Lauren Grant RN, BSN, CPN

Family Mentoring Project (FMP)

4/16/17

FMP GOALS & OBJECTIVES

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

their healthcare outcomes may be improved.

Knowledge base/context addresses how a child with a developmental disability (DD) or

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

as her shield from society.

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

school or to various doctors appointments.

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

People use their preconceptions, stereotypes, or generalizations to guide their judgments

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

shared that will us.

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

family and the other children.

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

with a developmental disability. Yet, if she acquired a respiratory infection or complication, a

DDBP appointment may need to be cancelled or a recommended therapy may need to be delayed

until she stabilized.

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

child who has special needs.