Janet Jackson and Dr. Janelle Macintosh, Nursing Department

Introduction

The purpose of this project was to explore the significance and influence of relationships between healthcare providers (HCP) and parents of children with special healthcare needs (CSHCN) regarding healthcare plans.

In exploring previous research conducted in this area, we found many examples of the stress related to raising CSHCN, including physical, mental, and social stress. Much of this stress involved caregivers feeling unsupported, isolated, and misunderstood. For this reason, we chose to conduct focus groups to gather data and provide connections for these caregivers that would help them feel less stressed.

Research previously conducted in this area lacked an emphasis, and sometimes a presence, of male caregivers involved in raising CSHCN. The impact on father figures and other male caregivers is important to consider, and consequently our population included caregivers of both genders.

Methodology

We conducted a descriptive study and qualitative analysis of comments made during four focus groups. The sample included any caregivers, over the age of 18, of CSHCN who volunteered to participate. Of the four focus groups meetings, three consisted of the same group of female caregivers, while the male caregivers only gathered for one meeting. We had seven female caregivers and twelve male caregivers. Each focus group lasted approximately an hour, following a semi-structured guideline. Group meetings were audio recorded and then transcribed. Data was then analyzed for themes by both myself and my mentor. Using these themes, we were guided in our exploration of the relationships between HCP and caregivers of CSHCN, and how these relationships impact decisions made for the CSHCN’s care.

Results and Discussion

We identified two overall themes from the focus groups, each with critical elements. The first theme involved the concept of Team Child, where the caregivers and HCP worked together directly for the child’s benefit. Team Child consisted of the mothers as the team captains, HCP as consultation and support, and fathers perceiving a greater role for themselves than mothers considered them to play. The second theme included the caregivers’ desires to feel that their child was receiving personalized care. This level of individualized care helped caregivers to trust their HCP, which in turn facilitated the decision-making process and following the HCP’s suggestions.

Team Child

In the discussions with female caregivers about the care for their CSHCN, most women emphasized the importance of working together as a team. Many of them felt obligated to be their child’s advocate, and thus elected themselves as the team captains. Some felt that this responsibility was required because the many HCP consulted did not often work together as a team and would contradict each other.

Some of the caregivers described the opinions of the HCP as no more than an opinion, while others found more importance in their advice. The majority, however, would hear what their HCP wanted to do, and then use their own research to reach a conclusion. In this way, HCP had little impact on the eventual decisions made. Their impacts varied, usually depending on the trust and rapport they developed with the whole family of the CSHCN.

The role of the male caregiver was described differently between the two groups of caregivers. One female caregiver described her husband’s role by stating “my husband is oblivious usually. I love him dearly and he wants to help, but I…know more.” This contrasted with the perspective of the male caregivers. One suggested “it’s more of a medical team of my wife and I, and then we bring doctors in as consultants occasionally.” Any discussion of the male caregivers during the meetings with the females emphasized their lack of involvement, while the males themselves felt wellintegrated into helping make decisions.

Personalized Care

The influence of the HCP’s opinions for how to care for CSHCN depended immensely on the rapport and trust they had gained from the family. One female caregiver related how “individualization is comforting and increases your level of trust.” This idea resonated with the other female caregivers, as well. One of the women shared an example of a doctor who truly knew her child. Her son was diagnosed with a rare disease, and she explained, “he knew him. If I had [gone] to another doctor for that, that would have never been tested…” The HCP discussed by these two women had entirely gained their trust because of how well they knew each patient and family. This is what led these caregivers to value the HCP’s opinions more, which ultimately strengthened the team effort in caring for the CSHCN.

Conclusion

The rapport HCP develop with the families of CSHCN is vital in helping shape the CSHCN’s care plan. It is the responsibility of HCP to respond appropriately to needs and desires expressed by CSHCN and their caregivers so that proper treatment can be understood and utilized. When HCP acknowledge the importance of working as a team for the benefit of the CSHCN and take the time to individualize care for their patients, an optimal care environment is established.