Family-Centered Care: Do We Practice What We Preach?

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CLINICAL RESEARCH

Family-Centered Care: Do We Practice What We Preach? Mary F. Petersen, Jayne Cohen, and Virgil Parsons

Objective: To determine nurses’ perceptions and practices of identified elements of family-centered care. Design: Descriptive. Setting: Neonatal intensive care unit (NICU), pediatrics, and pediatric intensive care unit (PICU) in an acute care hospital. Participants: Sixty-two licensed nurses, 37 working in the NICU and 25 working in pediatrics or the PICU. Main Outcome Measures: Scores for the Necessary and Current scales of the Family-Centered Care Questionnaire. Results: Scores representing current nursing practice of family-centered care were significantly lower than those representing its necessity (p = .000). Nurses with 10 years or fewer of neonatal or pediatric experience scored significantly higher on both the total Necessary Scale (p = .02) and total Current Scale (p = .017) than did those with 11 years or more. Nurses who work in the NICU scored significantly lower on the total Necessary Scale (p = .013) than did nurses who work in pediatrics or PICU. Conclusions: Although nurses agree the identified elements of family-centered care are necessary, they do not consistently apply those elements in their everyday practice. Years of experience and clinical work setting influenced both perceptions and practices of family-centered care. JOGNN, 33, 421-427; 2004. DOI: 10.1177/0884217504266772 Keywords: Family-centered care—Nursing care—Neonatal intensive care unit—Pediatrics— Pediatric intensive care unit Accepted: May 2003

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Family-centered care, its definition, philosophy, principles, and benefits for promoting wellness and adjustment within the family have been studied extensively since the consumer revolution of the 1970s. The literature suggests the family-centered care delivery model improves satisfaction with the hospital experience, and parents who are informed and involved are more confident and competent caring for their sick children (Bradley & Wiggins, 1983; Fenwick, Barclay, & Schmied, 2001; O’Connor, Vietze, Sherrod, Sandler, & Altemeier, 1980; Pelkonen, Perala, & Vehvilaninen-Julkunen, 1998; Van Riper, 2001). Although there is little controversy that involving the family is essential, research indicates some nurses believe dealing with families interferes with care of the patient, induces job stress, or is simply not part of their job (Bratt, Broome, Kelber, & Lostocco, 2000; Brown & Ritchie, 1989; Clark & Carter, 2002; Fenwick et al., 2001; McGrath, 2001). This conflict in the literature suggests a discrepancy between what has been accepted as essential and what we actually execute in the practice of family-centered care. This study replicates research conducted by Bruce and Ritchie (1997) to explore nurses’ beliefs regarding the principles of family-centered care and their implementation into practice.

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discrepancy exists between what has been accepted as essential and what nurses actually execute in the practice of family-centered care.

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Review of Literature In the past three decades, many articles have been published describing the philosophy, advantages, and implementation of family-centered care (Ahmann, 1994; Bradley & Wiggins, 1983; Brown & Ritchie, 1989; Bruce & Ritchie, 1997; Capitulo & Silverberg, 2001; Cox, 1974; Fenwick et al., 2001; O’Connor et al., 1980; McGrath, 2001; McKlindon & Barnsteiner, 1999; Pelkonen et al., 1998; Ramos, 1992; Shelton, Jeppson, & Johnson, 1987; Van Riper, 2001; Wexler & Bowes, 1980). However, some believe the concept of family-centered care is still somewhat ambiguous, requiring further definition, including development of concrete standards and strategies for successful implementation of philosophy into practice (Bradley, 1996; Coyne, 1996; Hutchfield, 1999). Family-centered care is defined by the Association for the Care of Children’s Health (ACCH) as a philosophy of care delivery that recognizes and respects the crucial role of the family, supporting families by building on their strengths, encouraging them to make the best choices, and promoting normal patterns of living during their child’s illness and recovery (Johnson, Jeppson, & Redburn, 1992). In 1987, the ACCH identified eight elements of family-centered care (Shelton et al., 1987), which were articulated by C. Everett Koop in the Surgeon General’s Report: Children With Special Health Care Needs (U.S. Department of Health and Human Services, 1987). Since that time, the definition of family-centered care has evolved to include attention to social and cultural diversity of families (Johnson et al., 1992) and administrative and emotional support for staff (Bruce & Ritchie, 1997). Family-centered care has not only been identified as a best-practice standard for the care of sick children, but has been supported in the United States by legislative actions, such as the Maternal Child Health Block Grant Amendments in the Omnibus Budget and Reconciliation Act of 1989, the Individuals with Disabilities Education Act, the Developmental Disabilities Assistance and Bill of Rights Act, and the Mental Health Amendments of 1990 (Johnson et al., 1992). The benefits of family-centered care as a philosophy of service delivery reported in the literature are many. In practicing family-centered care, well-being is promoted by facilitating the adaptive process for hospitalized children and their families. Parent-provider communication is improved, as is satisfaction with care and parents’ confidence and competence in caring for their ill child (Ballweg, 2001; Fenwick et al., 2001; Lawhon, 2002; Van Riper, 2001). In addition, improved financial and quality outcomes are also cited as benefits of family-centered care by quantifying the costs, both dollar and human, avoided when families and providers collaborate in the care of the

