Loading…
How individuals with phenylketonuria experience their illness: an age-related qualitative study
Background The aim of the study was to explore the illness experience of individuals affected by phenylketonuria (PKU) and its differences in different patient age groups. Methods A qualitative–interpretative methodology was used through in‐depth interviews. Textual data were explored using the pr...
Saved in:
| Published in: | Child : care, health & development health & development, 2010-07, Vol.36 (4), p.539-548 |
|---|---|
| Main Authors: | , , , , |
| Format: | Article |
| Language: | English |
| Subjects: | |
| Citations: | Items that this one cites Items that cite this one |
| Online Access: | Get full text |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| cited_by | cdi_FETCH-LOGICAL-c4930-40090e366896fdfe9cda254c59cda90e0675f38670068758b60db77a135ca3d63 |
|---|---|
| cites | cdi_FETCH-LOGICAL-c4930-40090e366896fdfe9cda254c59cda90e0675f38670068758b60db77a135ca3d63 |
| container_end_page | 548 |
| container_issue | 4 |
| container_start_page | 539 |
| container_title | Child : care, health & development |
| container_volume | 36 |
| creator | Vegni, E. Fiori, L. Riva, E. Giovannini, M. Moja, E. A. |
| description | Background The aim of the study was to explore the illness experience of individuals affected by phenylketonuria (PKU) and its differences in different patient age groups.
Methods A qualitative–interpretative methodology was used through in‐depth interviews. Textual data were explored using the principles of grounded theory.
Results Forty‐seven patients participated in the study, aged from 10 to >25 years old. The results suggested the age‐related PKU experience: (1) a paradox, either to feel normal but isolated from the social context, or to be different while participating in the convivial aspects of the social being; and (2) the need for education about the disease tailored to the individual and growing needs. Specific themes seem to characterize each age range.
Conclusions This study constitutes a first attempt at understanding PKU from a non‐medical‐biological perspective. |
| doi_str_mv | 10.1111/j.1365-2214.2009.01000.x |
| format | article |
| fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_839579961</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>2068068681</sourcerecordid><originalsourceid>FETCH-LOGICAL-c4930-40090e366896fdfe9cda254c59cda90e0675f38670068758b60db77a135ca3d63</originalsourceid><addsrcrecordid>eNqNkVGLEzEUhYMobl39CxL0wacZk8kkmQg-LEW3K4u-KIIvIZ3cselOZ7pJZtv--01sWUEQzUsu3O-cey8HIUxJSdN7uy4pE7yoKlqXFSGqJJQQUu4fodlD4zGaEUZ4QRtRnaFnIawTQkRNnqIzqiTjlSQzpBfjDrvBujtnJ9MHvHNxhbcrGA79DcRxmLwzGPZb8A6GFnBcgfPY9f0AIbzDZsDmJxQeehPB4tvk4aKJ7g5wiJM9PEdPumQLL07_Ofr28cPX-aK4_nJ5Nb-4LtpaMVLU6QgCTIhGic52oFprKl63PBepQ4TkHWuETBc0kjdLQexSSkMZbw2zgp2jN0ffrR9vJwhRb1xooe_NAOMUdMMUl0oJ-k9SMqZUTVX2fPUHuR4nP6QzNK-oIDWT2e713yDaSFGLtHqmmiPV-jEED53eercx_qAp0TlSvdY5OZ2T0zlS_StSvU_Sl6cB03ID9rfwlGEC3h-Bnevh8N_Gej5f5Crpi6PehQj7B73xN1pIJrn-_vkyT5M_PolKK3YPOAK8qg</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>1876460671</pqid></control><display><type>article</type><title>How individuals with phenylketonuria experience their illness: an age-related qualitative study</title><source>Applied Social Sciences Index & Abstracts (ASSIA)</source><source>Wiley-Blackwell Read & Publish Collection</source><creator>Vegni, E. ; Fiori, L. ; Riva, E. ; Giovannini, M. ; Moja, E. A.</creator><creatorcontrib>Vegni, E. ; Fiori, L. ; Riva, E. ; Giovannini, M. ; Moja, E. A.</creatorcontrib><description>Background The aim of the study was to explore the illness experience of individuals affected by phenylketonuria (PKU) and its differences in different patient age groups.
Methods A qualitative–interpretative methodology was used through in‐depth interviews. Textual data were explored using the principles of grounded theory.
Results Forty‐seven patients participated in the study, aged from 10 to >25 years old. The results suggested the age‐related PKU experience: (1) a paradox, either to feel normal but isolated from the social context, or to be different while participating in the convivial aspects of the social being; and (2) the need for education about the disease tailored to the individual and growing needs. Specific themes seem to characterize each age range.
