Synthesized findings
1.
Parental empowerment: shifting from care recipient to caregiver
Providing care at home comes with a great deal of responsibility. Taking ownership and achieving a level of empowerment was described as a gradual process. Parents must develop their own practical skills as well as go through an emotional transition to gradually accept the responsibility that comes with their new role as caregiver. Building self-confidence and trusting their own instincts were considered important and developed over time. When this increase in confidence was well balanced, parents reported feeling they knew when to seek help as part of proactive care delivery. Mastering certain care tasks was considered a source of pride. The learning process, although despairing at times, increased self-esteem and should be encouraged by professionals as soon as possible. By becoming expert caregivers, some parents also wanted to advocate for other families facing the same problems. In addition, they wanted to help professionals improve the overall care delivery. They felt empowered.
Coordination of care was mentioned to be important throughout the entire transition process, both during admission and at home. Parents appreciated to be actively involved in the planning and coordination of care. The presence of a comprehensive care plan was perceived as a useful tool to support continuity of care, and to communicate well with all the involved health professionals and institutions once home. Parents also valued active follow up by professionals, especially in the first days at home, for example a home visit or a telephone call. The lack of a clear point of contact for questions and the lack of cooperation between the healthcare organizations involved, were mentioned as obstacles in the coordination process. When asked about novel ideas to improve coordination of care, the support of a designated professional to help to coordinate appointments after discharge was considered helpful by parents.
3.
Communication and information
Communication and information were often mentioned by parents as an important aspect of transitional care. They emphasized the importance of receiving comprehensible information in an understandable language avoiding medical jargon. Information inconsistent with the parents’ literacy level negatively impacted their education to become their child’s caregiver. Information had to be reliable as well. If not provided by professionals, parents explained that they would search information elsewhere, i.e. on the internet. During a hospital admission, it was common for parents to have to deal with many different healthcare professionals that could easily contribute to inconsistent information about the care plan. Several parents indicated that they felt safe and in control when information about the child’s condition was customised and tailored to their specific family situation. Not knowing what to expect was challenging, but parents preferred honesty over false hope. This also included clear expectations about inevitable setbacks in the child’s clinical course. Some parents emphasized the need for the online availability of (medical) information upon discharge, in case they lost their discharge papers. The availability of other digital tools such as video chats, health portals, and online educational videos could be helpful tools to stimulate self-education.
Training specific skills resulted in a gradual learning curve for parents, ideally starting early during the hospital stay and extending well after discharge. Parents emphasized the importance of practicing care tasks in a timely manner. They suggested scheduling protected time, separate from routine rounds and without the child present. Parents overcame (technical) difficulties over time and a gradual education process tailored to the patient and family, potentially resulted in safer and more competent care provision at home. Anticipating the practicalities of the post-discharge situation was an important part of the training process. Parents mentioned the positive effect of a dress rehearsal before discharge. Furthermore, they felt more confident if there were clear practical instructions about what measures they could take themselves if their child deteriorated at home. In addition, adequate anticipation on possible equipment related matters, such as professional electrical inspections and equipment installations, was considered important.
5.
Preparation for discharge
According to parents, the moment of discharge was a big event in which several practical matters had to be considered. Not knowing how to organize things at home was a major stressor. The fear of the new situation was greatest for the care that took place at night. Practising this before discharge (rooming-in) was suggested to improve a sense of readiness. Arranging home care equipment was time consuming and equipment at home could be slightly different than the hospital equipment. Parents wished to envision their own homes with all the new equipment in it, to anticipate logistical issues before actual discharge. Some parents pointed out that arranging practicalities, such as proper transportation or the right type of funding, could delay the discharge process due to unforeseen costs and time. Additionally, coming home to medical bills added to the other stressors associated with transitioning home. A timely inventory of financial resources and the organisation of financial support if needed, may relieve this burden for parents.
6.
