Images of Life
Identifieur interne : 003D22 ( Istex/Corpus ); précédent : 003D21; suivant : 003D23Images of Life
Auteurs : Tammy B. Rampton ; Jessica L. Rosemann ; Aimee L. Latta ; Barbara L. Mandleco ; Susanne Olsen Roper ; Tina T. DychesSource :
- Journal of family nursing [ 1074-8407 ] ; 2007-11.
English descriptors
- KwdEn :
- Aitken wingate, Annual conference, Associate professor, Autism, Baker wang, Banister booth, Bender castro, Best friends, Bosnian youth, Brigham, Cappello, Child development, Child psychology, Chronic condition, Chronic conditions, Church activities, Collier collier, Conditions project, Congestive heart failure, Consumer research, Cwds, Cwds child, Developmental disabilities, Developmental disorders, Disability, Domestic animals, Dyches, Family group, Family life, Family member, Family members, Family nonpeople categories objects animals buildings, Family nursing, Family photographs, Family relations, Family subcategories, Female siblings, Field notes, Final categories, Gender, Gender differences, Greater proportion, Hagedorn, Hanna, Hanna jacobs, Higher percentage, Homeless children, Important symbols, Intermountain west, International journal, Interview data, Isenberg jalongo, Kaminsky dewey, Lassetter, Life experiences, Male siblings, Mandleco, Many snapshots, Mental retardation, Miller happell, More photographs, More responsibility, More snapshots, National council, Nonfamily, Nonpeople, Nonpeople category, Nonpeople photographs, Normal child, Nursing research, Nursing science, Older children, Older siblings, Olsen, Other children, Other family members, Other hand, Other siblings, Participant, Pediatric nursing, People categories family nonfamily family subcategories cwds siblings, People category, Photograph, Photography, Potts mandleco, Qualitative health research, Qualitative methods, Qualitative research, Radley taylor, Rampton, Range years, Recent publications, Research method, Riper, Rossiter sharpe, Self parents, Severe disabilities, Sibling, Sibling relationships, Siblings relationships, Significant differences, Snapshot, Special education, Susanne olsen roper, Syndrome, Undergraduate coordinator, Undergraduate students, Visual sociology, Young participants, Younger children.
- Teeft :
- Aitken wingate, Annual conference, Associate professor, Autism, Baker wang, Banister booth, Bender castro, Best friends, Bosnian youth, Brigham, Cappello, Child development, Child psychology, Chronic condition, Chronic conditions, Church activities, Collier collier, Conditions project, Congestive heart failure, Consumer research, Cwds, Cwds child, Developmental disabilities, Developmental disorders, Disability, Domestic animals, Dyches, Family group, Family life, Family member, Family members, Family nonpeople categories objects animals buildings, Family nursing, Family photographs, Family relations, Family subcategories, Female siblings, Field notes, Final categories, Gender, Gender differences, Greater proportion, Hagedorn, Hanna, Hanna jacobs, Higher percentage, Homeless children, Important symbols, Intermountain west, International journal, Interview data, Isenberg jalongo, Kaminsky dewey, Lassetter, Life experiences, Male siblings, Mandleco, Many snapshots, Mental retardation, Miller happell, More photographs, More responsibility, More snapshots, National council, Nonfamily, Nonpeople, Nonpeople category, Nonpeople photographs, Normal child, Nursing research, Nursing science, Older children, Older siblings, Olsen, Other children, Other family members, Other hand, Other siblings, Participant, Pediatric nursing, People categories family nonfamily family subcategories cwds siblings, People category, Photograph, Photography, Potts mandleco, Qualitative health research, Qualitative methods, Qualitative research, Radley taylor, Rampton, Range years, Recent publications, Research method, Riper, Rossiter sharpe, Self parents, Severe disabilities, Sibling, Sibling relationships, Siblings relationships, Significant differences, Snapshot, Special education, Susanne olsen roper, Syndrome, Undergraduate coordinator, Undergraduate students, Visual sociology, Young participants, Younger children.
