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Introduction   

Home Health is a branch of nursing that focuses on providing care to patients within their home. The home health nurse travels to the patient’s residence to complete assessments, evaluate the patient scenario, and conduct orders as prescribed by a home health provider. When caring for pediatric and adult home health patients, patients may have special needs that increase their level of nursing care and require additional support and education. The home health nurse must be aware of the unique challenges and dynamics of providing care to special needs patients in the home setting (5). 

Introduction 

Home Health is a branch of nursing that focuses on providing care to patients within their home. The home health nurse travels to the patient’s residence to complete assessments, evaluate the patient scenario, and conduct orders as prescribed by a home health provider. When caring for pediatric and adult home health patients, patients may have special needs that increase their level of nursing care and require additional support and education. The home health nurse must be aware of the unique challenges and dynamics of providing care to special needs patients in the home setting (5). 

Definition 

Special needs can refer to multiple situations or certain medical conditions or comorbidities. Often used in reference to children with obvious physical impairment or mental delays, the term special needs often limits both pediatric and adult patients to only certain medical conditions. However, special needs focus on any physical, developmental, sensory, behavioral, cognitive, or emotional impairment that limits one’s ability to maintain optimal health without medical management or healthcare intervention (5).  

Pediatric Conditions 

It is important for the home health nurse to understand which pediatric conditions are most associated with the term special needs. With the term Special Needs covering a wide range of limitations, listing all associated pediatric conditions would be lengthy. When referencing pediatric patient populations, the utilization of the Individuals with Disabilities Education Act (IDEA) can help the home health nurse prepare to better support the patients. While not all inclusive, IDEA identified thirteen categories of disabilities which include the following categories and a few examples of each (1): 

• Specific learning disability (SLD) 
  • Dyslexia 
  • Dyscalculia 
  • Written expression disorder/Dysgraphia 
• Speech or language impairment 
  • Lisp  
  • Stuttering 
• Other health impairment 
  • ADHD 
  • Tourette Syndrome 
  • Epilepsy 
  • Sickle Cell Anemia 
• Autism Spectrum Disorder (ASD) 
• Intellectual Disability 
  • Down Syndrome 
• Emotional Disturbance 
  • Anxiety disorder 
  • Bipolar disorder 
  • Oppositional defiant disorder 
• Developmental delay 
• Multiple disabilities 
• Hearing impairment 
  • Auditory processing disorder 
  • Deafness 
• Orthopedic impairment 
  • Cerebral palsy 
• Visual impairment 
  • Blindness 
• Traumatic brain injury 
  • Shaken baby syndrome. 
• Deaf blindness 
  • Severe hearing and vision loss, combined. 

As a home health nurse for pediatric patients with special needs, the nurse may assist within the home for complications associated with the thirteen categories outlined by IDEA. Pediatric home health nurses may also be hired to provide care in the school setting, including transportation to and from, assist with other outings, such as social activists and community events, or even assist with exercise and play. 

Adult Conditions 

Like that of pediatric patients, special needs within adult patient populations vary significantly. To ensure the home health nurse is prepared to care for adult patients with special needs, the nurse should be familiar with the lists of impairments as outlined by the Disabilities Evaluation Under Social Security. While not all inclusive, the Disabilities Evaluation Under Social Security identified fourteen categories of disabilities that are applicable for adults including some examples (6): 

• Musculoskeletal disorders 
  • Rheumatoid arthritis 
• Special senses and speech 
  • Blindness 
• Respiratory disorders 
  • Cystic fibrosis 
• Cardiovascular system 
  • Chronic Heart Failure 
• Digestive disorder 
  • Inflammatory Bowel Disease 
• Genitourinary disorders 
  • Chronic Kidney Disease 
• Hematological disorders 
  • Hemolytic anemia 
• Skin Disorders 
  • Photosensitivity Disorder 
• Endocrine Disorders 
  • Pituitary gland disorders 
  • Thyroid gland disorders 
  • Parathyroid gland disorders 
  • Adrenal gland disorders 
  • Diabetes and other pancreatic gland disorders 
• Congenital disorders that affect multiple body systems 
  • Non-mosaic Down Syndrome 
• Neurological disorders 
  • Epilepsy 
• Mental disorders 
  • Schizophrenia Spectrum Disorder 
• Cancer (malignant neoplastic disease) 
  • Primary, recurrent, or metastatic cancers 
• Immune system disorders 
  • Systemic Lupus Erythematosus (SLE) 

As a home health nurse for adult patients with special needs, the nurse may assist within the home for complications associated with the fourteen categories outlined by the Disabilities Evaluation Under Social Security, among others. Though not as common as assisting with pediatric patients, home health nurses may also be hired to provide care in the workplace, including transportation to and from, assist with other outings, such as social activities and community events, or even assist with exercise and play. 

Role of the Home Health Nurse 

The role of the home health nurse will vary from adult patients to pediatric patients. The home health nurse role will also vary depending on the special needs of the patient. Regardless of the patient population, the home health nurse job duties include (3): 

• Assessing the patient 
  • Symptoms 
  • Vital signs 
• Coordinate diagnostic procedures 
  • Laboratory blood draws 
  • Imaging procedures 
  • Surgeries 
• Developing a treatment plan 
  • Make recommendations 
  • Arrangements for follow-up medical care 
• Provide medication, as ordered 
• Complete minor procedures  
• Educate 
  • Patient 
  • Family 
  • Other identified caregivers 
    • Regarding 
      • Diagnosis 
      • Treatments  
      • Nursing goals 

Types of Care 

The type of care a home health nurse may provide depends on the diagnosis and complications a patient is currently facing, as well as any special considerations associated with the patients’ special needs. The home health nurse should be prepared with the nursing skills to provide the following nursing interventions (3): 

• 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 

Providing Patient and Family Education 

In a traditional nursing setting, education is typically provided to the patient directly. In the case of providing education to patients with special needs, the nurse must consider a few key factors when determining if the patient is the correct individual to direct nursing education towards: 

1. What is the patient’s primary diagnosis/comorbidities? 
2. What special needs have been identified for this patient? 
3. Are there signs of additional special needs that have not been previously identified? 
4. Do either the diagnosis and comorbidities or the patient’s special needs limit their ability to properly intake, process, and apply provided education? 

