulted in a combative attitude and a strong desire to improve the system. At the same time, many parents trivialized the severity of their situation as a coping mechanism. Parents struggled with recurrent feelings of bereavement. Many of them had to deal with the near death of their child. After an initial relief when the child survived, continuing feelings of loss arose as well: loss of something that could have been, sadness when confronted with their child’s limitations. Ultimately accepting their new situation was an important part of the emotional process that the parents went through.
4. Impact on family life
Living with a CMC has a major impact on family life. In order to meet the fulltime care for their child, parents identified other aspects of their lives that also needed attention. For example, the importance of self-care was emphasized. Occasionally leaving the ward during the hospital stay of their child was necessary to cope with the intensity of their situation. Many parents wanted to lead a life of their own and to feel part of society. Being surrounded by people other than their immediate family, for example at work, strengthened their sense of identity. It was however a challenge for parents to balance their career and care role. Work made them feel happy and provided structure. At the same time, demanding jobs could not always be combined with CMC care, increasing parental stress and causing many parents to quit their jobs. Parents felt a strong need for family cohesion. During long hospitalizations, it was difficult for them to split up the family and for other relatives to not see each other for long periods of time. It was challenging for parents to divide their attention between the sick child and other siblings, whose daily rhythm was repeatedly disrupted as well. Ongoing care for CMC changed relationships, both between parents – who felt more like a manager than a partner – and between the parents and those around them. Friends and colleagues who struggled to understand their situation made parents feel disconnected, resulting in social isolation.
5. Communication
Communication is an important aspect of CMC care, and specific elements can make a big difference in parents’ perception of H2H transition. For example, many parents emphasized the importance of clear and personalized information about their child’s medical condition, without the use of medical jargon or information overload. In addition, one mother suggested that less assertive parents who were less likely to verbally express themselves, should not be overlooked. Openness about what to expect, both about their child’s prognosis and about their own future, was also mentioned as important. When parental expectations were not properly managed, it could lead to misconceptions and unexpected setbacks. During conversations about their child’s care and future prospects, parents wanted to be seen as equal partners. If the situation allowed it, they appreciated being informed by professionals before changing the treatment plan. Maintaining communication with their environment could be an additional stressor for parents. Some suggestions were made by parents to alleviate this burden, such as writing a blog or a regular update through a designated friend or family member.
6. Coordination of care
Coordinating care for CMC was perceived as difficult, especially after hospital discharge. Assistance from a case manager to navigate the range of institutions parents had to deal with, was found to be helpful. Furthermore, an overview of available services was suggested as a useful, practical tool to direct parents in the right direction. Another important aspect of care coordination was continuity of care. Seeing familiar faces in case of a readmission was reassuring and gave them a sense of calm. Some parents mentioned a lack of access to medical information across healthcare institutions. This resulted in both explaining their specific situation over and over, but more importantly, could lead to dangerous situations when healthcare professionals did not have access to their child’s medical record in an acute situation. Parents expected a certain level of expertise from professionals when they needed help coordinating different aspects of CMC care, unfortunately this was not always the case. While parents understood that the magnitude and complexity of healthcare initiatives could be overwhelming for professionals, as it was for them, they were often disappointed by a lack of knowledge and collaboration between different healthcare institutions.
7. Support system
In order to bare the challenging CMC care both during hospital stay and at home, parents mentioned the importance of a solid support system. Most parents were offered psychological support during a lengthy hospital admission. Although this was appreciated, a number of parents also indicated that timing is relevant since they were not open to it during the hectic first period. Some of them picked up on this later, others found emotional support elsewhere. For example, by talking to family and friends. In addition, peer support through the experiences from other CMC families provided comfort and a sense of familiarity. Connecting with other families facing similar challenges instilled their confidence. Tips and tricks from other CMC families were perceived as useful as well, as their experiences provided them with more ‘out of the box’ solutions to everyday problems. The use of social media could be an accessible way of connecting to other families. Some parents found support in their religion. On a more practical level, most parents received support from home nurses on a daily or weekly basis. They helped parents improve their nursing skills and took away some of the responsibility associated with providing CMC care at home. Most parents did not ask their friends and family to perform specific nursing tasks, preferring that their child had a normal relationship with their relatives. On the other hand, help with household chores or taking care of siblings during their absence was highly appreciated. Finally, parents emphasized the added value of respite care and school, which could ease the constant burden on the family and gave parents time to spend with siblings or themselves.