Abstract
This qualitative, descriptive study used photography to capture important symbols in the lives of 16 siblings living in families raising a child with Down syndrome (CWDS). Content analysis revealed two categories: people/nonpeople. The people category included family members and friends, whereas the non-people category included objects, animals, and buildings. Similarities/differences also were noted according to age and gender. Seven- to 9-year-olds took more snapshots of themselves and their parents than did the other age groups; the 10-to 12-year-olds and 13- to 15-year-olds took more photographs of the CWDS than did the younger age group. Female siblings took more snapshots of their typically developing brothers/sisters, family members in mixed groups, and people not in their family than did male siblings. Male siblings took more photographs of their parents and themselves. Results validate the importance of gathering qualitative data from children and confirm the use of photography as one of these methods.
Url:
DOI: 10.1177/1074840707308580
Links to Exploration step
ISTEX:BB29504F6B3AFF9B438D056FDF22F42DA8B69653Le document en format XML
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Dyches</name><affiliation><mods:affiliation>Brigham Young University</mods:affiliation></affiliation><affiliation><mods:affiliation>Brigham Young University</mods:affiliation></affiliation></author></analytic><monogr></monogr><series><title level="j">Journal of family nursing</title><idno type="ISSN">1074-8407</idno><idno type="eISSN">1552-549X</idno><imprint><publisher>Sage Publications</publisher><pubPlace>Sage CA: Los Angeles, CA</pubPlace><date type="published" when="2007-11">2007-11</date><biblScope unit="volume">13</biblScope><biblScope unit="issue">4</biblScope><biblScope unit="page" from="420">420</biblScope><biblScope unit="page" to="442">442</biblScope></imprint><idno type="ISSN">1074-8407</idno></series></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">1074-8407</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Aitken wingate</term><term>Annual conference</term><term>Associate 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notes</term><term>Final categories</term><term>Gender</term><term>Gender differences</term><term>Greater proportion</term><term>Hagedorn</term><term>Hanna</term><term>Hanna jacobs</term><term>Higher percentage</term><term>Homeless children</term><term>Important symbols</term><term>Intermountain west</term><term>International journal</term><term>Interview data</term><term>Isenberg jalongo</term><term>Kaminsky dewey</term><term>Lassetter</term><term>Life experiences</term><term>Male siblings</term><term>Mandleco</term><term>Many snapshots</term><term>Mental retardation</term><term>Miller happell</term><term>More photographs</term><term>More responsibility</term><term>More snapshots</term><term>National council</term><term>Nonfamily</term><term>Nonpeople</term><term>Nonpeople category</term><term>Nonpeople photographs</term><term>Normal child</term><term>Nursing research</term><term>Nursing science</term><term>Older children</term><term>Older siblings</term><term>Olsen</term><term>Other 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sociology</term><term>Young participants</term><term>Younger children</term></keywords><keywords scheme="Teeft" xml:lang="en"><term>Aitken wingate</term><term>Annual conference</term><term>Associate professor</term><term>Autism</term><term>Baker wang</term><term>Banister booth</term><term>Bender castro</term><term>Best friends</term><term>Bosnian youth</term><term>Brigham</term><term>Cappello</term><term>Child development</term><term>Child psychology</term><term>Chronic condition</term><term>Chronic conditions</term><term>Church activities</term><term>Collier collier</term><term>Conditions project</term><term>Congestive heart failure</term><term>Consumer research</term><term>Cwds</term><term>Cwds child</term><term>Developmental disabilities</term><term>Developmental disorders</term><term>Disability</term><term>Domestic animals</term><term>Dyches</term><term>Family group</term><term>Family life</term><term>Family member</term><term>Family members</term><term>Family nonpeople categories objects animals buildings</term><term>Family nursing</term><term>Family photographs</term><term>Family relations</term><term>Family