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Introduction   

Home Health is a branch of nursing that focuses on providing care to patients within their homes. The home health nurse travels to the patient’s residence to complete assessments, evaluate the patient scenario, and carry out orders as prescribed by a home health provider. Pediatric patients are also seen and treated within the home. The pediatric home health nurse must recognize the unique challenges and dynamics of caring for pediatric patients in the home setting (3).

Case Study

Bob is an 8-year-old patient with a diagnosis of cystic fibrosis, developmental and physical delay, and other comorbidities that have developed over time. Bob lives at home with his mother and father. His mother, Jill, works part-time from home and acts as the primary caregiver for Bob, while his father, Jim, works full-time outside of the home. They have two other children, both older and without any major health complications. The family lives in a townhome, has family and friends close by, and appears to be well-adjusted to the challenges that come along with Bob’s medical condition.

• After reviewing the patient’s chart, what barriers should be noted?
• How could these barriers be addressed?
• What are some potential benefits of Bob’s living situation?
• How could these benefits be amplified?

Role of the Home Health Nurse

The role of the home health nurse will vary from adult patients to pediatric patients. The pediatric home health nurse role will also vary from other pediatric nursing roles. To understand this difference, one must first understand the pediatric home health nurse’s role.

Some of the pediatric home health nurse’s job duties include assessing the patient, including symptoms and vital signs. The pediatric home health nurse will also assist with or help coordinate diagnostic procedures, such as laboratory blood draws. Next, the pediatric home health nurse will develop a treatment plan and make recommendations and arrangements for follow-up medical care. The nurse will also provide medication as ordered by the patient’s provider and complete minor procedures that are safe to do within the home setting. Finally, the pediatric home health nurse will inform family members about treatments and appropriate education to properly support the patient in progression toward nursing goals (3).

Case Study Review

Suzy, a new pediatric home health nurse, was assigned to Bob’s case. Suzy reviews the patient’s chart and notices Bob was born with Cystic Fibrosis. Bob also has comorbidities of malnutrition, poor growth, and frequent lung infections. The nurse notes orders for antibiotics, bronchodilators, and stool softeners.

The nurse understands these treatments are prescribed for the following diagnoses:

• Antibiotics are for: _____________________.
  • Answer: Frequent lung infections
    • Rationale: Antibiotics can be prescribed for patients with frequent lung infections to assist with recovery and improve overall oxygen saturation.
• Bronchodilators are for: _____________________.
  • Answer: Cystic fibrosis
    • Rationale: Cystic fibrosis increases the difficulty of breathing for patients related to inflammation of the airways, sticky mucous lining the airway, and other complications. Bronchodilators help relax the muscles surrounding the airway, ultimately assisting with opening the airway further and helping make it easier to breathe.
• Stool softeners are for: _____________________.
  • Answer: malnutrition
    • Rationale: The sticky mucous found along the airways reduces a patient’s ability to properly absorb nutrients, ultimately leading to poor digestion. A secondary side effect of this includes constipation and difficulty passing bowel movements. The stool softener can help alleviate this concern.

When preparing family education for this treatment, the nurse understands the importance of each of the treatments and shares these with the family to help encourage support of timely administration.

The importance of the treatments is as follows:

• Antibiotics prevent further complications of: _____________________.
  • Answer: Lung and airway infections
    • Rationale: Reducing infections overall also reducing swelling associated with such infections. This is particularly helpful for patients with cystic fibrosis, as any additional swelling will only increase difficulty breathing.
• Bronchodilators reduce complications of: _____________________.
  • Answer: difficulty breathing
    • Rationale: Bronchodilators help relax the muscles surrounding the airway, ultimately assisting with opening the airway further and helps make it easier to breathe.
• Stool softeners aid with and prevent: _____________________.
  • Answer: constipation
    • Rationale: Malnutrition is a common concern for cystic fibrosis patients. The sticky mucous found along the airways reduces a patient’s ability to properly absorb nutrients, ultimately leading to poor digestion. The stool softener can help alleviate constipation, reduce hemorrhoids from “pushing” and prevent more serious complications – such as bowel rupture.

