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Short Communication| Volume 12, ISSUE 5, P538-543, September 2013

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Self-efficacy: Empowering parents of children with cystic fibrosis

  • Catherine M. McDonald
    Correspondence
    Corresponding author. Tel.: +1 801 662 5314.
    Affiliations
    Intermountain Cystic Fibrosis Center, Pediatric Division, University of Utah Health Science Center, Primary Children's Medical Center, 100 North Mario Capecchi Drive, Salt Lake City, UT 84113, USA
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  • Diane Haberman
    Affiliations
    Intermountain Cystic Fibrosis Center, Pediatric Division, University of Utah Health Science Center, Primary Children's Medical Center, 100 North Mario Capecchi Drive, Salt Lake City, UT 84113, USA
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  • Natalie Brown
    Affiliations
    Intermountain Cystic Fibrosis Parent Advisory Council, 604 Vista View Lane, North Salt Lake, UT 84054, USA
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Open ArchivePublished:December 26, 2012DOI:https://doi.org/10.1016/j.jcf.2012.11.014

      Abstract

      Background

      Can parent engagement in the development and delivery of educational materials for cystic fibrosis (CF) promote increased self-efficacy and confidence in self-management skills? Standard therapies for a child with CF frequently involve pulmonary treatment, medications, and behavioral and nutritional interventions. Parents report that the prescribed CF care can be overwhelming. Previous research at this pediatric CF Center indicated the parental perception of the difficulty in managing CF-related nutrition therapy. Parents' nutrition knowledge was an initial target of this continuous quality improvement (CQI) project with a long-range aim of increasing children's median body mass index (BMI) percentiles for patients at this pediatric CF center.

      Methods

      The local CF Parent Advisory Council, CF parents and staff collaborated on this family-centered CQI project. A CF parent website with weekly email newsletters and a facebook page were developed and evolved with input from parents. Parental feedback was gathered through electronic surveys, written questionnaires, focus groups and informal interviews. A convenience sample of parents participated in pre- and post-intervention surveys to determine change in self-confidence in effectively managing their children's CF treatment regimens. Results were also compared with responses from a larger previous survey.

      Results

      Parental knowledge of nutrition facts and medical nutrition therapy for CF did not increase significantly over the course of the CQI project. Surveyed parents reported increased confidence in their self-management skills. Although mean BMI percentiles have increased at this center, they remain below the national average.

      Conclusions

      Parent-driven educational strategies provide an opportunity to promote reliable CF-related information in parent-preferred formats that enhance self-management skills in caring for children with CF. Parental confidence to follow CF center recommendations increased between 2004 and 2011. Although many factors may impact confidence, parent satisfaction with the creation of electronic resources and engagement in the CQI process were intangible, but important outcomes.

