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Family-Centered Care : Family-Centered Care: A Case Study

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Page 1: Family-Centered Care : Family-Centered Care: A Case Study

JSPN Vol. 10, No. 2, April-June, 2005 93

Blackwell Publishing, Ltd.Oxford, UKJSPNJournal for Specialists in Pediatric Nursing1088-145X© 2004 by Nursecom, Inc.102

FAMILY-CENTERED CARE

Family-Centered Care: A Case Study

Family-Centered Care

Family-Centered Care: A Case Study

Bonnie E. KitchenColumn Editor: Bonnie Gance-Cleveland

Family-Centered Care

provides a forum for sharinginformation about basic components of caring for childrenand families, including respect, information sharing, collab-oration, family-to-family support, and confidence building

.

“My son has multiple complex problems and ourprevious hospitalizations have been nightmares;as a matter of fact the past experiences were sodifficult that I did not want my child admitted.But with a medically fragile child, this was ouronly option. Our recent stay was the best we haveexperienced in years . . . The needless frustrationand mistakes that the PNP saved for us was trulyamazing. She familiarized herself with my son’smedical history and condition and stayed on topof everything that was happening. She reported tophysicians as well as to us on a regular basis. Thelack of continuity of care is the most frustratingand scary thing that occurs for parents/caregiversof complex children. I am still in awe of howmuch the PNP improved our experience.”

Family-centered care is a unique approach to healthcare where families become collaborators with thehealthcare team to ensure the best possible care for theirchildren (Hanson, Johnson, Jeppson, Thomas, & Hall,1994). This approach recognizes the family’s strengthsand knowledge as well as demonstrates respect intheir ability as caregivers while supporting rather thansupplanting the family (Macnab, Thiessen, McLeod, &Hinton, 2000). Family-centered care is an ideal modelof care for a child who is admitted to the hospital;however, it is difficult to deliver effectively (Shields &Tanner, 2004). Very little is known about employingthese principles in practice (Garwick, Kohrman,Wolman, & Blum, 1998) and little attention has beenpaid to how these principles should be implementedby hospital staff to achieve optimal results. Asillustrated in this case study, an acute care pediatricnurse practitioner has an ideal role to actualize thefamily-centered care model.

The role of the pediatric nurse practitioner (PNP) inan acute care setting outside of an ICU is a relativelynew role. The PNP is trained to manage acutely illchildren, diagnose and analyze multiple sources ofinformation, prescribe appropriate treatments, andprovide guidance and teaching. Individualizationand holistic care are strengths the PNP can beexpected to bring to family-centered care. A casestudy of a chronically ill patient in a tertiary academicsetting reflects the use of the family-centered careapproach.

A.D. is a 12-year-old white male who was admitted to atertiary care center with an infected central line. An incisionand drainage was performed on the wound and blood andwound cultures were obtained, which were positive for

Staphylococcus aureus

. A.D. has an extensive past medicalhistory of Down syndrome, autism, behavioral problems,hypoventilation syndrome, pulmonary hypertension, poorswallowing with possible aspiration, frequent pneumonias,tracheomalacia, avascular necrosis of the left femoral head,chronic constipation, and insomnia. He is on bi-levelpositive airway pressure at night and oxygen as neededduring the day. A “do not resuscitate” order has been longstanding and has been approved by the hospital’s ethicscommittee

.

Hospital Course

Following hospital admission, A.D. had surgical removalof his central line, and IV antibiotics were prescribed for 14days. Twelve days after IV medications were initiated, A.D.inadvertently removed his peripherally inserted centralcatheter (PICC) line and was switched to oral antibioticsfor the remaining 2 days. Discharge instructions includeda follow-up appointment with his PCP within 48 hoursof discharge. The PNP caring for A.D. wrote her phonenumber and email address with instructions to call forconcerns or questions

.The application of family-centered care principles

to chronically ill patients and their families can bechallenging. These families are sometimes labeledby hospital staff as “difficult” and are subsequently

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Family-Centered Care: A Case Study

avoided. Rigid restrictions, lack of continuity, dissatis-faction with previous hospital team encounters, andpolicies that are more supportive of staff than offamilies are some realistic reasons for parental pre-conceptions and lack of trust in the healthcare team.

