DISCUSSION
To our knowledge, we are reporting on the first Canadian data exploring the experiences of FCs of children requiring LTV via tracheostomy transitioned from hospital to home within a newly developed pediatric LTV discharge pathway framework. An emerging model of factors that are reported to impact FC experience with the LTV pathway was developed as an outcome of our study (Figure 2).
Our study provides new insight into the experiences of FCs with their HCPs and information sharing. Several FCs in our study perceived that information sharing by HCPs about their child’s life with LTV was “doom and gloom”. These findings are similar to a recent study of children with medical complexity in which FCs stated that they preferred that broad Advance Care Planning conversations to be holistic and hopeful.21 Additionally, in a study that explored the perspectives of North American directors of pediatric home ventilation programs, the authors found that negative bias about the quality of life and abilities of children with severe disabilities posed a barrier to FC decision making in pursuing LTV and recommended HCP education to reduce this inherent bias.22 FCs in our study reported that they preferred to have conversations with HCPs who were more familiar with the experience of children with LTV at home and who were aware of the range of possibilities for their child’s quality of life, happiness and life at home.
Shared decision making in paediatric health is grounded in a family centred framework. It centres on the FC and HCP partnership and respect for FC goals and guides a collaborative effort to come to an agreement on the child’s plan of care.23-25 Barriers to shared decision making from the FC perspective occur when information is not shared early enough in the child’s illness trajectory, conversations are not conducted with HCPs who have sufficient knowledge of the family, HCPs provide inconsistent information and/or lack capacity to address cultural differences. 21,22,26 Many FCs in our study experienced barriers to shared decision making such as inadequate information about the meaning of LTV for their child and lack of access to LTV or disease-specific experts to address their questions. FCs in this study recommended having access to peer support from families with children who had similar care needs.
There is a small but growing body of research exploring the experiences of transitions from hospital to home of FCs supporting individuals with LTV needs. 27-30 A literature review of 14 studies found that overall FCs demonstrated competence in caring for their child with LTV needs at home but that resounding themes included feelings of isolation when transitioning to home from hospital.28FCs in our study reported that through the LTV discharge pathway, they had acquired competency and skills regarding the routine medical needs required by their child at home. FC reports of knowledge and capacity attainment have been previously linked to teaching by ventilator experts, opportunities to demonstrate self-efficacy prior to discharge home1 and a learning process cycle30 all of which were substantiated in this study.
The initial discharge home was noted to be particularly stressful for FCs. Expectations with respect to being fully responsible for the child’s medical needs at home along with providing continuous 24/7 care created stress and fear. The negative impact on the health and well-being of FCs caring for technologically dependent children at home has been well documented to include higher risks of sleep deprivation, depression and lowered health related quality of life and family functioning.31 Although the experiences of FCs in our study over time were not examined, emotional distress and concerns regarding sleep quality were identified.
FC anxiety were exacerbated by being disconnected from familiar hospital HCPs post discharge. Direct access to hospital experts within the first several weeks after transitioning home was reported as positively impacting problem solving, consolidating learned knowledge and enhanced self-efficacy for ventilator assisted adults transitioning to home .1 We recommend a formal extension of the LTV discharge pathway activities into the first month that includes a telephone follow-up prior to the first LTV clinic visit. In addition, connecting FCs to families of children with LTV who have successfully transitioned home early in the pathway process may be beneficial in terms of helping families understand and prepare for the challenges of being home and navigating coordination of care.30
One of the biggest challenges reported by FCs in our study and previously documented by others3,29,30,32 are issues related to gaps in services in the home setting. In our study, FCs discussed the additional burden of care related to supervising home care nurses as well as the lack of consistent overnight nursing.33 FCs also discussed the incredible amount of time spent on case management including dealing with equipment and supplies. We recommend innovative partnerships with home care nursing agencies to support the training of community nurses which may include matching community nurses to FCs who are learning LTV care in the hospital to support dual learning and relationship building that is continued into the child’s home. Mobile training such as joint medical simulation may be useful for training in the home for home care nurses and continued learning for FCs.30 Given the uptake of new electronic health technologies, opportunities to virtually access the inside of a family’s home, may help HCPs and peer families guide FCs in setting up medical equipment, organizing their home and addressing safety procedures, thus providing an additional layer of support for families.30 [Table 3]
Our study did have some notable limitations. The research was conducted at one point in time and subject to participant recall bias. All FC participants were English-speaking, predominantly mothers, and from well-educated, middle- to high-income families. Although in the sampling strategy, participants were purposefully selected to reflect the diversity of families who live in Toronto, Ontario, Canada, our study results may not reflect the experiences of other socio-economically or linguistically diverse families. It may also not be generalizable to other LTV programs given the different infrastructure and operations that exist nationally and internationally. As such, the caregiver training procedures, community resources and supports for caregivers will vary although the guiding principles would all be the same.