      Keywords

      1. Background

      An accredited, pediatric Cystic Fibrosis Center (CFC) and local CF Parent Advisory Council (PAC) collaborated on a continuous quality improvement (CQI) project to empower parents with knowledge, self-efficacy, and peer support to enhance the nutritional status of children with CF. The Intermountain CFC in Salt Lake City, Utah, serves approximately 250 children aged 18 years and younger (representing ~180 families) in a large catchment area in the western USA.
      Prior to this CQI project, the CFC identified improved growth as a center goal. The PAC prioritized the development of a website to: 1) connect and support parents with reliable, positive and current CF information and 2) promote self-efficacy. The CFC and PAC determined that a joint effort could target both groups' objectives.
      Optimal growth and nutrition status predict better lung function and longevity for children with CF [
      • Konstan M.W.
      • Butler S.M.
      • Wohl M.E.
      • Stoddard M.
      • Matousek R.
      • Wagener J.S.
      • et al.
      Growth and nutritional indexes in early life predict pulmonary function in cystic fibrosis.
      ,
      • Peterson M.L.
      • Jacobs D.R.
      • Milla C.E.
      Longitudinal changes in growth parameters are correlated with changes in pulmonary function in children with cystic fibrosis.
      ,
      • Zemel B.S.
      • Jawad A.F.
      • FitzSimmons S.C.
      • Stallings V.A.
      Longitudinal relationship among growth, nutritional status, and pulmonary function in children with cystic fibrosis: analysis of the Cystic Fibrosis Foundation National CF Patient Registry.
      ]. According to the 2007 Cystic Fibrosis Foundation (CFF) Patient Registry Report, patients at this CFC had a median body mass index percentile below the national average, 41.6 versus 47.3 [
      • Care Center Data
      Intermountain Cystic Fibrosis Center and University of Utah Health Sciences Center.
      ]. Although the CFC had focused on improving weight gain and growth by opening more clinic appointments, improved nutrition screening process, and educational handouts, progress remained slow [
      • Care Center Data
      Intermountain Cystic Fibrosis Center and University of Utah Health Sciences Center.
      ].
      The nutritional status of children with CF relies on parents' abilities to effectively manage dietary and behavioral issues [
      • Stallings V.A.
      • Stark L.
      • Robinson K.A.
      • Feranchak A.P.
      • Quinton H.
      • Clinical Practice Guidelines on Growth and Nutrition Subcommittee
      • et al.
      Evidence-based practice recommendations for nutrition-related management of children and adults with cystic fibrosis and pancreatic insufficiency: results of a systematic review.
      ]. Previous research at this center suggested opportunities for improvement in parents' knowledge and confidence in their ability to manage nutrition concerns for their children with CF [
      • McDonald C.M.
      • Christensen N.K.
      • Lingard C.
      • Peet K.A.
      • Walker S.
      Nutrition knowledge and confidence levels of parents of children with cystic fibrosis.
      ]. Parents reported more confidence in their abilities to manage tasks such as respiratory therapy, oral and inhaled medications, and minor illnesses at home than nutrition-related CF issues [
      • McDonald C.M.
      • Christensen N.K.
      • Lingard C.
      • Peet K.A.
      • Walker S.
      Nutrition knowledge and confidence levels of parents of children with cystic fibrosis.
      ]. Interviews with families suggested a perception that tasks tend to be more concrete and less emotional than management of nutrition-related issues such as weight gain, differing dietary recommendations for various family members, and behavioral issues around eating [
      • McDonald C.M.
      • Christensen N.K.
      • Lingard C.
      • Peet K.A.
      • Walker S.
      Nutrition knowledge and confidence levels of parents of children with cystic fibrosis.
      ].
      Self-management is essential to effective care of chronic illnesses, resulting in improved patient outcomes [
      • Coleman M.T.
      • Newton K.S.
      Supporting self-management in patients with chronic illness.
      ,
      • Lorig K.H.
      • Holman H.R.
      Self-management education: history, definition, outcomes, and mechanisms.
      ,
      • Battersby M.
      • Von Korff M.
      • Schaefer J.
      • Davis C.
      • Ludman E.
      • Greene S.M.
      • et al.
      Twelve evidence-based principles for implementing self-management support in primary care.
      ]. The promotion of self-efficacy extends beyond traditional knowledge-based education to encompass problem-solving skills. Successful self-managers apply knowledge to effectively resolve real-life situations that matter to the child and family. Effective self-management of a child's chronic disease extends beyond typical parenting skills to include symptom monitoring, treatments, medications, specialized nutrition, physical and psychosocial issues, and financial planning. Family-centered care and collaboration among healthcare providers and families are key in successful promotion of self-management [
      • American Academy of Pediatrics
      Committee on Hospital Care and Institute for Patient- and Family-Centered Care. Policy statement. Patient- and family centered care and the pediatrician's role.
      ].