Access to resources and support system
Arranging good quality home care took time and was difficult for parents. They often did not know how to screen for qualified paid caregivers. Moreover, a scarcity of them led to an increased level of stress, possible costs, and responsibility on the part of parents. Proximity and access to good healthcare facilities proved crucial in case of an emergency. Availability of specific equipment and medication could be a problem, especially in more rural areas where these are not always easily available. Several families reported having financial problems due to loss of work and unforeseen extra costs (frequent transportation, higher energy costs). In severe cases, financial difficulties forced families to prioritize child care over essential household items, such as a refrigerator, heating, and telephone services. Signing up for financial aid programs was a major challenge. In addition, the recruitment, training, and funding of professional caregivers at school was a source of contention between some families and paying agencies. Parents needed a support network to cope with CMC care. Friends and family were a huge help if they were educated and trained in the care. Another important form of support came from other parents in similar situations. Peer support was a source of friendship, support, and helped parents to accept their new reality. Occasionally parents found motivation and meaning in religion.
7.
Emotional experiences: fatigue, fear, isolation, and guilt
Many CMC families experienced emotional difficulties associated with the H2H transition. Parents had to be prepared for some degree of fatigue and possible feelings of disappointment after discharge. Parents often felt overwhelmed and petrified in their first days at home, even though they experienced a sense of empowerment and readiness in the hospital. Reasons for parental anxiety ranged from neglecting other siblings to a fear of losing their child. Experienced parents compared caring for a CMC with being a first-time parent. Everything was new again, which reduced their self-confidence. A common response to fear was control. Parents were constantly alert and questioned decisions of (newly involved) professionals, especially when mistakes had been made. Parents often felt that others in their social network had little understanding of what they were going through, which could lead to fewer social interactions and a sense of isolation. Returning to work could improve social interactions, but at the same time reduce parental health and wellbeing due to sleep deprivation and distraction from the sick child’s needs at home. Some parents expressed feelings of anger, guilt, and self-blame, for example about the child being sick. They worried if they did something wrong. Other parents were angry about the disruption of the life as they planned it, but at the same time felt guilty about feeling angry about it. Finally, the unknown future could be frightening for parents. They expressed concern about their child’s perspective and their ability to cope with a disability. Parents found it difficult to think beyond the present moment and often compared their sick child with healthy peers. Believing their development was lagging, they feared that their child would be stigmatized or bullied in the future.
8.
Parent-professional relationship
The relationship between parents and professionals plays an important role in the provision of care for CMC. Equality reinforced this special relationship. Parents expressed the importance of a personal, but also professional relationship with the involved professionals. Nurses were often the primary source of information and building a trusting relationship with them created a safe environment for parents to learn to care for their child. In addition to their own relationship with (home) professionals, parents indicated that a trusting relationship between the sick child and a home nurse, who noticed the individual needs of the child, was also very valuable. It made it easier for them to hand over some of the responsibility for the child to the professionals. Continuity of care provided a welcome sense of familiarity. A familiar face during follow-up appointments was highly appreciated by parents. In fact, it helped to distinguish between ‘normal’ symptoms or worsening of the disease and to determine if escalation of medical care was necessary. When they were more experienced, parents wanted recognition for their knowledge and acquired skills and to be part of the decision-making process. They sometimes felt that they could take better care of their child than the home nurse. Repeated discharge ‘tests’ and questioning about their child’s condition resulted in frustration, feelings of isolation and stress.
9.
Changing perspective: finding (new) routines and practices
One of the biggest challenges for families during the H2H transition has been to change their perspective and find normalcy as a family (again). Parents needed to adjust to having all the new equipment at home. The equipment also made it extremely difficult for them to leave the house. Although many parents complemented their home nurses, their constant presence resulted in a loss of privacy and control, which was reported to be a source of stress by some families as well. Parents drew strength from old routines and established new ones, which was seen as an important preparation to go home and reduced parental stress. However, the new routines could easily be disrupted, for example by an unforeseen readmission. When parents were able to take their child home, they repeatedly mentioned the advantage of not having to constantly split up the family. Yet, once at home parents have a dual role by being both parent and caregiver. In addition, it proved to be a challenge to divide themselves between the sick child, other siblings, their partner, and a job. The importance of self-care to reduce parental anxiety and stress has been emphasized in several studies. Returning home increased the workload for many parents, resulting in chronic physical and mental fatigue. Some parents said they tried their best, but felt it was never good enough. Adjusting to having a special need child, while at the same time learning new skills, took time. Overall, when finding normalcy at home, many parents noticed a different sense of calm, better sleep, and less stress. They enjoyed resuming normal daily activities with their family.