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child (Als et al., 1994; Buehler, Als, Duffy, McAnulty, & Liederman, 1995; Van Riper, 2001). Also reported in the literature are many factors that influence the successful implementation of family-centered care, including nurses’ perceptions of the family’s role in the care of the hospitalized child, their relationships with parents, communication channels and styles, environmental constraints, and management support of staff (Bratt et al., 2000; Brown & Ritchie, 1989; Bruce & Ritchie, 1997; Fenwick et al., 2001). In 1997, Bruce and Ritchie studied the perceptions and practices of nurses working in a tertiary children’s hospital to identify the educational needs of nurses regarding family-centered care. The study was conceptually based on the premise that all of the elements of family-centered care identified by the ACCH (Shelton et al., 1987), with the addition of emotional support for staff, were necessary for family-centered care to be practiced effectively. The survey tool developed for that study queried nine identified elements of family-centered care: 1. Recognition that the family is constant in the child’s life, whereas service systems and personnel within those systems fluctuate. 2. Facilitating parent-professional collaboration at all levels of health care. 3. Recognizing family strengths and individuality, and respecting different methods of coping. 4. Sharing unbiased and complete information with parents about their child’s care on an ongoing basis in an appropriate and supportive manner. 5. Encouraging parent-to-parent support. 6. Understanding and incorporating the developmental needs of infants, children, adolescents, and their families into health care systems. 7. Implementing appropriate policies and programs that are comprehensive and provide emotional and financial support to meet the needs of families. 8. Ensuring the design of the health care delivery system is flexible, accessible, and responsive to family needs (Shelton et al., 1987, p. 1). 9. Implementing appropriate policies and programs that are comprehensive and provide emotional support to meet the needs of the staff (Family-Centered Care Committee, 1992). This study was conducted in an acute care facility with tertiary neonatal and pediatric units differing in size, services offered, and geographic location from the institution in the Bruce and Ritchie (1997) study. The goal of this replication study was to build upon the new knowledge explicated in the Bruce and Ritchie study and help define the path toward realization of the family-centered care philosophy in practice.

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Research Questions 1. How necessary do nurses perceive the identified elements of family-centered care are to the practice of family-centered care? 2. To what extent do nurses feel they practice the identified elements of family-centered care? 3. What are the relationships between nurses’ perceptions of the identified elements of family-centered care and the extent to which those elements are present in their practice? 4. Is there a relationship among the sample’s demographic variables, including age, experience, education, clinical setting, and clinical position, and nurses’ practice and perceptions of family-centered care?

Method The study used the survey tool created for the Bruce and Ritchie (1997) study, the Family-Centered Care Questionnaire (FCCQ). The FCCQ consists of 45 items distributed across nine subscales representing the elements of family-centered care as defined by the ACCH with the addition of staff support. The participants were directed to rank the items on a 5-point Likert-type scale representing their perception of how necessary each of the items are for family-centered care (Necessary Scale) and to what extent they are present in their current practice (Current Scale). Bruce and Ritchie used a panel of familycentered care content experts to establish validity of the survey tool. Internal consistency was tested using Cronbach’s alpha, with the reliability coefficients ranging from 0.5 to 0.8 for the subscales and 0.9 for the total scales. Test-retest reliability ranged from 0.6 to 0.8 for the Necessary subscales. Demographic information was also collected, both by Bruce and Ritchie (1997) and for this study, including age, years of experience in neonatal or pediatric nursing, highest level of nursing education obtained, clinical work setting (neonatal intensive care unit [NICU], pediatrics, or pediatric intensive care unit [PICU]), and clinical position (i.e., registered nurse, licensed vocational/practical nurse, nurse manager, or educator). Both descriptive (frequencies, means, and standard deviations) and inferential (t tests) statistical analyses were performed to compare scores for age, years of experience, highest level of education, and clinical work setting for each of the subscales within the primary scales (Necessary and Current) of the FCCQ. The t tests were also used to compare each of the nine subscales and the total scales across both the Necessary and Current scales. The level of significance was set at 0.05.