subcategories</term><term>Female siblings</term><term>Field notes</term><term>Final categories</term><term>Gender</term><term>Gender differences</term><term>Greater proportion</term><term>Hagedorn</term><term>Hanna</term><term>Hanna jacobs</term><term>Higher percentage</term><term>Homeless children</term><term>Important symbols</term><term>Intermountain west</term><term>International journal</term><term>Interview data</term><term>Isenberg jalongo</term><term>Kaminsky dewey</term><term>Lassetter</term><term>Life experiences</term><term>Male siblings</term><term>Mandleco</term><term>Many snapshots</term><term>Mental retardation</term><term>Miller happell</term><term>More photographs</term><term>More responsibility</term><term>More snapshots</term><term>National council</term><term>Nonfamily</term><term>Nonpeople</term><term>Nonpeople category</term><term>Nonpeople photographs</term><term>Normal child</term><term>Nursing research</term><term>Nursing science</term><term>Older children</term><term>Older siblings</term><term>Olsen</term><term>Other children</term><term>Other family members</term><term>Other hand</term><term>Other siblings</term><term>Participant</term><term>Pediatric nursing</term><term>People categories family nonfamily family subcategories cwds siblings</term><term>People category</term><term>Photograph</term><term>Photography</term><term>Potts mandleco</term><term>Qualitative health research</term><term>Qualitative methods</term><term>Qualitative research</term><term>Radley taylor</term><term>Rampton</term><term>Range years</term><term>Recent publications</term><term>Research method</term><term>Riper</term><term>Rossiter sharpe</term><term>Self parents</term><term>Severe disabilities</term><term>Sibling</term><term>Sibling relationships</term><term>Siblings relationships</term><term>Significant differences</term><term>Snapshot</term><term>Special education</term><term>Susanne olsen roper</term><term>Syndrome</term><term>Undergraduate coordinator</term><term>Undergraduate students</term><term>Visual sociology</term><term>Young participants</term><term>Younger children</term></keywords></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">This qualitative, descriptive study used photography to capture important symbols in the lives of 16 siblings living in families raising a child with Down syndrome (CWDS). Content analysis revealed two categories: people/nonpeople. The people category included family members and friends, whereas the non-people category included objects, animals, and buildings. Similarities/differences also were noted according to age and gender. Seven- to 9-year-olds took more snapshots of themselves and their parents than did the other age groups; the 10-to 12-year-olds and 13- to 15-year-olds took more photographs of the CWDS than did the younger age group. Female siblings took more snapshots of their typically developing brothers/sisters, family members in mixed groups, and people not in their family than did male siblings. Male siblings took more photographs of their parents and themselves. Results validate the importance of gathering qualitative data from children and confirm the use of photography as one of these methods.</div></front></TEI><istex><corpusName>sage</corpusName><keywords><teeft><json:string>sibling</json:string><json:string>cwds</json:string><json:string>snapshot</json:string><json:string>mandleco</json:string><json:string>dyches</json:string><json:string>nonpeople</json:string><json:string>family members</json:string><json:string>rampton</json:string><json:string>riper</json:string><json:string>brigham</json:string><json:string>nonfamily</json:string><json:string>hanna</json:string><json:string>cappello</json:string><json:string>olsen</json:string><json:string>family nursing</json:string><json:string>lassetter</json:string><json:string>female siblings</json:string><json:string>hagedorn</json:string><json:string>nonpeople category</json:string><json:string>developmental disabilities</json:string><json:string>more snapshots</json:string><json:string>male siblings</json:string><json:string>higher percentage</json:string><json:string>qualitative health research</json:string><json:string>nursing research</json:string><json:string>more photographs</json:string><json:string>disability</json:string><json:string>autism</json:string><json:string>banister