On A.D.’s first hospital day, his mother approachedthe PNP and informed her that many of her child’sprevious hospitalizations had failed to meet her expec-tations. Furthermore, she informed the PNP that A.D.was a unique child and that others before had failedto appreciate that. A description of how the PNP usedthe family-centered principles of collaboration, sharinginformation, demonstrating respect, and confidencebuilding to establish a trusting relationship are high-lighted in the succeeding discussions.

Collaboration

Family-centered care recognizes that both familiesand healthcare providers have expertise and resourcesthat are beneficial to the child’s care. The family’sparticipation in decision making is critical (Eckle &MacLean, 2001). Collaboration acknowledges thepivotal role of the family and demonstrates care thatsupports the family (Macnab et al., 2000).

The promotion of a partnership between A.D.’sparents and the healthcare team was paramount to asuccessful hospitalization. The PNP made multiplevisits each day to meet with the family to invite theiropinions in the plan of care. The family was an integralpart of the healthcare team, lessening the authoritari-

anism the leader of the healthcare team generallyrepresents (Griffin, 2003). The PNP recognized thefamily’s expertise when directing care and became thefamily’s ally.

The two treatment alternatives being considered werefor home IV antibiotic therapy or to have A.D. remainin the hospital for the entire length of the therapy.During A.D.’s hospital admission, his mother reportedthat she had planned on taking a much needed vacationas she had not been away from her role as caregiverin over three years. In collaboration among the PNP,the infectious disease physician, and the mother, thetreatment options were discussed in detail outliningthe pros and cons. As A.D. had failed one course ofantibiotics for this infection while receiving care athome, the decision was made to keep him in thehospital for the entire length of the therapy. In thiscollaborative manner, both A.D.’s medical conditionand treatment, the economics of his admission, andthe mother’s need for respite were addressed. A.D.’smother was able to go out of town for several dayswithout excessive concern for her son’s well-being.

Information Sharing

In an atmosphere of trust, each side of the partner-ship feels more at ease in voicing concerns, ideas, andareas to improve without fear of repercussions. Thistype of partnership has been equated with positive teamperformance, as well as improved quality of care (Ponte,Connor, DeMarco, & Price, 2004).

Table 1. Useful Websites

www.familycenteredcare.org Family-centered care information

www.ssa.gov Benefits for children with disabilitieswww.nichcy.org National information center for children with disabilitieswww.familyvoices.org Family advocacywww.familiesusa.org Family advocacywww.parentpals.com Family supportwww.nppsis.org National parent-to-parent support system

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A.D. had a staphylococcal bacteremia that hadspread from his chest wound. The family’s concerns ofhow this occurred, the reason for IV antibiotic therapy,the need for long-term IV access, and any possiblecomplications from medications were addressed indi-vidually by the PNP. Studies have demonstrated thatfamilies want to be involved in treatment decisions,know the available alternatives, and be informed of therisks of treatments or procedures. Because A.D.’s medicalcare was quite complex, the PNP managing his careconsulted with surgery, infectious disease, respiratorytherapy, occupational therapy, and physical therapyand relayed information back to the family. The PNPassisted the family by explaining the information given,as well as coordinating recommendations. This barrageof information can be overwhelming to families and acentral person to direct and interpret the informationcan be invaluable.

When conflicts arise in medical treatments and deci-sions, clinicians must find ways to resolve the issues.By developing a trusting relationship with the family,having open communication, and ensuring that thefamily is an active member of the healthcare team,coming to a positive resolution is an easier process.Once allied with the family of an ill child, the cliniciangains trust, saves time, and promotes the family’sdecision making. Trusting relationships are developedby being honest and sharing information, explainingprocedures and treatments, discussing availableoptions, and allowing family time to discuss theirconcerns.

Respect

In family-centered care, respect is demonstrated byacknowledging parents as the most important peoplein their child’s life (Johnson, 2000). This acknowledge-ment allows the parents to know that their knowledgeand experience matter. When healthcare providers failto appreciate the needs of the child and family, parentsfeel no one is listening to them (Garwick et al., 1998).At the beginning of A.D.’s hospitalization, his mother

commented on his need for structure secondary to hisbehavioral problems. She expressed that during pre-vious stays, A.D. had more behavioral outbursts thatshe attributed to an unfamiliar environment and adifferent therapeutic structure. In formulating his planof care, the times of the therapies and medicationswere scheduled at the same times A.D. received themat home. A.D.’s mother noted throughout his hospital-ization that these small details made a significantdifference.