Pediatric Conditions

Some pediatric conditions that the pediatric home health nurse may assist with include complications from premature birth, childhood cancer, neurodegenerative disease, developmental disease, or genetic diseases. Other health conditions the pediatric home health nurse may encounter include repository conditions, assisting in recovery from serious injury, cardiac disease, nutritional deficiencies, or chronic pulmonary disease.

Beyond providing this care in the home setting, pediatric home health nurses may also be hired to provide care in the school setting, including transportation to and from. Pediatric home health nurses may also assist with other outings, such as social activities and community events. Lastly, a pediatric home health nurse may be asked to assist with exercise and play (4).

Case Study Review

After establishing care with the pediatric patient, Suzy is asked to assist the patient and his family on a trip to the park. There, they will spend time as a family and help Bob utilize the all-abilities playground.

• Nurse Suzy understands that her role as the pediatric home health nurse will apply by doing which interventions or care in this setting?
• Describe some tools and supplies nurse Suzy should have available during this outing.

Types of Care

The type of care a pediatric home health nurse may provide depends on the diagnosis and complications a patient is currently facing. There are multiple treatment types and modalities including IV therapy, tracheotomy, ventilator, wound care, feeding tube maintenance, catheters, and drains, among many others.

The pediatric home health nurse should be prepared to provide interventions including (4):

• Personal care
  • Bathing
  • Grooming
• Pharmaceutical preparation
  • Medication coordination
  • Medication organization
• Pharmaceutical administration
  • Oral
  • IV
  • Inhalation
• Tracheostomy care
• Respiratory support
  • BiPAP
  • CPAP
  • Respirators
  • Ventilators
• Wound care
• Education
  • Family
  • Patient
  • Training
    • Respite
    • Psychosocial support
• Mobility exercises
• Transfers

In addition to the above skills, home health is often associated with hospice. Hospice focuses on end-of-life care. Respite is another parallel nursing skill, utilized to provide parents and caregivers with a break of ongoing care for their child (7). While hospice and respite are often used in conjunction with home health, the skill set of a pediatric hospice or respite nurse varies slightly and often is assigned separately to nurses seeking out these vocational opportunities.

Case Study Review

Nurse Suzy has now been Bob’s pediatric home health nurse for 1 year. She has developed a trusting and therapeutic relationship with the patient and the patient’s family. During her time at home, Nurse Suzy notices the primary caregiver, Jill, appears more exhausted than usual. Nurse Suzy feels comfortable enough to ask how she is doing, and Jill opens up about the recent decline in Bob’s health and how difficult it is for her. She expresses feeling guilty for having these feelings, which has impacted her sleep even more than just worrying about her child.

• Describe signs and symptoms of caregiver burnout.
• What could nurse Suzy discuss with Jill to support the patient’s caregiver?
• What parallel modality may Nurse Suzy suggest?

Providing Patient and Family Education

In a traditional nursing setting, education is typically provided to the patient directly. The patient also dictates who they would like to be involved in this education, if anyone at all. When a pediatric patient is the focus, education should be geared toward the family while still using terms that a pediatric patient can understand.

If a parent or guardian determines that education should not be provided to the patient directly, the nurse can accommodate this request. However, it is important for the nurse to first understand the reasoning for excluding the patient from this education and inform the parent or guardian of the repercussions of their choice. The nurse should also document this in the patient’s chart.