booth</json:string><json:string>radley taylor</json:string><json:string>child development</json:string><json:string>hanna jacobs</json:string><json:string>other siblings</json:string><json:string>interview data</json:string><json:string>syndrome</json:string><json:string>qualitative methods</json:string><json:string>sibling relationships</json:string><json:string>young participants</json:string><json:string>family life</json:string><json:string>research method</json:string><json:string>many snapshots</json:string><json:string>baker wang</json:string><json:string>family relations</json:string><json:string>domestic animals</json:string><json:string>people category</json:string><json:string>family photographs</json:string><json:string>other family members</json:string><json:string>rossiter sharpe</json:string><json:string>other hand</json:string><json:string>family member</json:string><json:string>pediatric nursing</json:string><json:string>cwds child</json:string><json:string>family nonpeople categories objects animals buildings</json:string><json:string>aitken wingate</json:string><json:string>bosnian youth</json:string><json:string>recent publications</json:string><json:string>older siblings</json:string><json:string>self parents</json:string><json:string>intermountain west</json:string><json:string>people categories family nonfamily family subcategories cwds siblings</json:string><json:string>developmental disorders</json:string><json:string>severe disabilities</json:string><json:string>participant</json:string><json:string>gender</json:string><json:string>photograph</json:string><json:string>photography</json:string><json:string>isenberg jalongo</json:string><json:string>bender castro</json:string><json:string>homeless children</json:string><json:string>congestive heart failure</json:string><json:string>chronic conditions</json:string><json:string>chronic condition</json:string><json:string>miller happell</json:string><json:string>family subcategories</json:string><json:string>collier collier</json:string><json:string>special education</json:string><json:string>best friends</json:string><json:string>nonpeople photographs</json:string><json:string>significant differences</json:string><json:string>church activities</json:string><json:string>greater proportion</json:string><json:string>family group</json:string><json:string>normal child</json:string><json:string>life experiences</json:string><json:string>more responsibility</json:string><json:string>final categories</json:string><json:string>field notes</json:string><json:string>younger children</json:string><json:string>potts mandleco</json:string><json:string>older children</json:string><json:string>kaminsky dewey</json:string><json:string>mental retardation</json:string><json:string>qualitative research</json:string><json:string>consumer research</json:string><json:string>international journal</json:string><json:string>undergraduate coordinator</json:string><json:string>annual conference</json:string><json:string>national council</json:string><json:string>undergraduate students</json:string><json:string>conditions project</json:string><json:string>nursing science</json:string><json:string>gender differences</json:string><json:string>other children</json:string><json:string>important symbols</json:string><json:string>siblings relationships</json:string><json:string>child psychology</json:string><json:string>range years</json:string><json:string>visual sociology</json:string><json:string>susanne olsen roper</json:string><json:string>associate professor</json:string></teeft></keywords><author><json:item><name>Tammy B. Rampton</name><affiliations><json:string>Brigham Young University</json:string><json:string>Brigham Young University</json:string></affiliations></json:item><json:item><name>Jessica L. Rosemann</name><affiliations><json:string>Brigham Young University</json:string><json:string>Brigham Young University</json:string></affiliations></json:item><json:item><name>Aimee L. Latta</name><affiliations><json:string>Brigham Young University</json:string><json:string>Brigham Young University</json:string></affiliations></json:item><json:item><name>Barbara L. Mandleco</name><affiliations><json:null></json:null><json:string>E-mail: Barbara_Mandleco@byu.edu</json:string><json:string>Brigham Young University, Barbara_Mandleco@byu.edu</json:string></affiliations></json:item><json:item><name>Susanne