      2. Methods

      The CFC dietitian (CMM) and social worker (DH) were non-voting CFC representatives to the PAC and acted as liaisons with the other CFC staff. CMM designed, conducted, and analyzed surveys of parents. A PAC member (NB) was responsible for the website development. PAC members (all parents of children with CF at the local CFC) participated in reviewing surveys, determining actions, and developing website content. Formal PAC meetings were conducted bimonthly with frequent phone and email communication between CFC and PAC. Institutional Review Board approval was obtained for this CQI research.
      The PAC used a nominative problem-solving process to identify parents' concerns regarding their management of their child's CF care. Participative research methods defined parents' perceived needs for CF education and their preferences for receiving the desired information.
      Feedback from CF parents was solicited throughout the project. Parents attending CF clinic were queried by the CFC dietitian for the strategies successful in resolving nutrition issues for their child that they would like to share with other parents. These strategies were posted weekly as a short “Tip of the Week” to the website and distributed to parents via email. Electronic and printed surveys, focus groups, and informal interviews were conducted to determine parents' preferences for information content and format. Table 1 describes a timeline of the project along with interval outcomes. Sections of the CQI were previously reported in abstract form [
      • McDonald C.M.
      • Haberman D.
      • Christensen N.K.
      CF parents' preferences for nutrition information and format.
      ,
      • McDonald C.M.
      • Haberman D.
      • Christensen N.K.
      • Brackner E.
      Quality improvement: the evolution of an electronic CF Parent Website and “CF Tip of the Week”.
      ,
      • McDonald C.M.
      • Hoopes O.R.
      • Brown N.
      Quality improvement: parents' changing preferences for CF information and social media.
      ].
      Table 1Summary of continuous quality improvement regarding CF information, responses from parents of children with CF, and outcomes.
      DateSurvey methodRespondents (n)QueryResponseOutcome
      Apr-08Focus group8How do you like to receive CF information?1) Email, 2) CF parent website, 3) written handouts in clinic, 4) written information mailed through postal service, 5) lectures, formal presentations, 6) other electronic (Facebook, Twitter)PAC used free shareware to design and launch local website. Weekly email newsletter initiated, “CF Nutrition Tip of the Week,” a short (1–2 paragraph) CF parent-generated suggestion for improving or simplifying CF care. Parents enrolled by submitting email addresses in CF clinic.
      What qualities do you value in CF information?1) Frequent, brief communications with concrete and age-specific suggestions

      2) Successful intervention strategies shared by other CF parents
      Apr-08Electronic questionnaire; multiple choice, ranking12Rank interest in CF-related nutrition topics1) CF-specific high calorie recipes, 2) cooking tips, 3) healthy habits for family, 4) meals on a budget, 5) how to get your child to eat.“CF Recipe of the Week” added to CF electronic newsletter
      Apr-08Written questionnaire; multiple choice, ranking33
      Jan-09External funding obtained for quality improvement to 1) Assess knowledge and confidence of parents of children with CF, 2) Develop parent-driven CF information, 3) Reassess parental knowledge and confidence after exposure to information
      Mar-09Written questionnaire — MWCFCQ, mailed27CF parental knowledge and confidence — Time 1See results in Table 2, Table 3, Table 4.
      May-09Upgraded PAC website launched. Weekly email newsletter migrated to PAC website.
      Jul-10Electronic questionnaire; multiple choice, ranking18Do “CF Tip of the Week” (“tips”) emails contain information that is useful for you?61% most or many “tips” are useful; 39% some "tips" are usefulWeekly email newsletter changed to "CF Tip of the Week" and included a wider variety of topics per parent interest.
      Rank interest in general CF topics1) Infection control, 2) Nutrition, 3) General resources, 4) (tied) Managing medications, Respiratory treatments/equipment, Recipes, 5) Transitioning to adult CF care
      Jun-11Written questionnaire — MWCFCQ, mailed21CF parental knowledge and confidence — Time 2See results in Table 1, Table 2, Table 3.
      Feb-11Electronic questionnaire; multiple choice, ranking28What is the electronic media used by CF parents at least weekly?96% Internet/website, 71% Facebook, 4% LinkedIn, 0% Twitter
      Would you use a local CF Facebook page?81% yes
      May-11Electronic questionnaire; multiple choice, ranking17What is preferred content on CF Facebook page?1) (tied) Parent discussion forum and CF-related events, 2) (tied) recipes and personal stories/photos, 3) CF management tipsPAC Facebook page established
      Mar-12Google analyticsUsage of electronic resources among CF parentsEmail newsletter recipients n=135. 123 active Facebook users; 82 “likes”
      A validated, written survey, the Mountain West CF Consortium Questionnaire (MWCFCQ), measured parents' nutrition knowledge and confidence in CF management. Results from 305 CF parents' responses to the multi-site (UT, CO, NM, AZ) MWCFCQ in 2004 were used as a baseline [
      • McDonald C.M.
      • Christensen N.K.
      • Lingard C.
      • Peet K.A.
      • Walker S.
      Nutrition knowledge and confidence levels of parents of children with cystic fibrosis.
      ]. A convenience sample of 30 parents (not PAC members) was recruited at CF clinic visits to complete pre- and post-intervention MWCFCQs. Knowledge was assessed with multiple choice questions in two domains: 1) Nutrient content of commonly-used foods, and 2) CF-related medical nutrition therapy (MNT). Confidence or self-efficacy was ranked in three different domains of CF care: 1) “CFC recommendations” – the quality of the CFC staff's recommendations and parents' ability to follow them, 2) “Tasks” – ability to manage CF tasks (e.g., pulmonary therapies and medications), and 3) “Nutrition” – ability to manage MNT and food-related behaviors. Examples of questions for each domain are, “How confident are you that you: 1) are able to follow all the recommendations from the CFC?” 2) “…can manage the respiratory treatments that have been prescribed for your child with CF?” and 3) “…can manage the weight gain for your child with CF to achieve the best growth possible?” A Likert-type scale allowed respondents to select from 0, “Not at all confident” to 10, “Completely confident.” One sample t tests were applied to the comparison of baseline to pre-intervention results and paired sample t tests were applied to the pre–post intervention comparisons (n=21).

