For many people, it is hard to put yourself in someone else’s shoes without actually experiencing the situation at hand. This is why it is important to understand what happens inside the hospital and how families perceive and react to their child’s healthcare journey. Most pediatric hospitals use the Family Centered Care (FCC) model where there is a partnership in care between the parent and the healthcare provider. FCC focuses on the importance of having a parent, or a support person, at a child’s bedside when they are sick in the hospital. The goal of this approach is to encourage effective collaboration between the parent and health care provider in regards to needs of the child. Some models suggest that the health care providers should also take care of the parent so that the parent can properly care for their child.
Our research shows that the three largest barriers parents face when having a hospitalized child is the lack of communication with healthcare providers, the inability to perform self care activities, and the shortage of hospitality housing. In all of our supporting articles, it was expressed that hospital organizations continue to lack in providing the resources needed for families to thrive in the hospital setting on a consistent basis. Often times the absence of parental self care has a cascading effect that ultimately will inhibit the care of the ill child. Healthy communication cannot be achieved from a parent who is not physically and emotionally welcomed at the bedside, as well as a parent who is not able to perform self care activities due to insufficient space.
One parent shares her experience of being a parent to a sick child and her empathy towards other parents facing similar situations “When my son was diagnosed with Congenital Heart Defects, I felt very isolated. No one I knew had any experience with such a thing. Every step was a combination of brand new, unknown, and completely terrifying. My son had a few lengthy hospitalizations within his first year and we are lucky enough to live walking distance to the Children’s Hospital. During his recovery, I thought a lot about the other PICU families; are they from out-of-town? Where do they stay? What are their accommodations? How do they take care of themselves if they live at their child’s bedside? These are basic needs that are often forgotten when you’re dealing with a sick child.”
Self- care is incredibly important for families to perform so they can appropriately cope to their child’s healthcare journey. Many parents believe that their child is the only thing they should be concentrating on, which leads to a decrease to self-care routines. Wiener notes that parents have been known to not take care of their health, along with exhibiting decreased relationships with others due to the increased care they need to provide their child, increasing the situational stressors at hand. The decrease in these activities can lead to avoidance and disengagement from parents towards other people (Wiener, 2016). Parents may also show longer term anxiety, depression and posttraumatic symptoms when staying at the bedside of their child without a chance to step away and recharge (Franck,2013).
It should be noted that parents physical comfort was another important aspect of FCC that is sometimes overlooked by institutions (Dudley, 2004). Additionally, some parents felt as though their physical, psychological and emotional needs should be met by healthcare providers, in addition to the needs of the patient. As noted by Foster, parents felt like the delivery of FCC was dependent on the partnership between parent and healthcare professionals and the resources available to assist in the delivery of FCC (Foster,2010). For parents, participation in self-care activities should be just as important as bedside care of their child.
Another study found that staying at a hospitality house nearby was regarded as highly important for parents in the purpose of networking, emotional support and stress relief; all important factors in maintaining self-care. Parents believe these factors assist them by providing more time and energy to put into caring for their child. In a study where parents stayed at a local Ronald McDonald House (RMH), families believed that staying nearby improved their recovery, as opposed to staying at the bedside (Franck, 2013). Other common feelings that parents had when staying at the RMH was an increased support system, taking comfort knowing that there were other families experiencing a similar situation. These examples all assisted parents to cope better and be more engaged with the child’s healthcare team which then increased communication (Franck, 2013). These observations are important in the successful delivery of FCC.
Through establishing a relationship built on healthy communication, healthcare professionals can empower and support families. The lack of communication has an impact on the parent’s ability to take part in decisions and discussion. Lack of respect and understanding from doctors is observed by parents, which can also hinder communication in the healthcare setting (Hummelinck, 2007). In addition to this, a deficient knowledge base and resources are a hindering factor that lead to lack of communication between healthcare providers and parents (Foster, 2010). Feelings of resentment toward staff have a tendency to develop when there is a lack of a mutually respectful relationship based on communication because parents feel they are viewed as a set of hands that can help, rather than a parent (Jolley, 2009). By providing a parent the tools needed to have healthy communication, they can work better with healthcare providers and feel better supported.