Olsen Roper</name><affiliations><json:string>Brigham Young University</json:string><json:string>Brigham Young University</json:string></affiliations></json:item><json:item><name>Tina T. Dyches</name><affiliations><json:string>Brigham Young University</json:string><json:string>Brigham Young University</json:string></affiliations></json:item></author><subject><json:item><lang><json:string>eng</json:string></lang><value>Down syndrome</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>photography</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>childbearing/child rearing</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>family/participant group</value></json:item></subject><articleId><json:string>10.1177_1074840707308580</json:string></articleId><language><json:string>eng</json:string></language><originalGenre><json:string>research-article</json:string></originalGenre><abstract>This qualitative, descriptive study used photography to capture important symbols in the lives of 16 siblings living in families raising a child with Down syndrome (CWDS). Content analysis revealed two categories: people/nonpeople. The people category included family members and friends, whereas the non-people category included objects, animals, and buildings. Similarities/differences also were noted according to age and gender. Seven- to 9-year-olds took more snapshots of themselves and their parents than did the other age groups; the 10-to 12-year-olds and 13- to 15-year-olds took more photographs of the CWDS than did the younger age group. Female siblings took more snapshots of their typically developing brothers/sisters, family members in mixed groups, and people not in their family than did male siblings. Male siblings took more photographs of their parents and themselves. 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University</affiliation><affiliation>Brigham Young University</affiliation></author><author xml:id="author-0001"><persName><forename type="first">Jessica L.</forename><surname>Rosemann</surname></persName><affiliation>Brigham Young University</affiliation><affiliation>Brigham Young University</affiliation></author><author xml:id="author-0002"><persName><forename type="first">Aimee L.</forename><surname>Latta</surname></persName><affiliation>Brigham Young University</affiliation><affiliation>Brigham Young University</affiliation></author><author xml:id="author-0003"><persName><forename type="first">Barbara L.</forename><surname>Mandleco</surname></persName><email>Barbara_Mandleco@byu.edu</email><affiliation></affiliation><affiliation>Brigham Young University, Barbara_Mandleco@byu.edu</affiliation></author><author xml:id="author-0004"><persName><forename type="first">Susanne</forename><surname>Olsen Roper</surname></persName><affiliation>Brigham Young University</affiliation><affiliation>Brigham Young University</affiliation></author><author xml:id="author-0005"><persName><forename type="first">Tina T.</forename><surname>Dyches</surname></persName><affiliation>Brigham Young University</affiliation><affiliation>Brigham Young University</affiliation></author><idno type="istex">BB29504F6B3AFF9B438D056FDF22F42DA8B69653</idno><idno type="ark">ark:/67375/M70-K761XSNN-6</idno><idno type="DOI">10.1177/1074840707308580</idno><idno type="article-id">10.1177_1074840707308580</idno></analytic><monogr><title level="j">Journal of family nursing</title><idno type="pISSN">1074-8407</idno><idno type="eISSN">1552-549X</idno><idno type="publisher-id">JFN</idno><idno type="PublisherID-hwp">spjfn</idno><imprint><publisher>Sage Publications</publisher><pubPlace>Sage CA: Los Angeles, CA</pubPlace><date type="published" when="2007-11"></date><biblScope unit="volume">13</biblScope><biblScope unit="issue">4</biblScope><biblScope unit="page" from="420">420</biblScope><biblScope unit="page" to="442">442</biblScope></imprint></monogr></biblStruct></sourceDesc></fileDesc><profileDesc><creation><date>2007</date></creation><langUsage><language ident="en">en</language></langUsage><abstract xml:lang="en"><p>This qualitative, descriptive study used photography to capture important symbols in the lives of 16 siblings living in families raising a child with Down syndrome (CWDS). Content analysis revealed two categories: people/nonpeople. The people category included family members and friends, whereas the