When admitting children to the hospital, the PNPshould focus on home patterns, family practices, andreligious or cultural practices. Being sensitive to thehuman needs of patients and families is often what ismost important, and this traverses all cultures (Garwicket al., 1998).

Confidence Building

Parents with chronically ill, disabled children oftenfeel overwhelmed and report ineffective coping(Johnson, 2000). Hospitalized children have increasedcare needs that may continue after discharge. Parentalreports indicate how important it is to prepare them toprovide support to their child at home (Galvin et al.,2000).

The PNP needs to be familiar with the informationand techniques parents have been taught, as well asbeing knowledgeable about the illness pathology.Families are more comfortable and learn better if theyfeel confident that the provider is familiar with thecare needs of their child (Galvin et al., 2000). It isimportant to remember that each family has differentcoping styles and learning methods, and that parentsdiffer in the degree to which they want to be involved(Macnab et al., 2000). Discussing past activities canbuild on what the family already knows, demonstrateconfidence in their parental abilities, and enhancetreatment compliance after discharge (Galvin et al.,2000).

During A.D.’s hospitalization, time was spent dailydiscussing previous episodes similar to this illness, as

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Family-Centered Care: A Case Study

well as daily routines. Both parents listed their strengthsand weaknesses in A.D.’s home care or routine. Forinstance, the mother wanted the family to give medi-cations and perform respiratory treatments, but thefather was heavily medicated at night for his seizuredisorder. From this information, a joint decision wasmade to allow the father to perform the daytimeactivities and to awaken the mother for treatments atnight. Both A.D. and his parents were more comfortablewith this solution. The licensed staff observed themedication administration and respiratory therapiesto ensure accurate delivery and to provide suggestionsfor improving care.

A.D.’s parents were also encouraged to expresstheir concerns during the admission. Each concernwas addressed with the family and the staff in anon-confrontational manner, and positive changeswere made in A.D.’s daily care. For instance, hismother was leaving the hospital for several days andwas concerned about A.D.’s behavioral problems inconjunction with father’s nightly sedation. A non-licensed staff member was provided during the nighthours to observe A.D. allowing his mother to feelcomfortable in her absence.

Finally, resources should be given to the parents foruse after discharge. Many chronically ill children havemultiple services providing care. Appropriate dischargeinstructions include whom to call for information. Atthe time of A.D.’s discharge his family was given thePNP’s email address and phone number so they couldcontact her with any concerns. The PNP also madebiweekly phone calls to A.D.’s family after dischargeto ascertain their current status and whether theyneeded additional resources. As time ensued, thesephone calls became less frequent and both partiesnow feel free to contact each other with questions orconcerns.

Family-to-Family Support

Parents of children with similar diagnoses can sup-port one another. Obviously this type of support needs

to be initiated with anonymity until both participantsagree to the disclosure (Sodomka & Swanson, 2004).Although staff members work closely with parents,their views toward care are often very different fromparents’ views. Other families can discuss care withoutcreating a defensive atmosphere and can share ideasfrom similar situations. A.D.’s mother did not needsuch family-to-family support because her child’scondition has been long standing and she has managedeffectively. However, she was able to offer supportto other families with less experience during A.D.’sadmission.

At the end of A.D.’s hospitalization, both parentsthanked the PNP for the different and positive experi-ence. Nursing staff and management commented onthe difference in parental attitudes during this hospitalstay. During a previous hospitalization, the adminis-trative representative was called daily about parentalcomplaints and concerns. During this hospitalization,the parents never felt the necessity to have anyoneintercede on their behalf because the PNP was theiradvocate. A.D.’s mother wrote a letter of appreciationto the hospital’s chief executive officer and his parentsasked for the same PNP on A.D.’s next admission.

In conclusion, traditional health care in the acutecare setting does not always meet the needs of parentsand children. Rather, it can foster dependence on thehealthcare team by not allowing families to maintaintheir normal roles as parents and caregivers. Family-centered care is a philosophical approach to theplanning and delivery of care based on mutual respectand honest communication with patients and theirfamilies. In family-centered care, parents are respectedas qualified caregivers, able to collaborate with thehealthcare team to maximize resources and improvethe quality of care.

Bonnie E. Kitchen, RN, MNSc, PNP

Arkansas Children’s HospitalLittle Rock, AR

Author contact: [email protected], with a copy tothe Editor: [email protected]

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