Conclusions This study constitutes a first attempt at understanding PKU from a non‐medical‐biological perspective.</description><identifier>ISSN: 0305-1862</identifier><identifier>EISSN: 1365-2214</identifier><identifier>DOI: 10.1111/j.1365-2214.2009.01000.x</identifier><identifier>PMID: 19735270</identifier><identifier>CODEN: CCHDDH</identifier><language>eng</language><publisher>Oxford, UK: Blackwell Publishing Ltd</publisher><subject>Adaptation, Psychological ; Adolescent ; Adult ; Age ; Age differences ; Age Factors ; Attitude to Health ; attitudes ; Child ; Children & youth ; communication ; Feeding Behavior - psychology ; Female ; Genetic disorders ; Grounded theory ; Health Knowledge, Attitudes, Practice ; Humans ; Male ; Methodology ; Paradoxes ; Phenylketonuria ; Phenylketonurias - psychology ; qualitative approaches ; Qualitative Research ; Social context ; Social environment ; Studies ; Young Adult</subject><ispartof>Child : care, health & development, 2010-07, Vol.36 (4), p.539-548</ispartof><rights>2009 The Authors. Journal compilation © 2009 Blackwell Publishing Ltd</rights><rights>Copyright Blackwell Publishing Ltd. Jul 2010</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4930-40090e366896fdfe9cda254c59cda90e0675f38670068758b60db77a135ca3d63</citedby><cites>FETCH-LOGICAL-c4930-40090e366896fdfe9cda254c59cda90e0675f38670068758b60db77a135ca3d63</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,780,784,27924,27925,30999,31000</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/19735270$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Vegni, E.</creatorcontrib><creatorcontrib>Fiori, L.</creatorcontrib><creatorcontrib>Riva, E.</creatorcontrib><creatorcontrib>Giovannini, M.</creatorcontrib><creatorcontrib>Moja, E. A.</creatorcontrib><title>How individuals with phenylketonuria experience their illness: an age-related qualitative study</title><title>Child : care, health & development</title><addtitle>Child Care Health Dev</addtitle><description>Background The aim of the study was to explore the illness experience of individuals affected by phenylketonuria (PKU) and its differences in different patient age groups.
Methods A qualitative–interpretative methodology was used through in‐depth interviews. Textual data were explored using the principles of grounded theory.
Results Forty‐seven patients participated in the study, aged from 10 to >25 years old. The results suggested the age‐related PKU experience: (1) a paradox, either to feel normal but isolated from the social context, or to be different while participating in the convivial aspects of the social being; and (2) the need for education about the disease tailored to the individual and growing needs. Specific themes seem to characterize each age range.
Conclusions This study constitutes a first attempt at understanding PKU from a non‐medical‐biological perspective.</description><subject>Adaptation, Psychological</subject><subject>Adolescent</subject><subject>Adult</subject><subject>Age</subject><subject>Age differences</subject><subject>Age Factors</subject><subject>Attitude to Health</subject><subject>attitudes</subject><subject>Child</subject><subject>Children & youth</subject><subject>communication</subject><subject>Feeding Behavior - psychology</subject><subject>Female</subject><subject>Genetic disorders</subject><subject>Grounded theory</subject><subject>Health Knowledge, Attitudes, Practice</subject><subject>Humans</subject><subject>Male</subject><subject>Methodology</subject><subject>Paradoxes</subject><subject>Phenylketonuria</subject><subject>Phenylketonurias - psychology</subject><subject>qualitative approaches</subject><subject>Qualitative Research</subject><subject>Social context</subject><subject>Social environment</subject><subject>Studies</subject><subject>Young Adult</subject><issn>0305-1862</issn><issn>1365-2214</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2010</creationdate><recordtype>article</recordtype><sourceid>7QJ</sourceid><recordid>eNqNkVGLEzEUhYMobl39CxL0wacZk8kkmQg-LEW3K4u-KIIvIZ3cselOZ7pJZtv--01sWUEQzUsu3O-cey8HIUxJSdN7uy4pE7yoKlqXFSGqJJQQUu4fodlD4zGaEUZ4QRtRnaFnIawTQkRNnqIzqiTjlSQzpBfjDrvBujtnJ9MHvHNxhbcrGA79DcRxmLwzGPZb8A6GFnBcgfPY9f0AIbzDZsDmJxQeehPB4tvk4aKJ7g5wiJM9PEdPumQLL07_Ofr28cPX-aK4_nJ5Nb-4LtpaMVLU6QgCTIhGic52oFprKl63PBepQ4TkHWuETBc0kjdLQexSSkMZbw2zgp2jN0ffrR9vJwhRb1xooe_NAOMUdMMUl0oJ-k9SMqZUTVX2fPUHuR4nP6QzNK-oIDWT2e713yDaSFGLtHqmmiPV-jEED53eercx_qAp0TlSvdY5OZ2T0zlS_StSvU_Sl6cB03ID9rfwlGEC3h-Bnevh8N_Gej5f5Crpi6PehQj7B73xN1pIJrn-_vkyT5M_PolKK3YPOAK8qg</recordid><startdate>201007</startdate><enddate>201007</enddate><creator>Vegni, E.</creator><creator>Fiori, L.</creator><creator>Riva, E.</creator><creator>Giovannini, M.</creator><creator>Moja, E. A.</creator><general>Blackwell Publishing Ltd</general><scope>BSCLL</scope><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>7QJ</scope><scope>7X8</scope></search><sort><creationdate>201007</creationdate><title>How individuals with phenylketonuria experience their illness: an age-related qualitative study</title><author>Vegni, E. ; Fiori, L. ; Riva, E. ; Giovannini, M. ; Moja, E. A.