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TABLE 1

Sample Characteristics (N = 62) Characteristics Age 40 years and younger 41 years and older Nursing experience 10 years or fewer 11 years or more Nursing education Associate’s degree or high school diploma Bachelor’s or master’s degree Clinical setting Neonatal intensive care unit Pediatrics and pediatric intensive care unit

Frequency Percentage 26 35

41.9 56.5

30 32

48.4 51.6

28 33

45.1 53.2

37

59.7

25

40.3

Note. Frequencies do not sum to 62 and percentages do not sum to 100% because of missing data.

Sample After obtaining the appropriate institutional review board approval for human subjects, the survey was distributed via interoffice mail to all licensed nurses (i.e., registered nurses and vocational/practical nurses) currently employed in the NICU, pediatrics, and the PICU. The only nurses excluded were those who were on leave of absence or who had not yet completed orientation. A total of 114 surveys were distributed, 62 to nurses working in the NICU, 45 to nurses working in pediatrics and PICU, and 7 to exempt staff (managers and educators). Sixty-two were returned for an overall response rate of 54.3%. The sample was categorized by age, years of nursing experience, level of nursing education, and clinical setting (see Table 1). The sample breakdown by clinical position included 54 registered nurses but only 2 licensed vocational/practical nurses and 6 exempt staff. Therefore, clinical position was not included in the demographic analysis.

Results In this study, nurses working in the NICU, pediatrics, and PICU agreed overall that the identified elements of family-centered care are important to the delivery of familycentered care. The means of each of the nine Necessary

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TABLE 2

Necessary and Current Scales Necessary Element of Family-Centered Care

n

The family is constant Parent-professional collaboration Recognition of family individuality Sharing information Recognition of developmental needs Parent-to-parent support Emotional-financial support Design of the health care system Emotional support of staff Total scale

55 54 55 55 56 55 55 54 55 53

Mean

Current

Standard Deviation

4.15 3.69 4.53 4.51 3.98 4.04 4.40 4.20 4.23 37.34

0.69 0.66 0.42 0.56 0.65 0.50 0.48 0.57 0.56 3.85

n 62 60 61 61 61 61 62 60 60 58

Mean

Standard Deviation

3.85 3.18 3.88 3.38 3.06 3.53 3.83 3.25 3.25 31.19

0.62 0.64 0.67 0.67 0.82 0.62 0.54 0.74 0.83 4.75

Note. Sample size varies because of missing data on individual items. Range for the individual subscales is 1.00 to 5.00. Range for each total scale is 9.00 to 45.00.

TABLE 3

Comparing Current and Necessary Scales Element of Family-Centered Care Family is constant Parent-professional collaboration Recognition of family individuality Sharing information Developmental needs Parent-to-parent support Emotional-financial support Design of health care system Emotional support of staff Total scales

Mean –.342 –.594 –.689 –.827 –.996 –.561 –.596 –1.034 –1.059 –6.640

subscales were between 3.69 and 4.53 (range: 1.00 to 5.00, see Table 2). The nurses in the Bruce and Ritchie (1997) study had ratings ranging from 3.56 to 4.69 for each of the Necessary subscales. Nurses in this study rated each of the nine Current subscales between 3.06 and 3.88. Similarly, the nurses in the Bruce and Ritchie study rated the Current subscales between 2.94 and 3.82. Scores for each of the Current subscales were significantly lower than the scores for the Necessary subscales (p = .000), as were the scores for the total scales (see Table 3). These results concur with the findings of Bruce and Ritchie, suggesting that although nurses agree the identified elements of family-centered care are necessary, these elements are not reflected in their practice. Nurses in this study rated (a) recognition of family individuality, (b) sharing information, and (c) providing

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Standard Deviation 0.541 0.652 0.651 0.687 0.942 0.611 0.646 0.809 0.849 4.997

t

df

p

–4.695 –6.574 –7.844 –8.934 –7.834 –6.804 –6.832 –9.384 –9.169 –9.489

54 51 54 54 54 54 54 53 53 50

.000 .000 .000 .000 .000 .000 .000 .000 .000 .000

emotional and financial support as the elements most necessary for the practice of family-centered care. They rated (a) recognition of family individuality, (b) recognition of family as constant, and (c) providing emotional and financial support highest in their current practice (see Table 2). These findings are similar to those of Bruce and Ritchie, who found recognition of family individuality and providing emotional and financial support rated highest on both the Necessary and Current scales.

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verall, nurses agreed that the identified elements of family-centered care are important.

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Both studies found the greatest differences between the Necessary and Current scales in the same two of three areas: emotional support of staff and the design of the health care system. The nurses in this study reported emotional support of staff as having the greatest difference between the Necessary and Current scales, followed by the design of the health care system and recognition of developmental needs of families (see Table 3). The nurses in the Bruce and Ritchie (1997) study reported the greatest difference between the Necessary and Current scales in the areas of sharing information, design of the health care system, and emotional support of staff. Neither age nor level of nursing education produced statistically significant differences in the total Necessary or Current scales. Nurses with 10 or fewer years of experience in pediatric or neonatal nursing, however, rated both the Necessary and Current scales significantly higher than did the nurses with 11 or more years of experience (Necessary scale, mean difference = 2.44, t = 2.40, df = 51, p = .02; Current scale, mean difference = 2.93, t = 2.452, df = 56, p = .017). Nurses who work in the NICU rated the total Necessary scale lower than did the pediatric and PICU nurses (mean difference = –2.64, t = –2.58, df = 51, p = .013). However, there was no statistically significant difference in how nurses in the NICU versus the nurses in pediatrics and the PICU rated the Current scales. Study limitations included the use of a single institution in one state, sample size, and a self-report instrument. Although the response rate was good, the possibility of bias in those who chose to respond versus nonresponders cannot be entirely discounted.

Discussion Although the design of this study used the same survey tool as Bruce and Ritchie (1997), there were several demographic differences that could potentially influence comparison of the results. The location, size, and services provided at the study institutions differed significantly, as did the sample size and response rate. The response rate in this study was 54.3% (N = 62) versus 36% in the Bruce and Ritchie study (N = 147). Moreover, Bruce and Ritchie did not speak to the potential differences between perceptions of nurses working in pediatrics or the PICU and perceptions of those working in the NICU. In this study, years of experience seemed to influence the scores for both the Necessary and Current scales, with less experienced nurses rating significantly higher than those with more experience. This suggests the nurses with less experience felt the identified elements of familycentered care are more important to family-centered care and reported using them in practice more consistently

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than did the nurses with more experience. One possible explanation for this finding may be that nurses trained in the past decade received more focused education on family-centered care as the philosophy and concept has developed. Scores for the total Necessary scale were higher for pediatric and PICU nurses as compared to NICU nurses. This suggests the NICU nurses do not believe the identified elements of family-centered care to be as important as the nurses who work in pediatrics and PICU. There are several possible explanations for this difference in perception. One may be that the conceptual development, education, and implementation of family-centered care has been an emphasis in pediatrics for 30 years or more, whereas the literature discussing family-centered care in the NICU is more recent, with little published work from the mid to late 1990s, increasing in number since 2000. Some managers and staff in the NICU also noted, through anecdotal commentary on the survey, that babies are admitted directly to the NICU before they have had time to be integrated into the structure of the family. This is a different scenario than generally experienced in pediatrics. The amount of time NICU nurses spend with these fragile neonates and the relationships that develop over often prolonged lengths of hospitalization, before the child is able to assimilate into his or her own family, may pose a conflict to the implementation of family-centered care. Fenwick et al. (2001), through grounded theory analysis, found that “women [with infants in the NICU] perceived they gained access to their infant through nurses” (p. 52). NICU nurses assert their expertise and authority and act to control the relationships in a protective posture, inhibiting the mother’s ability to bond with her infant (Fenwick et al., 2001). In addition, the high degree of complex technology required to care for babies in the NICU, the intense focus on technology required by the NICU nurses, and the intimidating effects of technology on parents have been cited as negatively impacting the delivery of developmentally supportive familycentered care to neonates in the intensive care nursery (Gordin & Johnson, 1999; McGrath, 2000). Nurses in this study, as in the previous study (Bruce & Ritchie, 1997), indicated the identified elements of familycentered care are important but not consistently implemented in practice. Both studies found emotional support for staff and design of the health care system ranked in the top three areas, representing the greatest differences between the elements that are necessary for practice and those present in current practice. This also supports conclusions drawn by Bruce and Ritchie, who found through both study results and anecdotes that nurses felt “a lack of organizational guidance and direction, of recognition for professional contribution, of confidence in and sup-

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port for the professional autonomy of nurses, and of skills to integrate knowledge to perform family-centered care” (p. 221).

team, (d) survey of parents and family members, and (e) a presurvey/postsurvey design with the administration of an intervention addressing the findings of the preintervention survey.

