FAQContact usTerms of servicePrivacy Policy

Special Families, Special Needs

Monday April 21, 2008
<b>Susan Aragona</b>
Susan Aragona
Printer Icon
line
Select Text Size: Zoom In Zoom Out
line
Comment
Share this Nurse.com Article
rss feed
All parents who have more than one child have to deal with sibling arguments and sibling rivalry.

Add to the equation one or more children with special medical needs, and siblings can have even more feelings of jealousy, resentment, helplessness, and guilt.

However, they can also develop empathy and compassion for others.

Nurses in home care, schools, physicians’ offices, and hospitals have unique opportunities to assess the needs of siblings and help to ensure that they are met. It is essential not to generalize — each child’s needs are as exceptional as he or she is.

Whereas an older sibling may feel cheated out of part of his or her childhood that is spent caring for a brother or sister with medical needs, a younger child may wonder why he or she has outpaced an older sibling’s abilities. Another factor to consider when meeting a family is whether a special child’s condition is congenital or something that developed later in life.

Essential communication Vanessa Malcarne, PhD, from the Psychology Annex for Research and Training in San Diego, says that communication is key to discovering the healthy siblings’ needs, assessing their knowledge base, and providing accurate, age-appropriate information about their sibling who has special medical needs.

According to Malcarne, older children may want to assist with caretaking, and even though it would not be acceptable for a 5-year-old to push digoxin into an infant’s gastrostomy tube, it would be appropriate for him or her to hold items while the nurse gives the medication.

Trying to make family life as “normal” as possible is another appropriate goal, which could translate to having one child read a book to a sibling while the parents spend time with the one who has special medical needs (www.jsdn.org).

Support along the way

Nurses can help by exploring options for family support. For example, Camp Nejeda in Stillwater, New Jersey, a camp for children who have diabetes, gives children a chance to be kids and be safe while providing respite for families.

The camp offers Family Camp, which provides fellowship and education for patients, parents, and siblings (www.campnejeda.org).

In one study, siblings of chronically ill or disabled children were sent to their own camp, where they focused on self-esteem, education, and coping skills.

The children who participated in the study showed significant and sustained improvements in social support, self-esteem, and attitude, compared to a control group that was not provided with the same opportunity. (Abstr Acad Health Serv Res Health Policy Meet 2002; 19:3).

In a Canadian study that looked at siblings of children diagnosed with cancer, the researchers found that sadness was the most commonly reported emotion.

The siblings felt sadness about the trauma their brother or sister was going through, the loss of their previous family life, and their own altered roles in the family structure. Even if a child was successfully treated and survived the cancer, the most common description of the event was “sad.”

In addition, when a child with cancer was hospitalized, it was the most stressful time for the entire family. What made the “healthy” sibling feel the best was to participate in the care of the ill child and to be there for him or her, whether by providing physical care or just by treating the sibling nicely (Cancer Nurse 2006; 29[5]).

Ways to cope

Nursing interventions will depend on the patient’s diagnosis and the setting in which the nurse works.

A school nurse may want to organize an assembly presentation on disabilities, raising everyone’s awareness and decreasing the stigma of being different.

An office nurse may connect the family with an organization such as Starlight Starbright Children’s Foundation or an organization specific to a patient’s condition (www.starlight.org).

A nurse in a hospital that has age-restricted visits for infection control purposes may arrange a family visit off the unit. Because a pediatric home care nurse often has the greatest time for family interaction, he or she has a unique opportunity to hear how everyone is feeling and to help family members with what they might need.

Every nurse who cares for children with special medical needs can identify ways to give the whole family the support they need during difficult times.


Sandi Morrow, RN, BSN, CPN, is a pediatric nurse at Bayada Kids, Morris Plains, New Jersey, and at the Inpatient Behavioral Health Unit at Newton Memorial Hospital, Newton, New Jersey. To comment on this story, e-mail editorNJ@nursingspectrum.com.
A Mother's Thoughts

Susan Aragona has become adept at caring for her own five children, finishing her RN studies, and being a pediatric home care nurse.

Her daughter Aniella has Trisomy 18 and receives 16 hours of nursing a day.

What Aragona wants most from the nurses is for them to treat Aniella like any other 2-year-old, who just happens to need a few special interventions. If her siblings want to wrestle around with her and she gets a bruise, Aragona feels that it is part of the experience of growing up with siblings.

However, when she goes into her patients’ homes, she has found — either because of another child’s more fragile condition or the wishes of the parents — that everyone feels differently about how to help a child with special medical needs.

According to Aragona, “It’s most important that the nurse communicate with the family and respect the fact that each parent has his or her own way of doing things.”