Education for the pediatric patient and their family should focus on a few key characteristics (2):

• Diagnosis
• Symptoms
  • Symptom management – what symptoms are considered:
    • Emergent
    • Urgent
    • Non-urgent
  • Symptom escalation – what symptoms need to be reported and to whom depending on classification.
• Plan of care
  • What the diagnoses are
  • What the treatments are for these diagnoses
  • What next steps are for follow-up, diagnostic, and treatment – if indicated
• Follow-up appointments
  • Appointment dates, times, providers, and locations
    • Also, what additional workup should be done before these appointments
• Medication
  • Medication regimen
    • When to take it
    • If the patient should take it with or without food
  • Medication side effects
• Symptom management – what symptoms are considered:
  • Emergent
  • Urgent
  • Non-urgent
• Symptom escalation – what symptoms need to be reported and to whom depending on classification.

These educational items should be determined by first completing an assessment of the patient’s needs. Once educational needs are determined, the nurse should provide pertinent information in layman’s terms. Similarly, the nurse should complete “teach back” – a method of checking a patient’s understanding by having them state back in their own words what they understood of the nurse’s instructions (2).

The nurse should consider other forms of education based on the patient’s and family’s preferences. For example, having a visual when describing the procedure may be helpful to visual learning. Providing hands-on training for the application of wound care dressing may be helpful for tactile learners.

Case Study Review:

Bob has experienced a recent decline in his overall health. The ongoing lung infections plus seasonal flu have put Bob in a very critical state, where he was hospitalized for a week. Between unplanned medical costs and concern for their son’s health, Bob’s parents seem overwhelmed with care to be done post-discharge from the hospital.

• What educational priorities should be added to patient and family education in this situation?
• What method should be applied when providing education to the family?
• How will Nurse Suzy know that Bob’s parents understand what was taught to them?

Signs of Abuse and Reporting Guidelines

Unfortunately, pediatric home health patients are not exempt from the possibility of abuse or neglect. The pediatric home health nurse must be able to recognize signs of abuse or neglect and the appropriate routes of reporting. Signs of abuse or neglect will vary based on the age and developmental stage of the pediatric patient (6).

Behavioral clues of abuse or neglect include the following (6):

• Excessive crying in infants
• Developmental delay
• Fear, anxiety, or clinging
• Phobia
• Nightmares or other sleeping problems
• Bedwetting
• Hyperactivity
• Poor concentration
• Decreased school performance
• Peech disorder
• Regressive behaviors for age
• Fear of parent or guardian
• Eating issues
• Depression
• Verbal or physical abuse of others
• Destructive behaviors
• Substance abuse
• Self-harm behaviors
• Sexualized behavior
• Symptoms of PTSD
• Withdrawal, especially to touch
• Overly compliant

Symptom clues of abuse or neglect include (6):

• Headache
• Abdominal pain
• Vague complaints
• Worsening medical condition
• Frequent, unexplained sore throats
• Abnormal weight gain or loss
• Reluctance to use an extremity
• Difficulty walking or sitting
• Genital discomfort or painful urination/defecation
• Unexplained symptoms
• Vomiting, irritability, or abnormal respiration – signs of head trauma

Physical clues of abuse or neglect are the most common manifestations of abuse. These include (6):

• Poor hygiene
• Inappropriate attire for the weather
• Failure to thrive
• Lack of medical care
• Factures
• Dislocations
• Bruising
• Defensive injuries on forearms
• Bites
• Burns
• Signs of restraints
• Trauma to ear
• Laceration
• Traumatic hair loss
• Facial injuries without explanation
• Oral or dental injuries
• Head injury – including mental status change
• Retinal hemorrhage
• Subdural hematoma
• Intraabdominal trauma
• Bruising, tearing, or bleeding or the genital or rectal area
• STD diagnosis or pregnancy

Reporting any of the possible signs or symptoms of abuse or neglect is necessary for the pediatric home health nurse. Early reporting, whether child protective services deem it a concern or not, can prevent failure to thrive.