      3. Results

      Through the nominative problem-solving process, the PAC identified parental issues to address: 1) feeling isolated due to infection control concerns, 2) being overwhelmed by CF care, 3) uncertainty about the reliability of myriad sources of CF information, and 4) for some families, physical and/or emotional distance from the CFC. The PAC determined that a reliable, local website could ameliorate these concerns.
      A summary of interim surveys with responses and outcomes is listed in Table 1. Over the course of this CQI project a CF parent website, weekly email newsletters (“Tips”) and a CF parent Facebook page were established and modified with parent and CFC staff input. Most recently, a mediashare site was added to house videotaped parent educational presentations and non-commercial CF demonstration videos (e.g., “How to clean nebulizers.”)

      3.1 CF parent knowledge on MWCFCQ

      Of the 30 parents who consented to participate in the mailed survey, 27 returned the pre-intervention MWCFCQ and 21 completed the post-intervention MWCFCQ 18 months later. Demographics for pre- and post-intervention respondents are compared with respondents to the 2004 MWCFCQ in Table 2. Fifteen of the 21 parents who returned both pre- and post-MWCFCQs had received the weekly “Tips.” Table 3 provides a comparison of respondents' knowledge of nutrient content of foods and CF-related MNT from the 2004 and pre-and post-intervention MWCFCQs. No significant differences were determined in pre-intervention versus post intervention knowledge of either domain. However, compared with results from the 2004 MWCFCQ, CF parent knowledge of CF-related MNT had increased significantly by the time of the pre-intervention survey and continued to increase through post-intervention.
      Table 2Demographic information for respondents to Mountain West Cystic Fibrosis Consortium Questionnaire (MWCFCQ) at baseline (2004), pre- and post-intervention and post-intervention for respondents who received “CF Nutrition Tip of the Week” emails (“Tips”).
      Respondent femaleHousehold size (number of persons in home)Annual household incomeHighest level of education completed
      N (%)Mean±SDMedianMedian
      MWCFCQ 2004

      (n=305)
      274 (89.8)4.3±1.4$60–70K1–3 years college or vocational training
      Pre-intervention

      (n=27)
      22 (81.5)4.7±1.6$50–60K4 yr college degree
      Post-intervention

      (n=21)
      18 (85.7)4.9±1.5$70–80K4 yr college degree
      Post-intervention parents who received “Tips”

