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As a clinical provider, the voices of patients and families are important to integrate into a
care plan. Their perspective, feelings, and goals should be respected, despite how the clinician
may feel. As a future advanced practice nurse (APN), I have been trained to provide holistic
healthcare with measurable and attainable goals. It is impossible to meet the needs of a patient
and family without their input. The family mentoring project (FMP) is an excellent way for
LEND trainees to be immersed in the lives of a patient and family for a brief period in time. In
my experience, two MCH goals and objectives were outstanding: knowledge base/context and
critical thinking. I will discuss insights from my experience with the patient and family (the child
whom I will refer to as Laurel; the family whom I will refer to as the Donovans) as well as how
this has impacted my leadership development. Later, I will discuss how this FMP experience will
impact working with patients with special healthcare needs and their families as well as how
other special health care (SHC) impacts the family, healthcare professionals, and society. I have a
cousin with hydrocephalus and an intellectual disability (ID), which was a direct result of a
delayed delivery. I have seen firsthand how the family unit is impacted by a child with special
healthcare needsas an older cousin, I tried to incorporate her in activities and protect her from
others harsh comments or judgments. In Laurels case, her mother and medical condition served
Laurels mother, Deb, was a stay-at-home mother, a position that she had held since
having her first child. Laurel was her fourth and last child, who was diagnosed with
Lauren Grant RN, BSN, CPN
Family Mentoring Project (FMP)
4/16/17
tracheomalacia and later, an ID. Thus, Deb served as the primary provider for her child, while
her husband was the household provider. Laurel is medically complex and if her mother is not
around, a nurse must be around due to increased risk for infection, occasional episodes of
shortness of breath, or coughing spells, which require a nebulizer treatment. For this reason, Deb
is unable to work full-time and most of her time centers on Laurelwhether transporting her to
Yet, Deb did highlight Laurels web of support from her family, friends, parents of
children with developmental disabilities, school personnel, and the medical team at Cincinnati
Childrens Hospital. At her 16th birthday party, some of that community was present. Laurels
aunt owned a bar, so the party was held there. It had a family-oriented atmosphere with a movie
theater theme. When I walked in, Laurel was dancing with her friends who were laughing and
singing karaoke. No one joined the teens on the dance floor; it seemed more like the guests were
watching a performance.
When reflecting on that moment, I acknowledge my own perceptions for people with
disabilities. They are a minority and inclusion can be difficult. While people with disabilities
may look like typically developing peers, others are phenotypically different like those with
genetic disorders or Downs syndrome for example. Our society is attuned to categorizing
people. Often, in this case, it can be strongly dependent on physical features in addition to what
someone can or cannot do. These impressions do not reflect the individuals personality, her
aspirations or goals in life. Sometimes, it can be scary to be the person who is different.
Lauren Grant RN, BSN, CPN
Family Mentoring Project (FMP)
4/16/17
about people with disabilities. My first cousin has hydrocephalus and a developmental disability.
Growing up, she did look much different than the rest of my family, but thats not what I
remember the most about our childhood together. I remember she would get so excited telling a
story that she would stutter, and we would have to remind her to slow down. I remember how
she loved to sing especially gospel songs. I remember that she was curious about
EVERYTHING; there wasnt a question that she didnt ask. Yet, most importantly, she was and
is always happy. To have such an impenetrable joy and to have constant laughter nearby is
infectious. I enjoyed growing up with her, and so this is my impression of people with
disabilities.
When I interacted with Laurel and her mother, I constantly felt like I heard more about
what Deb wanted for her Laurel as oppose to what Laurel wanted for herself. Deb said Laurel
wanted to work at Project Search at Cincinnati Childrens Hospital, and this has been her
dream. Yet, I never heard Laurel mention it once. Constantly, I found that bothersome because
in my experience with the family. The mother was polarizing and often, it would be easy to
forget Laurel was there; she was quiet and shy. Debs dreams for her daughter resounded because
for the most part, she was Laurels voice. In my perception, Deb was so intertwined in her
daughters life that she took on the role of determining what was next, or Laurel may not have
Understanding the patient and family perspective is important. It is vital to our practice
and imperative so that we can provide family-centered care. Often, this coined phrase is
overused, and not implemented well in practice. As a nurse leader, I listen to a familys
Lauren Grant RN, BSN, CPN
Family Mentoring Project (FMP)
4/16/17
perspective in order to meet the familys medical and psychosocial needs. The FMP has
exemplified how and why listening to a family is necessary. For Deb, she plays different roles as
wife, mother, provider and advocate for her child with a developmental disability. Laurel plays
an important role in the family. The Donovans do their best to protect herwhether in the
decision to provide birth control or ensure legal guardianship has been discussed between the
A leader takes the time to understand these dynamics. When a family is advocating for
their child and their goals do not align with a medical provider, this should not be seen as a
challenge. The family knows the childs strengths and capabilities as well as what is best for their
child at a given point in time. According to Deb, the Donovans did not know that Laurel had a
learning disability until she was in the third grade. By that time, she had various operations for
her medical condition. It became a priority to bring Laurel to DDBP where she was diagnosed
DDBP appointment may need to be cancelled or a recommended therapy may need to be delayed
This experience taught me how to advise families to advocate for their child. As a
medical provider, I saw firsthand that a caregiver, family, or medical team needs to be flexible.
Based on my education and training, my role is to provide the family with information and
advice that will help the child function to their optimal level, making sure the goals are
measurable, realistic, and appropriate. Having this insight will make me a better leader so I can
advocate for my patients and have a better understanding of the priorities for a family with the