non-people category included objects, animals, and buildings. Similarities/differences also were noted according to age and gender. Seven- to 9-year-olds took more snapshots of themselves and their parents than did the other age groups; the 10-to 12-year-olds and 13- to 15-year-olds took more photographs of the CWDS than did the younger age group. Female siblings took more snapshots of their typically developing brothers/sisters, family members in mixed groups, and people not in their family than did male siblings. Male siblings took more photographs of their parents and themselves. Results validate the importance of gathering qualitative data from children and confirm the use of photography as one of these methods.</p></abstract><textClass><keywords scheme="keyword"><list><head>keywords</head><item><term>Down syndrome</term></item><item><term>photography</term></item><item><term>childbearing/child rearing</term></item><item><term>family/participant group</term></item></list></keywords></textClass></profileDesc><revisionDesc><change when="2007-11">Published</change></revisionDesc></teiHeader></istex:fulltextTEI><json:item><extension>txt</extension><original>false</original><mimetype>text/plain</mimetype><uri>https://api.istex.fr/document/BB29504F6B3AFF9B438D056FDF22F42DA8B69653/fulltext/txt</uri></json:item></fulltext><metadata><istex:metadataXml wicri:clean="corpus sage not found" wicri:toSee="no header"><istex:xmlDeclaration>version="1.0" encoding="UTF-8"</istex:xmlDeclaration><istex:docType PUBLIC="-//NLM//DTD Journal Publishing DTD v2.3 20070202//EN" URI="journalpublishing.dtd" name="istex:docType"></istex:docType><istex:document><article article-type="research-article" dtd-version="2.3" xml:lang="EN"><front><journal-meta><journal-id journal-id-type="hwp">spjfn</journal-id><journal-id journal-id-type="publisher-id">JFN</journal-id><journal-title>Journal of Family Nursing</journal-title><issn pub-type="ppub">1074-8407</issn><publisher><publisher-name>Sage Publications</publisher-name><publisher-loc>Sage CA: Los Angeles, CA</publisher-loc></publisher></journal-meta><article-meta><article-id pub-id-type="doi">10.1177/1074840707308580</article-id><article-id pub-id-type="publisher-id">10.1177_1074840707308580</article-id><article-categories><subj-group subj-group-type="heading"><subject>Articles</subject></subj-group></article-categories><title-group><article-title>Images of Life</article-title><subtitle>Siblings of Children With Down Syndrome</subtitle></title-group><contrib-group><contrib contrib-type="author" xlink:type="simple"><name name-style="western"><surname>Rampton</surname><given-names>Tammy B.</given-names></name><aff>Brigham Young University</aff></contrib><contrib contrib-type="author" xlink:type="simple"><name name-style="western"><surname>Rosemann</surname><given-names>Jessica L.</given-names></name><aff>Brigham Young University</aff></contrib><contrib contrib-type="author" xlink:type="simple"><name name-style="western"><surname>Latta</surname><given-names>Aimee L.</given-names></name><aff>Brigham Young University</aff></contrib><contrib contrib-type="author" xlink:type="simple"><name name-style="western"><surname>Mandleco</surname><given-names>Barbara L.</given-names></name><aff>Brigham Young University, <email xlink:type="simple">Barbara_Mandleco@byu.edu</email></aff></contrib><contrib contrib-type="author" xlink:type="simple"><name name-style="western"><surname>Olsen Roper</surname><given-names>Susanne</given-names></name><aff>Brigham Young University</aff></contrib><contrib contrib-type="author" xlink:type="simple"><name name-style="western"><surname>Dyches</surname><given-names>Tina T.</given-names></name><aff>Brigham Young University</aff></contrib></contrib-group><pub-date pub-type="ppub"><month>11</month><year>2007</year></pub-date><volume>13</volume><issue>4</issue><fpage>420</fpage><lpage>442</lpage><abstract><p>This qualitative, descriptive study used photography to capture important symbols in the lives of 16 siblings living in families raising a child with Down syndrome (CWDS). Content analysis revealed two categories: people/nonpeople. The people category included family members and friends, whereas the non-people category included objects, animals, and buildings. Similarities/differences also were noted according to age and gender. Seven- to 9-year-olds took more snapshots of themselves and their parents than did the other age groups; the 10-to 12-year-olds and 13- to 15-year-olds took more photographs of the CWDS than did the younger age group. Female siblings took more snapshots of their typically developing brothers/sisters, family members in mixed groups, and people not in their family than did male siblings. Male siblings took more photographs of their parents and themselves. Results validate the importance of gathering qualitative data from children and confirm the use of photography as one of these methods.</p></abstract><kwd-group><kwd>Down syndrome</kwd>
