How Do Youth with Cystic Fibrosis Perceive Their Readiness to Transition to Adult Healthcare Compared to Their Caregivers' Views?
To describe how perceived stages of change for self-care management skills varies by age in youth with cystic fibrosis in preparation for transition to adult healthcare, to compare caregiver perception of youth readiness for self-care, and age/frequency of transition discussion with provider. The Tr...
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| Veröffentlicht in: | Journal of pediatric nursing 2018-11, Vol.43, p.104-110 |
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| container_title | Journal of pediatric nursing |
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| creator | Lapp, Valerie Chase, Susan K. |
| description | To describe how perceived stages of change for self-care management skills varies by age in youth with cystic fibrosis in preparation for transition to adult healthcare, to compare caregiver perception of youth readiness for self-care, and age/frequency of transition discussion with provider.
The Transition Readiness Assessment Questionnaire and a modified version (TRAQ-C) for caregivers were used for data collection. Descriptive statistics, simple linear regression, and t-tests were employed.
Regression equations suggest that age predicts youth perception of self-care management skill in all five domains on the TRAQ (p ≤ .009). A paired t-test compared the overall TRAQ and TRAQ-C mean scores between dyads. Youth rated themselves significantly higher in perception of self-care skill management (m = 3.187, sd = 0.769) than caregivers (m = 2.490, sd = 0.788; t = 7.408, df = 51, p |
| doi_str_mv | 10.1016/j.pedn.2018.09.012 |
| format | Article |
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The Transition Readiness Assessment Questionnaire and a modified version (TRAQ-C) for caregivers were used for data collection. Descriptive statistics, simple linear regression, and t-tests were employed.
Regression equations suggest that age predicts youth perception of self-care management skill in all five domains on the TRAQ (p ≤ .009). A paired t-test compared the overall TRAQ and TRAQ-C mean scores between dyads. Youth rated themselves significantly higher in perception of self-care skill management (m = 3.187, sd = 0.769) than caregivers (m = 2.490, sd = 0.788; t = 7.408, df = 51, p < .001). Sixteen was the average age of transition discussion for both youth and caregiver. Reported frequency of discussion varied considerably.
Although increasing age predicts perception of self-care management, many youth age 18–22 were still only contemplating or starting to learn skills. Skill level perceptions between youth and caregiver differed, but scores from all self-care management domains followed a similar trend. Discussions with providers began later than guidelines recommend and were often not recognized as such by youth.
Results underscore the importance of beginning transition discussion and skill evaluation in youth with cystic fibrosis at an early age, incorporating caregivers' perception in the process.
•Many youth age 18–22 are still contemplating or starting to learn self-management skills.•“This has opened my eyes … how much we have to teach her!” (parent comment).•Parents had not considered transferring knowledge of certain skills to their child.•Starting transition discussion to adult healthcare at age 16 is too late.</description><identifier>ISSN: 0882-5963</identifier><identifier>EISSN: 1532-8449</identifier><identifier>DOI: 10.1016/j.pedn.2018.09.012</identifier><identifier>PMID: 30473151</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>Adolescent ; Adult ; Caregivers - education ; Caregivers - psychology ; Cross-Sectional Studies ; Cystic fibrosis ; Cystic Fibrosis - diagnosis ; Cystic Fibrosis - psychology ; Cystic Fibrosis - therapy ; Female ; Follow-Up Studies ; Humans ; Linear Models ; Male ; Nursing ; Patient Education as Topic - methods ; Perception ; Self Care - methods ; Self Report ; Self-care management ; Severity of Illness Index ; Surveys and Questionnaires ; Transition readiness ; Transition to adult care ; Transition to Adult Care - organization & administration ; United States ; Young Adult ; Youth</subject><ispartof>Journal of pediatric nursing, 2018-11, Vol.43, p.104-110</ispartof><rights>2018 Elsevier Inc.</rights><rights>Copyright © 2018 Elsevier Inc. All rights reserved.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c356t-e5dc1bb5e7b2b886d668bcaf61b13aed6c1c9297c5d35e2207f8b151707f76043</citedby><cites>FETCH-LOGICAL-c356t-e5dc1bb5e7b2b886d668bcaf61b13aed6c1c9297c5d35e2207f8b151707f76043</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.sciencedirect.com/science/article/pii/S0882596318301969$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>314,776,780,3537,27901,27902,65306</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/30473151$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Lapp, Valerie</creatorcontrib><creatorcontrib>Chase, Susan K.</creatorcontrib><title>How Do Youth with Cystic Fibrosis Perceive Their Readiness to Transition to Adult Healthcare Compared to Their Caregivers' Views?</title><title>Journal of pediatric nursing</title><addtitle>J Pediatr Nurs</addtitle><description>To describe how perceived stages of change for self-care management skills varies by age in youth with cystic fibrosis in preparation for transition to adult healthcare, to compare caregiver perception of youth readiness for self-care, and age/frequency of transition discussion with provider.
The Transition Readiness Assessment Questionnaire and a modified version (TRAQ-C) for caregivers were used for data collection. Descriptive statistics, simple linear regression, and t-tests were employed.
Regression equations suggest that age predicts youth perception of self-care management skill in all five domains on the TRAQ (p ≤ .009). A paired t-test compared the overall TRAQ and TRAQ-C mean scores between dyads. Youth rated themselves significantly higher in perception of self-care skill management (m = 3.187, sd = 0.769) than caregivers (m = 2.490, sd = 0.788; t = 7.408, df = 51, p < .001). Sixteen was the average age of transition discussion for both youth and caregiver. Reported frequency of discussion varied considerably.
Although increasing age predicts perception of self-care management, many youth age 18–22 were still only contemplating or starting to learn skills. Skill level perceptions between youth and caregiver differed, but scores from all self-care management domains followed a similar trend. Discussions with providers began later than guidelines recommend and were often not recognized as such by youth.
Results underscore the importance of beginning transition discussion and skill evaluation in youth with cystic fibrosis at an early age, incorporating caregivers' perception in the process.
•Many youth age 18–22 are still contemplating or starting to learn self-management skills.•“This has opened my eyes … how much we have to teach her!” (parent comment).•Parents had not considered transferring knowledge of certain skills to their child.•Starting transition discussion to adult healthcare at age 16 is too late.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Caregivers - education</subject><subject>Caregivers - psychology</subject><subject>Cross-Sectional Studies</subject><subject>Cystic fibrosis</subject><subject>Cystic Fibrosis - diagnosis</subject><subject>Cystic Fibrosis - psychology</subject><subject>Cystic Fibrosis - therapy</subject><subject>Female</subject><subject>Follow-Up Studies</subject><subject>Humans</subject><subject>Linear Models</subject><subject>Male</subject><subject>Nursing</subject><subject>Patient Education as Topic - methods</subject><subject>Perception</subject><subject>Self Care - methods</subject><subject>Self Report</subject><subject>Self-care management</subject><subject>Severity of Illness Index</subject><subject>Surveys and Questionnaires</subject><subject>Transition readiness</subject><subject>Transition to adult care</subject><subject>Transition to Adult Care - organization & administration</subject><subject>United States</subject><subject>Young Adult</subject><subject>Youth</subject><issn>0882-5963</issn><issn>1532-8449</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2018</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp9kF1rFDEUhoModq3-AS8kd3ozYz4mmQwIUkbbFQqKrIJXYZKcdbPMTrZJpksv_efNdquX3uTkwPO-cB6EXlNSU0Ll-229BzfVjFBVk64mlD1BCyo4q1TTdE_RgijFKtFJfoZepLQlhFLRds_RGSdNy6mgC_RnGQ74U8C_wpw3-ODL09-l7C2-9CaG5BP-BtGCvwW82oCP-DsMzk-QEs4Br-IwJZ99mI7bhZvHjJcwjHljhwi4D7t9me4BfUj3Zf1dymJ6i396OKSPL9Gz9TAmePU4z9GPy8-rflldf7360l9cV5YLmSsQzlJjBLSGGaWkk1IZO6wlNZQP4KSltmNda4XjAhgj7VqZcmJbPq0kDT9H7069-xhuZkhZ73yyMI7DBGFOmlGuSCMFUwVlJ9QWAynCWu-j3w3xTlOij-r1Vh_V66N6TTpd1JfQm8f-2ezA_Yv8dV2ADycAypW3HqJO1sNkwfkINmsX_P_67wGlWpXs</recordid><startdate>201811</startdate><enddate>201811</enddate><creator>Lapp, Valerie</creator><creator>Chase, Susan K.</creator><general>Elsevier Inc</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope></search><sort><creationdate>201811</creationdate><title>How Do Youth with Cystic Fibrosis Perceive Their Readiness to Transition to Adult Healthcare Compared to Their Caregivers' Views?</title><author>Lapp, Valerie ; Chase, Susan K.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c356t-e5dc1bb5e7b2b886d668bcaf61b13aed6c1c9297c5d35e2207f8b151707f76043</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2018</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Caregivers - education</topic><topic>Caregivers - psychology</topic><topic>Cross-Sectional Studies</topic><topic>Cystic fibrosis</topic><topic>Cystic Fibrosis - diagnosis</topic><topic>Cystic Fibrosis - psychology</topic><topic>Cystic Fibrosis - therapy</topic><topic>Female</topic><topic>Follow-Up Studies</topic><topic>Humans</topic><topic>Linear Models</topic><topic>Male</topic><topic>Nursing</topic><topic>Patient Education as Topic - methods</topic><topic>Perception</topic><topic>Self Care - methods</topic><topic>Self Report</topic><topic>Self-care management</topic><topic>Severity of Illness Index</topic><topic>Surveys and Questionnaires</topic><topic>Transition readiness</topic><topic>Transition to adult care</topic><topic>Transition to Adult Care - organization & administration</topic><topic>United States</topic><topic>Young Adult</topic><topic>Youth</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Lapp, Valerie</creatorcontrib><creatorcontrib>Chase, Susan K.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>Journal of pediatric nursing</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Lapp, Valerie</au><au>Chase, Susan K.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>How Do Youth with Cystic Fibrosis Perceive Their Readiness to Transition to Adult Healthcare Compared to Their Caregivers' Views?</atitle><jtitle>Journal of pediatric nursing</jtitle><addtitle>J Pediatr Nurs</addtitle><date>2018-11</date><risdate>2018</risdate><volume>43</volume><spage>104</spage><epage>110</epage><pages>104-110</pages><issn>0882-5963</issn><eissn>1532-8449</eissn><abstract>To describe how perceived stages of change for self-care management skills varies by age in youth with cystic fibrosis in preparation for transition to adult healthcare, to compare caregiver perception of youth readiness for self-care, and age/frequency of transition discussion with provider.
The Transition Readiness Assessment Questionnaire and a modified version (TRAQ-C) for caregivers were used for data collection. Descriptive statistics, simple linear regression, and t-tests were employed.
Regression equations suggest that age predicts youth perception of self-care management skill in all five domains on the TRAQ (p ≤ .009). A paired t-test compared the overall TRAQ and TRAQ-C mean scores between dyads. Youth rated themselves significantly higher in perception of self-care skill management (m = 3.187, sd = 0.769) than caregivers (m = 2.490, sd = 0.788; t = 7.408, df = 51, p < .001). Sixteen was the average age of transition discussion for both youth and caregiver. Reported frequency of discussion varied considerably.
Although increasing age predicts perception of self-care management, many youth age 18–22 were still only contemplating or starting to learn skills. Skill level perceptions between youth and caregiver differed, but scores from all self-care management domains followed a similar trend. Discussions with providers began later than guidelines recommend and were often not recognized as such by youth.
Results underscore the importance of beginning transition discussion and skill evaluation in youth with cystic fibrosis at an early age, incorporating caregivers' perception in the process.
•Many youth age 18–22 are still contemplating or starting to learn self-management skills.•“This has opened my eyes … how much we have to teach her!” (parent comment).•Parents had not considered transferring knowledge of certain skills to their child.•Starting transition discussion to adult healthcare at age 16 is too late.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>30473151</pmid><doi>10.1016/j.pedn.2018.09.012</doi><tpages>7</tpages></addata></record> |
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| subjects | Adolescent Adult Caregivers - education Caregivers - psychology Cross-Sectional Studies Cystic fibrosis Cystic Fibrosis - diagnosis Cystic Fibrosis - psychology Cystic Fibrosis - therapy Female Follow-Up Studies Humans Linear Models Male Nursing Patient Education as Topic - methods Perception Self Care - methods Self Report Self-care management Severity of Illness Index Surveys and Questionnaires Transition readiness Transition to adult care Transition to Adult Care - organization & administration United States Young Adult Youth |
| title | How Do Youth with Cystic Fibrosis Perceive Their Readiness to Transition to Adult Healthcare Compared to Their Caregivers' Views? |
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