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4930-40090e366896fdfe9cda254c59cda90e0675f38670068758b60db77a135ca3d63</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2010</creationdate><topic>Adaptation, Psychological</topic><topic>Adolescent</topic><topic>Adult</topic><topic>Age</topic><topic>Age differences</topic><topic>Age Factors</topic><topic>Attitude to Health</topic><topic>attitudes</topic><topic>Child</topic><topic>Children & youth</topic><topic>communication</topic><topic>Feeding Behavior - psychology</topic><topic>Female</topic><topic>Genetic disorders</topic><topic>Grounded theory</topic><topic>Health Knowledge, Attitudes, Practice</topic><topic>Humans</topic><topic>Male</topic><topic>Methodology</topic><topic>Paradoxes</topic><topic>Phenylketonuria</topic><topic>Phenylketonurias - psychology</topic><topic>qualitative approaches</topic><topic>Qualitative Research</topic><topic>Social context</topic><topic>Social environment</topic><topic>Studies</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Vegni, E.</creatorcontrib><creatorcontrib>Fiori, L.</creatorcontrib><creatorcontrib>Riva, E.</creatorcontrib><creatorcontrib>Giovannini, M.</creatorcontrib><creatorcontrib>Moja, E. A.</creatorcontrib><collection>Istex</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>MEDLINE - Academic</collection><jtitle>Child : care, health & development</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Vegni, E.</au><au>Fiori, L.</au><au>Riva, E.</au><au>Giovannini, M.</au><au>Moja, E. A.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>How individuals with phenylketonuria experience their illness: an age-related qualitative study</atitle><jtitle>Child : care, health & development</jtitle><addtitle>Child Care Health Dev</addtitle><date>2010-07</date><risdate>2010</risdate><volume>36</volume><issue>4</issue><spage>539</spage><epage>548</epage><pages>539-548</pages><issn>0305-1862</issn><eissn>1365-2214</eissn><coden>CCHDDH</coden><abstract>Background The aim of the study was to explore the illness experience of individuals affected by phenylketonuria (PKU) and its differences in different patient age groups.
Methods A qualitative–interpretative methodology was used through in‐depth interviews. Textual data were explored using the principles of grounded theory.
Results Forty‐seven patients participated in the study, aged from 10 to >25 years old. The results suggested the age‐related PKU experience: (1) a paradox, either to feel normal but isolated from the social context, or to be different while participating in the convivial aspects of the social being; and (2) the need for education about the disease tailored to the individual and growing needs. Specific themes seem to characterize each age range.
Conclusions This study constitutes a first attempt at understanding PKU from a non‐medical‐biological perspective.</abstract><cop>Oxford, UK</cop><pub>Blackwell Publishing Ltd</pub><pmid>19735270</pmid><doi>10.1111/j.1365-2214.2009.01000.x</doi><tpages>10</tpages></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0305-1862 |
| ispartof | Child : care, health & development, 2010-07, Vol.36 (4), p.539-548 |
| issn | 0305-1862 1365-2214 |
| language | eng |
| recordid | cdi_proquest_miscellaneous_839579961 |
| source | Applied Social Sciences Index & Abstracts (ASSIA); Wiley-Blackwell Read & Publish Collection |
| subjects | Adaptation, Psychological Adolescent Adult Age Age differences Age Factors Attitude to Health attitudes Child Children & youth communication Feeding Behavior - psychology Female Genetic disorders Grounded theory Health Knowledge, Attitudes, Practice Humans Male Methodology Paradoxes Phenylketonuria Phenylketonurias - psychology qualitative approaches Qualitative Research Social context Social environment Studies Young Adult |
| title | How individuals with phenylketonuria experience their illness: an age-related qualitative study |
| url | http://sfxeu10.hosted.exlibrisgroup.com/loughborough?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-01-05T13%3A05%3A28IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-proquest_cross&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=How%20individuals%20with%20phenylketonuria%20experience%20their%20illness:%20an%20age-related%20qualitative%20study&rft.jtitle=Child%20:%20care,%20health%20&%20development&rft.au=Vegni,%20E.&rft.date=2010-07&rft.volume=36&rft.issue=4&rft.spage=539&rft.epage=548&rft.pages=539-548&rft.issn=0305-1862&rft.eissn=1365-2214&rft.coden=CCHDDH&rft_id=info:doi/10.1111/j.1365-2214.2009.01000.x&rft_dat=%3Cproquest_cross%3E2068068681%3C/proquest_cross%3E%3Cgrp_id%3Ecdi_FETCH-LOGICAL-c4930-40090e366896fdfe9cda254c59cda90e0675f38670068758b60db77a135ca3d63%3C/grp_id%3E%3Coa%3E%3C/oa%3E%3Curl%3E%3C/url%3E&rft_id=info:oai/&rft_pqid=1876460671&rft_id=info:pmid/19735270&rfr_iscdi=true |