<kwd>photography</kwd>
<kwd>childbearing/child rearing</kwd>
<kwd>family/participant group</kwd></kwd-group><custom-meta-wrap><custom-meta xlink:type="simple"><meta-name>sagemeta-type</meta-name><meta-value>Journal Article</meta-value></custom-meta><custom-meta xlink:type="simple"><meta-name>search-text</meta-name><meta-value>420
Images
of LifeSiblings
of Children With Down Syndrome
SAGE Publications, Inc.200710.1177/1074840707308580
Tammy B.Rampton
RN, BS
Brigham Young University
Jessica L.Rosemann
RN, BS
Brigham Young University
Aimee L.Latta
RN, BS
Brigham Young University
Barbara L.Mandleco
RN, PhD
Brigham Young University, Barbara_Mandleco@byu.edu
SusanneOlsen Roper
PhD
Brigham Young University
Tina T.Dyches
EdD
Brigham Young University
This qualitative, descriptive
study used photography to capture important symbols in the lives of 16 siblings
living in families raising a child with Down syndrome (CWDS). Content analysis
revealed two categories: people/nonpeople. The people category included family
members and friends, whereas the non-people category included objects, animals,
and buildings. Similarities/differences also were noted according to age
and gender. Seven- to 9-year-olds took more snapshots of themselves and their
parents than did the other age groups; the 10-to 12-year-olds and 13- to 15-year-olds
took more photographs of the CWDS than did the younger age group. Female
siblings took more snapshots of their typically developing brothers/sisters,
family members in mixed groups, and people not in their family than did male
siblings. Male siblings took more photographs of their parents and themselves.
Results validate the importance of gathering qualitative data from children
and confirm the use of photography as one of these methods.
Down syndrome
photography
childbearing/child rearing
family/participant group
Authors'
Note: This project was funded by the College of Nursing, the Family Studies
Center, the Office of Research and Creativity, and the Marjorie Pay Hinckley
Chair at Brigham Young University, Provo, Utah. Ramptom, Latta, and Rosemann
worked as research assistants on the Families Adapting to Disability/Chronic
Conditions Project while they were undergraduate students at Brigham Young
University, College of Nursing. Mandleco, Roper, and Dyches are principle
investigators on the Families Adapting to Disability/Chronic Conditions Project.
Address all correspondence to Barbara L. Mandleco, RN, PhD, Professor and
Undergraduate Coordinator, Brigham Young University, College of Nursing, 474
SWKT, Provo, UT 84602;
421
onsiderable
evidence suggests that living in a family raising a child Cwith Down syndrome
(CWDS) can be a source of stress when com- pared to living in a family raising
typically developing children (Hauser- Cram, Warfield, Shonkoff, & Krauss,
2001; Pelchat, Lefebvre, & Perreault, 2003). This may be because families
raising children with Down syndrome (DS) not only face daily stressors and
challenges similar to those experi- enced by families raising typically developing
children but they also face unique responsibilities and challenges related
to the diagnosis of DS itself (Van Riper, 2000). Indeed, because of these
unique responsibilities and challenges, raising a CWDS can affect the welfare
and well-being of all family members, espe- cially siblings. For example,
there are times when the needs of the CWDS may take priority over the needs
of the siblings and other family members (Van Riper, 2000). Because many times
more of the parents' attention, time, energy, and resources is focused on
the CWDS than on the typically devel- oping sibling, one might expect the
childhood experience of the sibling to be influenced either positively or
negatively by the situation (Randall & Parker, 1999). