Caring for families of chronically ill kids.

[Guest guest]

RN

                                                                February

1, 2003

HEADLINE: Caring for families of chronically ill kids.

BYLINE: Godshall, an

   Do you do all that you can to address the many needs of the

families of

 chronically ill children? This nurse shares 12 practical tips for

fine-tuning

 your care.

    Nursing care for children with chronic illnesses, such as

cystic fibrosis

 (OF), cerebral palsy (CP), or a chronic heart or respiratory

condition, calls

 not only for expert technical skill but sensitivity to the needs of

the parents

 and the rest of the family. An estimated 31% of children in the

United States

 have one or more chronic illnesses. (1) These children often require

frequent

 hospitalizations for both acute illnesses and exacerbations of their

chronic

 condition. (2)

    The parents (or other caregivers) will naturally feel

anxious about their

 child. In some cases, that anxiety combined with a feeling of

powerlessness may

 lead to controlling and overprotective behaviors. (3) At the same

time, parents

 of chronically ill children typically have developed expertise in

managing their

 child's symptoms, and they want healthcare providers to value their

 participation in their child's care. (2)

    While some of these parents may be viewed as " difficult, "

nurses who learn

 to understand them frequently discover that the experience helps them

grow both

 professionally and personally. The key lies in building a mutual

trusting

 relationship. This not only allows parents and nurses to care for the

child

 collaboratively, but can also increase the quality of care for the

child (2)

 The following suggestions are based on my experience caring for these

patients

 and their families.

    1. Familiarize yourself with the child's condition. Before

you even enter

 the child's room, familiarize yourself with the child's illness. Ask

fellow

 staff members for their insights, or research the child's specific

condition.

 This is particularly important if the child's disorder is rare.

Parents are

 often well-versed in their child's illness, have much experience with

healthcare

 providers, and may therefore have high expectations about the care

being given.

    2. Present yourself openly and honestly. When you walk into

the child's

 room, introduce yourself to both the patient and her parents. If

you're a new

 nurse, say so. If you have a pediatric background, let them know. If

you don't,

 simply state that, and convey your professionalism by showing your

willingness

 to attend to the child's needs and their concerns. Being open and

honest will go

 a long way toward establishing a trusting relationship with the

family.

    Parents will be assessing your abilities to care for their

child; some may

 even " test " you. For example, a parent might say, " If my child has a

seizure,

 what would you do? " In your response, don't become defensive. You

might give a

 brief description of how you would handle the situation, and then ask

the

 parent, " How have you handled your child's seizure? " Supporting the

parents,

 respecting their insight, and acknowledging how frightening it must

be for them

 when their child has a seizure will demonstrate that you're on their

side.

    3. Show the family that you understand their burden.

Caregiver burden is a

 term used to define the combination of physical, psychological,

social, and

 financial problems faced by family members who care for a child with

a chronic

 illness. (4) Parents of chronically ill children often have higher

levels of

 depression and anxiety than parents of healthy children, and often

experience

 financial and marital troubles. (1)

    Families who can't afford to hire caregivers must take on

the entire

 caregiving responsibility themselves. To make the time to provide

proper care,

 some family members may be forced to work part-time, or not at all,

which can

 compound financial difficulties.

    Families of children with a chronic illness may not get the

opportunity for

 typical family activities. That's because they may use their vacation

time for

 doctor's appointments or hospital stays, rather than for trips to the

beach.

    In addition, parents may not have the time to properly care

for themselves.

 One mother of a child I cared for put off her elective surgery for

more than a

 year because her son received only eight hours of home nursing care

each day,

 and there was no one else to care for him overnight.

    Let parents know that you understand their burden, and offer

to help them in

 whatever ways they need. When their child is hospitalized, parents

may need to

 hear from you that it's OK to " take a night off. " Assure them that

their child

 will be cared for appropriately, and be willing to give them a

detailed update

 when they call.

    4. Take time to listen. To understand what's going on with

your patient, you

 need to spend time in the room with the child and her family.

Although staffing

 ratios may make this difficult, whenever possible, make time to speak

with the

 parents. For example, you can talk with them while performing a

routine task at

 the bedside. (5) Taking time to listen to the parents will help you

gain a

 better understanding of what they go through each day. If you don't

make time

 for this, you'll miss a valuable opportunity to build a relationship

with them.