Implications for Practice The findings of this study suggest a setting conducive to intervention. Nurses both understand and believe in the value of family-centered care yet cannot seem to execute the concepts when caring for children and their families. They identify the organizational barriers of health care system design and lack of emotional support for staff as having the biggest discrepancy between elements necessary for family-centered care and current practice. From an organizational perspective, it is not sufficient merely to endorse philosophically the concepts of family-centered care: resources must also be dedicated. Modifications to the physical environment may be necessary. Furnishings, equipment, and educational materials may need updating. Most important, both nurses and parents must be acknowledged and supported for their unique perspectives and abilities in the execution of family-centered care.

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he findings of this study suggest a setting conducive for intervention.

Nurses with less experience rated their perceptions and practices of family-centered care significantly higher than more experienced nurses, and NICU nurses’ perceptions of the family-centered care rated significantly lower than those of pediatric and PICU nurses. These findings suggest there should be continued educational opportunities related to the concepts and application of family-centered care. Simple in-service campaigns have not been enormously effective. Involving expert nurses and invested family members in the development of practical familycentered practice standards is required, and it appears we have a pool of nurses who have both the understanding and motivation to accomplish this very important task.

Suggestions for Future Research Although themes revealed by the results of this research are consistent with those of Bruce and Ritchie (1997), the study’s limitations hamper the ability to generalize the results. Suggestions for further research include (a) sampling across institutions and other areas of the country, (b) modification of the survey tool to include cultural issues related to family-centered care, (c) inclusion of other members of the multidisciplinary health care

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Hutchfield, K. (1999). Family-centered care: A concept analysis. Journal of Advanced Nursing, 29(5), 1178-1187. Johnson, B., Jeppson, E., & Redburn, L. (1992). Caring for children and families: Guidelines for hospitals. Bethesda, MD: Association for the Care of Children’s Health. Lawhon, G. (2002). Facilitation of parenting the premature infant within the newborn intensive care unit. Journal of Perinatal and Neonatal Nursing, 16(1), 71-82. McGrath, J. M. (2000). Developmentally supportive caregiving and technology in the NICU: Isolation or merger of intervention strategies? Journal of Perinatal and Neonatal Nursing, 14(3), 78-91. McGrath, J. M. (2001). Building relationships with families in the NICU: Exploring the guarded alliance. Journal of Perinatal and Neonatal Nursing, 15(3), 74-83. McKlindon, D., & Barnsteiner, J. H. (1999). Therapeutic relationships: Evolution of the Children’s Hospital of Philadelphia model. MCN, The American Journal of Maternal Child Nursing, 24(5), 237-243. O’Connor, J. C., Vietze, P. M., Sherrod, K. B., Sandler, H. M., & Altemeier, W. A. (1980). Reducing incidence of parenting inadequacy following rooming in. Pediatrics, 66(2), 176-182. Pelkonen, M., Perala, M., & Vehvilaninen-Julkunen, K. (1998). Participation of expectant mothers in decision making in maternity care: Results of a population-based survey. Journal of Advanced Nursing, 28(1), 21-29. Ramos, M. C. (1992). The nurse patient relationship: Themes and variations. Journal of Advanced Nursing, 17, 496506.

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Shelton, T. L., Jeppson, E. S., & Johnson, B. H. (1987). Familycentered care for children with special health care needs. Bethesda, MD: Association for the Care of Children’s Health. U.S. Department of Health and Human Services. (1987). Surgeon General’s report: Children with special health care needs (DHHS Publication No.HRS/D/MC87-2). Rockville, MD: Author. Van Riper, M. (2001). Family-provider relationships and wellbeing in families with preterm infants in the NICU. Heart & Lung: The Journal of Acute & Critical Care, 30(1), 7484. Wexler, P., & Bowes, C. A. (1980). Puerperium: Care in familycentered hospital settings. Clinical Obstetrics and Gynecology, 23(4), 1087-1091.

Mary F. Petersen, MS, RN, is the director of Maternal-Child Health at the Kaiser Foundation Hospital, Santa Clara, CA. Jayne Cohen, DNSc, RNC, is the director and a professor at the School of Nursing at San Jose State University. Virgil Parsons, DNSc, RN, is a professor in the School of Nursing at San Jose State University. Address for correspondence: Mary F. Petersen, MS, RN, Kaiser Foundation Hospital, Santa Clara, 900 Kiely Blvd, Santa Clara, CA 95051-5386; E-mail: [email protected].

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