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.