5. Include parents in your plan of care. Parents of a chronically ill

child

 often prefer to have high levels of participation in, and control of,

their

 child's care while she is hospitalized. (2) Ask parents if they would

like to

 participate in their child's care while the child is hospitalized,

and if so,

 how. Allow them to make choices. If you don't show that you recognize

the

 parents' expertise and concerns and are willing to incorporate them

into your

 plan of care, you risk creating a climate of distrust, and possibly

anger and

 blame. (6)

    The most important way of including parents is to keep them

informed.

 Parents have the right to expect information about their child's

condition,

 prognosis, and treatment to be shared openly and in a timely manner.

(2)

    Another way to include parents is to ask them how they

manage their child's

 care at home and adapt your plan to the family's rituals wherever

possible. Ask

 parents, for example, if there are any tricks they use at home to

administer

 medications that can be crushed--does their child prefer to get their

medication

 in applesauce or in ice cream? Accommodating the child's home

routines also

 helps to relieve her anxiety caused by the hospitalization.

    Changes in a child's medications or treatments may be a

cause of concern for

 the parents. When a change is required, discuss with the parents how

it might

 fit best into their established schedule, while letting them know

that some

 hospital routines cannot be changed. The goal should be to adapt the

 hospitalization to the child whenever feasible, and not the other way

around.

    6. Treat each child as an individual. This starts, of

course, with treating

 each child with respect and dignity--which parents will want to see.

Avoid using

 diagnostic labels that stereotype a patient. For example, don't

generalize and

 say, " All CF kids respond in a certain way. " They don't.

    Making things as normal as possible for the child will also

help the

 parents. One way to do this is to suggest recreation that's suitable

for the

 child. Find out her interests, and encourage her to contact her

friends. For a

 prolonged hospitalization, help the parents contact the school to

arrange for

 schoolwork to be completed in the hospital, if possible. If there are

children

 on the unit who are of the same age as your patient--and whose

physical status

 is similar--arrange for them to meet. These informal support groups

are quite

 helpful in making the child feel normal.

    7. Allow older children to make decisions in their care.

Parents of a child

 with a chronic illness may want their child to become increasingly

involved with

 her own care. 2 Allowing the child to do so may help foster

independence The

 American Academy of Pediatrics' Committee on Bioethies recommends

that children

 participate in decisions appropriate to their development, agree to

care when

 reasonable, and not be excluded from decision-making without a

persuasive

 reason. (7) Some level of involvement in care should be gradually

transferred to

 the child as early as age 6, and by doing so, healthcare providers

can help

 parents and children view treatment as a collaborative effort. (8)

    8. Maintain patient and family confidentiality. Sharing

information publicly

 about a patient will destroy any attempts to establish a trusting

relationship,

 and is therefore unacceptable. Don't talk about a child or family

members in a

 public area like a medication room, elevator, cafeteria, or nurses

station.

    Even if patients and families aren't present when you talk

about them, they

 could find out. Many parents of chronically ill children form

informal

 networks-- " You watch my child when I'm not here, and I'll watch

yours " --and if

 something is said, other parents will tell the absent parents what

they heard,

 thus leading them to distrust you.

    9. Don't judge parents. This may be especially difficult if

a parent

 complains about you or another nurse. Try to empathize instead of

judging them.

 What nurses may perceive as aggression may only be the parents'

attempt at

 vigilance and advocacy. Parents' vigilant behaviors include

constantly

 monitoring their child's condition, close attention to proper and

timely

 administration of prescribed medications and treatments, and careful

selection

 and oversight of anyone who interacts with their child. (9) Parents

may feel

 they have to advocate for their child because they believe no one

else will. In

 my experience, parents who are most vigilant about their child's

needs are the

 ones who nurses label as " difficult. "

    Rather than perpetuate that label, look at the facts behind

a complaint. I

 once cared for a 14-month-old child with cerebral palsy whose mother

was labeled

  " difficult. " She claimed her child was having episodes of apnea, but

none were

 witnessed in the hospital. No one believed the mother, and a

diagnosis of

 Munchausen syndrome by proxy was discussed.