8. Adaptation
The H2H transition for CMC was often perceived as a lengthy process that families had to go through, ultimately resulting in adapting to new routines. Apart from time and perseverance, that were needed to adapt, parents also mentioned a number of practical steps that helped them do so. For example, they emphasized the added value of practicing before discharge. By taking full responsibility for their child’s care, while having the safe hospital environment to fall back on when needed, they realized what they were capable of, but also became aware early on of things they did not know yet. In addition, parents suggested a step-by-step care plan and a practical discharge checklist for discharge. Creating a contingency plan to be used in an emergency at home, gave them the confidence they needed to take their child home. Apart from taking these practical steps, parents also went through an emotional process. By constantly dealing with uncertainty, which could be challenging at times but also strengthened their flexibility and self-efficacy, parents eventually became expert caregivers.
Table 1. Family demographics
Participants (n, %)
- Total cohort of parents
- Male
- Female
|
21 (100)
7 (33.3)
14 (66.7)
|
Mean age parents (y, range)
|
38.2 (28-50)
40.0 (34-50)
37.4 (28-42)
|
Nationality (n, %)
|
18 (85.7)
2 (9.5)
1 (4.8)
|
Highest level of education parents (n, %)
- Secondary school
- Intermediate vocational education
- Higher vocational education
- University level
|
2 (9.5)
4 (19.1)
11 (52.3)
4 (19.1)
|
Children with Medical Complexity (CMC) (n, %)
|
14 (100)
7 (50)
7 (50)
|
Mean age CMC (y, range)
|
4.2 (6m-10y)
4.4 (1y-7y)
3.9 (6m-10y)
|
Number of siblings (n, %)
|
6 (42.9)
2 (14.3)
4 (28.6)
1 (7.1)
1 (7.1)
|
H2H transition mode (n, %)
- From hospital to home
- Via transitional care unit
- Via nursing home
|
9 (64.3)
4 (28.6)
1 (7.1)
|
Home care (n, %)
|
10 (71.4)
4 (28.6)
|
Table 2. Clinical data of CMC participating in this study
Interview no.
|
Congenital or acquired disease
|
Clinical Presentation and diagnosis (if known)
|
Technological support at discharge
|
CMC Score*
|
1 (A)
|
Congenital
|
Suspected genetic syndrome (global developmental delay, microcephaly, epilepsy, pulmonary hypertension, mono-kidney)
|
Percutaneous endoscopic gastrostomy tube feeding
|
4
|
2 (B)
|
Congenital
|
Deletion of chromosome 8 and duplication of chromosome 7 (global developmental delay, congenital pelvis abnormality with micturition and defecation problems, pulmonary hypertension)
|
Pulse oximeter, intestinal washing, percutaneous endoscopic gastrostomy tube feeding
|
4
|
3 (C)
|
Acquired
|
Progressive intellectual and neurologic deterioration of unknown cause
|
Tracheostomy, 24/7 invasive mechanical ventilation
|
4
|
4 (D)
|
Congenital and acquired
|
Congenital arthrogryposis multiplex and acquired brain injury
|
percutaneous endoscopic gastrostomy, tracheal tube, night time mechanical ventilation
|
4
|
5 (E)
|
Congenital
|
Down syndrome (tracheomalacia of unknown cause, sleep apnea)
|
Non-invasive ventilation, pulse oximeter
|
4
|
6 (F)
|
Congenital
|
SNC2A mutation with severe developmental delay and epilepsy
|
Nasogastric tube feeding, oxygen
|
4
|
7 (G)
|
Congenital
|
Partial duplication chromosome 9q, deletion chromosome 7b. Marfan phenotype. Multiple dysmorphies (micrognathia, frontal bossing, macrodactyly). Digestive tract varices caused by portal hypertension due to vena porta thrombosis.
|
Nasogastric tube feeding, pulse oximeter
|
4
|
8 (H)
|
Acquired
|
Acute flaccid myelitis at the age of 7 years, due to an Enterovirus D68 infection
|
Tracheostomy, 24/7 invasive mechanical ventilation
|
4
|
9 (I)
|
Congenital
|
Gastroschisis requiring multiple surgeries
|
None
|
4
|
10 (J)
|
Congenital
|
Diaphragmatic hernia
|
Tube feeding, oxygen, pulse oximeter
|
4
|
11 (K)
|
Congenital
|
Oesophageal atresia and tracheomalacia of unknown cause
|
Tube feeding, continuous positive airway pressure
|
4
|
12 (L)
|
Congenital
|
Diaphragm paralysis of unknown origin (respiratory failure)
|
Mechanical ventilation, tube feeding,
|
4
|
13 (M)
|
Congenital
|
Spinal Muscular Atrophy with Respiratory Distress type 1
|
Mechanical ventilation on demand, oxygen, tube feeding
|
4
|
14 (N)
|
Congenital
|
VACTERL association: vertebral anomalies/anorectal malformations/cardiovascular anomalies/tracheoesophageal fistula/renal anomalies/limb defects, bronchopulmonary dysplasia, epilepsy
|
Mechanical ventilation, oxygen, tube feeding
|
4
|