- Children with special health care needs - “Those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.” (McPherson, Arango, Fox, McManus, Newacheck, Perrin, Shonkoff, & Strickland, 1998)
- Chronic illness - “A condition which lasts for a considerable period of time or has sequelae which persist for a substantial period and/or persists for more than 3 months in a year or necessitates a period of continuous hospitalization for more than a month” (Thompson & Gustafson, 1996)
An estimated 13-18% of children in the US live with a chronic illness. The way in which a child adjusts to living with a chronic illness is determined by the specific illness, family dynamic, the child’s unique personality and their developmental stage. Overall, the goal is provide age appropriate education and promote independence and resilience.
- Provide age appropriate education. Re-assess child’s understanding of their illness each year and re-educate/clarify as appropriate. Education should not just be provided at the time of diagnosis.
- Cope with stressors
- Keep child informed.
- Always inquire about feelings and listen, paying attention to body language.
- Prepare for expected stressors such as recurrent treatments (dialysis, chemo), planned hospital stays.
- Rehearse for new, potentially scary situations such as an MRI. Employ the help of Child Life!
- Encourage creative expression.
- Talk about illness often, to portray it as normal.
- Put child in touch with others with the same or similar illness via summer camps, support groups.
- Have a script ready to talk about illness with peers.
- Increase self esteem
- Remind child of their strengths, despite their illness.
- Provide opportunities for them to help others.
- Promote independence
- Encourage independence, both in the management of their illness and other parts of their self care.
- Allow choices in flexible parts of their medical care. For example, allowing them to pick which medication take first, where to sit for a blood draw, when to have a procedure.
- Monitor closely -
- Pay attention to mood and behavior, and have a low threshold for seeking the services of mental health professionals.
Barriers & Solutions by Developmental Stage
- Infants & Toddlers – Developing Trust & a Sense of Security.
- Barriers posed by chronic illness:
- Pain, restriction of motion, and separation from parents.
- Have parents present during painful procedures
- Have a parent/attachment figure present as much as possible during admission
- Hold, soothe, comfort as much as possible
- Barriers posed by chronic illness:
- Preschool Children – Developing Independence.
- Loss of control, limited independence, especially in the inpatient setting.
- Allow choices over flexible parts of illness management (eg: order of medications to be taken at a certain time) but be firm on parts that cannot be changed (timing of medications)
- Have a routine/ritual, and strive to maintain at least one of these in the inpatient setting, such as a bedtime story.
- Find opportunities for the child to help others. Feeling helpful to others can be empowering.
- Early School Aged Children – Developing Mastery over the Environment.
- Chronic illness can limit the amount of independence and mastery over the environment that children normally develop during this stage. At this stage, children engage in magical thinking and while they may better understand their illness, they may still hold false beliefs such as thinking they caused their illness by misbehaving, breaking a rule, etc.
- Teach/encourage age appropriate responsibility in managing their chronic illness in different setting, such as both home and school.
- Reassure that they are not to blame for their illness.
- Have the child talk to their classmates about aspects of their illness to educate their peers. Have a script.
- Have a task that a friend of the child can help out with, such as accompanying the child to the nurse for their scheduled medication.
- Older School Aged Children – Socializing, Friendships
- Feeling different from one’s peers, parental social restrictions out of fear, and school absenteeism are two aspects of chronic illness that can impede the building of peer relationships.
- Put them in contact with others with their illness who have successfully adjusted
- Summer camps, support groups
- Adolescents – Identity, Peer Relationships, Independence, Sense of Control.
- Chronic illness can thwart adolescents’ natural and expected attempts to be more independent, especially if their guardian has been the manager of their chronic health needs up to this point. It is common for teens to “rebel” against the rules governing the management of their disease and start being non compliant. Teens are more likely to be concerned and anxious about the effect of their illness and interventions on their appearance and abilities.
- Encourage teen to take a more active role in their care. Approach it from the angle of wanting to respect their growing ability to take care of themselves and be more independent.
- When addressing non-compliance
- Using motivational interviewing techniques. Avoid using scare tactics and talk calmly about consequences, especially those that have immediate relevance, such as the effect on ability if their illness is not well controlled.
- As mentioned earlier, putting teen patients in contact with older teens/young adults who have successfully adapted to living with their illness can be very effective.
- Anxieties about appearance should not be ignored or minimized, and are best addressed via counseling, especially CBT based strategies.
- Always complete a full HEADSSS assessment on all teens. Do not assume lack of sexual activity, substance use because of chronic illness or disability.
- A note on contraception:
- There continue to be misconceptions about what methods are safe to use in patients with certain chronic illnesses such as Lupus, Sickle Cell, etc.
- Progestin only methods
- Locally acting: Levonorgestrel IUD (Mirena, Skyla), Systemic: Etonorgestrel Implant (Nexplanon), Depot Provera
- In general, progesterone only methods have relatively few contraindications and are not associated with an increased thromboembolic risk as estrogen-containing methods are.
- Non-hormonal: Copper IUD
- A note on contraception:
These articles may be helpful for families of patients with sensory issues and other special needs.
- Chronic Illness and Schooling: An Introductory Overview Outline, Peyton Clausen. http://smhp.psych.ucla.edu/pdfdocs/chronicill.pdf