    Eventually the results of a pneumogram showed numerous

oxygen desaturations

 and episodes of brachycardia and prolonged apnea. The mother was

young, not well

 educated, and showed a lack of judgment in her personal life--but

when it came

 to her daughter, she was quite vigilant and caring.

    If parents don't like a particular nurse, allow them to

voice their

 concerns, but don't allow them to split the staff. Even if you agree

with them,

 don't join parents in detailing the faults of a co-worker. You don't

have to

 defend the staff member; simply allow the parents to state their

opinions. If

 their complaints have merit, assure the parents that the appropriate

manager

 will look into their concerns.

    If this problem is ongoing, devise a written plan of care

for all nurses who

 care for the child to follow. Together the family and staff can

identify who

 will be the child's primary nurses, and the goals of care. So it can

be followed

 consistently and not misinterpreted, this written plan can be posted

in the

 patient's room.

10. Help arrange for continuity of care. If repeat hospitalizations will

be

 required for a particular child, ideally, your staff should develop a

core group

 of nurses who will be responsible for that child's care during each

admission.

 (10) If this isn't feasible, avoid having a new nurse assigned to the

child each

 day or shift. It's disruptive for the child, and parents will resent

having to

 repeat their child's history and caregiving techniques to an endless

procession

 of new nurses.

    If a number of different nurses are assigned to their child,

parents may

 feel nurses would rather not care for a chronically ill child. I will

never

 forget the parent of a child with cerebral palsy and a seizure

disorder who once

 said to me, " I'm sorry you got stuck with my child today. " I was

mortified to

 think that a mother actually felt this way. Looking at her child's

chart, I

 noticed that many different nurses had cared for her. To correct

this, we

 assigned a small group of nurses to care for this patient

consistently.

    11. Assess the family's social support and resources. This

is essential

 because social support is a critical buffer to reduce the stress

associated with

 a child's illness and hospitalization. (1) It also has a significant

effect on

 parents' coping skills following a child's hospitalization. (1)

Social support

 may include help from members of the extended family, neighbors,

friends, work

 associates, or members of the family's church.

    Don't assume that a family with relatives living in the area

necessarily has

 a strong support network Some families find that their extended

families aren't

 as supportive as they'd hoped. (9) In other cases, what relatives

consider

  " support " can be a source of additional stress on the parents of a

chronically

 ill child.

    In your assessment, ask parents how they are coping with

their child's

 illness. Be sure to evaluate their physical, emotional, and mental

health, as

 well as their level of functioning and ability to perform daily

activities. (1)

    Refer parents to appropriate healthcare resources. Social

workers should be

 involved with patients and families starting upon admission, as they

have

 resources available to them regarding home care options and other

services for

 which the family may be eligible. Make parents aware of community

organizations

 and support groups. (See box on page 33.)

    12. Consider the needs of the entire family. Many factors

affect how

 siblings respond to a brother or sister with a chronic illness. Their

age,

 gender, developmental level, and birth order, as well as the type of

illness,

 family dynamics, and degree to which the illness disrupts family life

all play a

 role. (11) Siblings may feel left out or become jealous of the

attention parents

 give their brother or sister, they may respond by being especially

good or by

 acting out. (12)

    When siblings visit your patient, go the extra mile to

acknowledge them. Say

  " hello, " and ask them their names. If possible, allow them to help

you care for

 their sibling. Let them draw a picture together to hang over their

sibling's

 bed. If they're young, give them a sticker, a pack of crackers, or an

ice cream,

 with the parents' permission.

    Few parents who give continuous care to a child with a

chronic condition

 have enough time and energy left over for the siblings. I recently

cared for a

 17-year-old girl with severe mental retardation and CP. Her mom

shared with me

 how she felt she had neglected her other two children over the years.

One day

 she thought of leaving the hospital for a few hours to complete some

 back-to-school shopping, and perhaps take her other children to a

movie. I

 encouraged her to do so. (She left me three cell phone numbers and

her exact

 itinerary for the day, and called me when she got home.)

    Working to form a relationship with parents and the rest of

the family is

 vital to understanding them and providing the support they need.

Based on my

 experiences, supporting these families will give you far more in

return than you

 can imagine. What you learn will help you grow not only as nurse, but

also as a

 person.

Becki

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