In some extreme cases, early reporting could save a child’s life and allow them the space and opportunity to heal from the abuse/abuser. To assist in this serious responsibility of the nurse, the pediatric home health nurse should become familiar with their local reporting laws and understand the recommendations. Every state varies in its reporting law, so the pediatric home health nurse will need to locate and review the necessary steps therein (1).

Case Study Review

Nurse Suzy has observed a few bruises here and there on Bob’s body in the past. When doing her physical assessment of the patient previously, she noticed bruising in common areas such as the shins or elbows. However, Nurse Suzy has observed an increase in bruising on the patient’s body since returning home from the hospital.

Nurse Suzy remembers learning about signs of abuse and neglect in nursing school, plus her annual workplace training on it. Nurse Suzy has a good relationship with the patient and his family and second-guesses herself about the need to report this abuse. Nurse Suzy decides to look at the patient’s lab results to rule out any medical indication for an increase in bruising.

When there appears to be no abnormal lab work, Nurse Suzy decides to continue to monitor it during her upcoming shifts. A few additional bruises have arisen, now on the patient’s shoulder, neck, and wrists. Should nurse Suzy report the bruises to the local child protective services?

Advocacy

In addition to monitoring for signs and symptoms of abuse or neglect, the pediatric home health nurse should also act as an advocate for both the patient and the patient’s family or caregivers. Some of the advocacy needs currently include (5):

• Nursing shortages
  • Advocating for safe staffing practice
• Pediatric mental health
  • Proper assessment, knowledge, and skills for children
• Violence or injury
  • Unintentional violence or injury is the leading cause of morbidity and mortality in all age groups, excluding birth to 1 year of age.
  • Maltreatment of pediatric patients must be assessed and reported.
  • Emotional or psychological abuse is more difficult to observe but can cause long-term injury to the pediatric patient.
  • Gun violence is an increasing concern for pediatric populations
• Health disparities
  • The pediatric home health nurse should understand and advocate for health disparities that impact the patient’s care.
• Social determinants of health
  • Conditions or environments that impact the patient’s health, functioning, quality of life, and outcomes.
  • Five categories
    • Economic stability
    • Education access and quality
    • Healthcare access and quality
    • Neighborhood and built environment.
    • Social and community context
• Sexual and gender identity
  • Unique growth, development, and emotional needs are present for LGBTQIA+ pediatric community.
• Pediatric physical wellness
  • Physical activity for the pediatric patient population helps promote health and prevent illness.

Case Study Review

Nurse Suzy ultimately reported the signs of abuse to Child Protective Services, but the case was dismissed. Jill, Bob’s mom, confides in Nurse Suzy stating how upsetting it was to have the agency knock on her door. She states that with Bob’s decrease in health, she has had to move him around a lot more by herself. Previously, he had enough strength to ambulate mostly by himself, with assistance from his mom on occasion. Nurse Suzy does not disclose that she reported those signs but does ask some follow-up questions to use this as an opportunity for education. Nurse Suzy ultimately determines that certain social determinants of health are impacting the patient’s family to afford a lifting device – such as a Hoyer lift.

• What could Nurse Suzy do to help address the financial and emotional difficulties the family is facing?
• What resources or referrals could help the patient and their family in this difficult time?
• What other areas of advocacy might Nurse Suzy be overlooking currently?
• How could nurse Suzy assess for other advocacy needs?

Conclusion

Being a home health nurse is a unique experience, often providing outstanding care despite the limitations of a home setting. Home health nurses are creative, resourceful, and passionate about supporting patients’ health in the comfort and convenience of being seen and treated in their own homes. Pediatric home health takes this challenge to another level, as the complexity and acuity can often be higher in the pediatric population. While this may be overwhelming to nurses who have limited background and exposure to the home health setting, the ability to impact patients’ lives when they are homebound, struggle to travel to and from the hospital safely, or need ongoing support is rewarding.

By being aware of the unique challenges and dynamics of providing care to pediatric patients in the home setting, the pediatric home health nurse can impact the patient’s health for the better.

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