      (n=15)
      13 (86.7)4.7±1.6$60–70K4 yr college degree
      Table 3Percent correct responses to Mountain West CF Consortium Questionnaire (MWCFCQ) Section 4) Nutrient Content of Commonly Used Foods, and 5) CF-Related Medical Nutrition Therapy.
      Mean±SDComparison with 2004 MWCFCQ responsesComparison between pre- and post-intervention MWCFCQ
      Sig.Sig.
      Nutrient Content (7 questions)
      2004 MWCFCQ (n=305)64.3±20.5
      Pre-intervention (n=27) MWCFCQ66.7±15.5.430
      Post-intervention (n=21) MWCFCQ72.1±16.0.024.41
      CF-Related Medical Nutrition Therapy (18 questions)
      2004 MWCFCQ (n=305)57.2±15.6
      Pre-intervention (n=27) MWCFCQ68.3±17.0.002
      Bonferoni correction requires p value<.0056 for significance.
      Post-intervention (n=21) MWCFCQ73.8±11.4.000
      Bonferoni correction requires p value<.0056 for significance.
      .51
      Total (25 questions)
      2004 MWCFCQ (n=305)59.1±14.1
      Pre-intervention (n=27) MWCFCQ67.9±13.3.002
      Bonferoni correction requires p value<.0056 for significance.
      Post-intervention (n=21) MWCFCQ73.3±9.5.000
      Bonferoni correction requires p value<.0056 for significance.
      .277
      low asterisk Bonferoni correction requires p value<.0056 for significance.

      3.2 CF parent confidence on MWCFCQ

      Respondents ranked their confidence in the three domains of CF care: 1) “CFC recommendations” 2) “Tasks”, and 3) “Nutrition” (Table 4). In all 3 domains and at each survey time, mean confidence levels were noted to be in the “very confident” to “completely confident” range. Compared with the 2004 MWCFCQ respondents; both pre- and post- were significantly more confident in CF Center recommendations and their own abilities to comply with recommendations, and post-respondents were more confident in daily CF medical management. Only confidence in CF nutrition increased significantly from the pre- to post-intervention survey.
      Table 4Respondents to Mountain West CF Consortium Questionnaire (MWCFCQ) self-reported levels of confidence (0=Not at all confident; 10=completely confident) in various areas of CF self-management: 1) Overall recommendations made by the CF Center, 2) Participant's ability to manage CF therapies and medications, 3) Participant's ability manage nutrition needs for CF, 4) total of the previous three sections.
      Comparison with 2004 MWCFCQ responsesComparison between pre-intervention and post-intervention MWCFCQ responses
      Mean±SDSig.Sig.
      • 1.
        CF Center recommendations


      (4 questions)
      2004 MWCFCQ (n=305)8.65±1.36
      Pre-intervention (n=27) MWCFCQ9.25±0.82.001
      Bonferoni correction requires p value<.0042 for significance.
      Post-intervention (n=21) MWCFCQ9.33±0.91.002
      Bonferoni correction requires p value<.0042 for significance.
      .538
      • 2.
        Daily CF medical management


      (6 questions)
      2004 MWCFCQ (n=305)8.64±1.24
      Pre-intervention (n=27) MWCFCQ8.49±1.07.483
      Post-intervention (n=21) MWCFCQ9.17±0.81.007
      Bonferoni correction requires p value<.0042 for significance.
      .084
      • 3.
        CF nutrition management


      (6 questions)
      2004 MWCFCQ (n=305)7.75±1.55
      Pre-intervention (n=27) MWCFCQ7.58±1.12.485
      Post-intervention (n=21) MWCFCQ8.31±0.98.017.001
      Bonferoni correction requires p value<.0042 for significance.
      Total (16 questions)
      2004 MWCFCQ (n=305)8.28±1.22
      Pre-intervention (n=27) MWCFCQ8.32±0.74.794
      Post-intervention (n=21) MWCFCQ8.88±0.70.001
      Bonferoni correction requires p value<.0042 for significance.
      .003
      Bonferoni correction requires p value<.0042 for significance.
      low asterisk Bonferoni correction requires p value<.0042 for significance.

      3.3 Body mass index percentile

      According to the 2011 CF Foundation registry report, the CFC mean BMI percentile has increased gradually over four years to 44.1 but remains below the national average (50.9) and the national goal of 50th percentile.