If any of the above questions present concern that educating the patient directly may not be successful or beneficial, the nurse should consider if family, friends, or other caregivers can be present for this education. Similarly, the home health nurse should consider if providing education in the presence of the patient will negatively impact the patient’s wellbeing. Depending on the patient’s diagnosis, comorbidities, and special needs, the nurse may identify that patient education may cause distress for the patient. It is important for the nurse to first understand the reasoning for excluding the patient from this education and inform the family, friends, and other caregivers or identified guardians of the repercussions of their choice surrounding patient education. The nurse should also document any inclusions or exclusions of individuals in the education process within the patient’s chart. 

Education for the home health patient and their family, friends, or caregivers should focus on a few key characteristics (2): 

• Diagnosis 
• Symptoms 
  • Symptom management 
    • Emergent 
    • Urgent 
    • Non-urgent 
  • Symptom escalation 
• Plan of care 
• Follow-up appointments 
• Medication 
  • Medication symptoms 

These educational items should be determined by first completing an assessment of the patients’ needs. Once educational needs are determined, the nurse should provide pertinent information in plain language. 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).  

In addition to providing education about their medical diagnosis and supportive care, the nurse should also assess the level of awareness, understanding, and application of knowledge surrounding the patient’s special needs. For some patients and their families, grief may be related to either their medical diagnosis or the special needs that are present. It is important for the home health nurse to assess if: 

• The patient/patients support system is aware of the special needs. 
• The patient/patients support system accepts these special needs. 
• The patient/patients support system is experiencing or presenting with signs of grief including: 
  • Denial – denied the existence of special needs. 
    • i.e. “My child doesn’t have Autism.” 
  • Anger – show signs of anger surrounding the existence of special needs. 
    • i.e. “That stupid doctor says my son has Autism.” 
  • Bargaining – expresses bargaining statements surrounding the existence of special needs. 
    • i.e. “If only I didn’t want to have kids until I was 35, then my son wouldn’t have Autism.” 
  • Depression  
    • i.e., “I don’t think I can live with raising a son with Autism. It’s just too hard.” 

Ethical Considerations 

Beyond ensuring that patients with special needs are properly supported in the diagnosis, treatment, and education surrounding their medical conditions, the home health nurse must be aware of ethical considerations of this patient population.  

Unfortunately, patients with special needs are at risk for abuse and neglect. In fact, approximately three out of five children with special needs will experience neglect, 10% experience physical abuse, 7% experience sexual abuse and 15% experience more than 2 maltreatment types (4). For adults with special needs, approximately 30% will experience some form of abuse including physical, emotional, sexual, exploitation, neglect, and abandonment (7). 

Because of the prevalence of abuse and neglect, it is vital for the home health nurse to recognize the signs and understand the appropriate routes of reporting. Signs of abuse or neglect will vary based on the age and developmental stage of the home health patient (8). 

Pediatric behavioral clues of abuse of neglect include the following (8): 

• Excessive crying in infants 
• Developmental delay 
• Fear, anxiety, or clinging 
• Phobia 
• Nightmare or other sleeping problems 
• Bed wetting 
• Hyperactivity 
• Poor concentration 
• Decreased school performance 
• Speech 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 (8): 

• 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 manifestation of abuse. These include (8): 

• Poor hygiene 
• Inappropriate attire for weather 
• Failure to thrive 
• Lack of medical care/need being addressed 
• 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 
• Intra-abdominal 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 home health nurse. Early reporting can prevent failure to thrive in both pediatric and adult home health patients. In some extreme cases, early reporting could save the patient’s life and allow them the space and opportunity to heal from the abuse/abuser. To assist in this serious nursing responsibility, the home health nurse should become familiar with their local reporting laws and understand the recommendations. Every state varies in their reporting law, so the home health nurse will need to locate and review the necessary steps therein.  

Conclusion

Being a home health nurse can be rewarding but comes with certain unique challenges. When caring for pediatric and adult home health patients, patients may have special needs that increase their level of nursing care and require additional support and education. The home health nurse must be aware of the unique challenges and dynamics of providing care to special needs patients in the home setting. For pediatric patients, the nurse should be aware of the 13 categories of disabilities outlined by the Individuals with Disabilities Education Act (IDEA). For adult patients, the nurse should be aware of the 14 categories of impairments as outlined by the Disabilities Evaluation Under Social Security.  

The role of the home health nurse will vary between adult and pediatric patients and depend on the special needs of the patient. The type of care a home health nurse may provide depends on the diagnosis and complications a patient is currently facing, as well as any special considerations associated with the patients’ special needs. When providing education to a patient with special needs, the nurse should consider if family, friends, or other caregivers can be present for this education.  

The home health nurse must also be aware of ethical considerations of this patient population. Reporting any of the possible signs or symptoms of abuse or neglect is necessary for home health patients with special needs. Early reporting can prevent failure to thrive in both pediatric and adult home health patients and may even save the patient’s life. 

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