      4. Discussion

      This CQI project had a number of limitations. It was a single center study with a small number of participants, especially in the MWCFCQ. The 2004 MWCFCQ used as a baseline had a larger geographic area, smaller household size, and lower median level of education. Although MWCFCQs were mailed to both parents, respondents were overwhelmingly female. Because this was a CQI project, there was no control group; all CF parents had full access to printed or online materials throughout the project. Additionally, other CF resources became available concurrently and may have impacted parents' knowledge and confidence. Examples include CF parent education events conducted three times per year beginning in 2004 at this CFC and generally increased access to rapidly expanding CF information on the internet since 2004. All may have impacted MWCFCQ results.
      The core principles of patient- and family-centered care include collaboration among healthcare providers and families in CQI initiatives and peer-support programs [
      • American Academy of Pediatrics
      Committee on Hospital Care and Institute for Patient- and Family-Centered Care. Policy statement. Patient- and family centered care and the pediatrician's role.
      ]. Engagement of PAC members and other parents of children with CF in the development and dissemination of self-management strategies was a key factor in this CQI project.
      Although knowledge of nutritional care for CF did not change significantly among respondents from pre-to post-intervention, respondents' confidence in their abilities to manage nutrition concerns did. Respondents also became more confident in their abilities to manage overall CF care. This suggests that families are confident in what they are doing, but their actions may not be appropriate to achieve optimal growth and nutrition.
      The traditional instruction format during hectic CF clinic visits may not fully prepare parents to effectively manage all aspects of CF care. When parents do not understand or apply appropriate CF therapies, the child is at risk of poor nutrition status, compromised pulmonary status, and earlier complications of CF. Many CF parents reported struggling to incorporate large amounts of information from CF clinic into positive therapeutic regimens. Parents felt overwhelmed and insecure in attempts to implement self-management strategies, especially when faced with overpowering acute concerns. Parents received educational materials in CF clinic but not the problem-solving, decision-making, or confidence-building skills for day-to-day management of cystic fibrosis.
      A local CF parent website with email and facebook links enabled communication and provided current, reliable, and evidence-based CF information. The electronic formats encouraged parents to become active participants in the CQI process. Although increases in CF parents' knowledge of nutrition could not be demonstrated for the MWCFCQ, this may be related to the weekly “Tips” and other information focusing on practical problem solving (e.g. “Mary Smith suggests adding whipping cream to your child's yogurt. It adds calories without changing the flavor.”) rather than fact-based questions in the MWCFCQ (e.g., “Which of the following contains the most fat? A) whipping cream. B) yogurt, C) canned fruit?”).
      Participating parents reported intrinsic values including networking opportunities with other CF parents and feeling connected to a local, pediatric CF community. The group dynamic and electronic peer support network may be motivators for enhancing self-management skills. Asking parents to provide practical, actionable “Tips” based on their successes in addressing nutrition issues enabled positive reinforcement from CFC staff and other parents. Parents reported that the weekly email “Tips” provided helpful information and served as reminders to think about CF and problem-solving.
      At the conclusion of the CQI, parents indicated that they were still overwhelmed by CF care, but peer support and connections gave them more options for assistance in managing CF issues. The support and connections were viewed as beneficial and may have contributed to increased confidence. The PAC considered the project successful and plans to proceed with more CQI for further improvements. Given that the MWCFCQ results suggest that a parental knowledge deficit of CF nutrition still exists, other strategies such as extra time in CF clinic, presentations at CF parent education events, or additional visits for nutrition education should be explored.

      5. Conclusion

      Neither parents' nutrition knowledge nor children's median BMI percentiles were significantly impacted by this CQI. Parental confidence to follow CFC recommendations increased between 2004 and 2011. Many factors aside from this CQI factor into this increase. Increased parental confidence in their abilities to implement CFC recommendations may be associated with improved management of their children's chronic disease.
      CFC and PAC collaboration on a CQI project resulted in electronic resources to empower parents with knowledge, self-efficacy, and peer support to enhance the nutritional care of children with CF. Parent satisfaction with the creation of electronic resources and engagement in the process were intangible, but important outcomes.

      Funding

      This project was funded by a Cystic Fibrosis Foundation Quality Improvement grant.

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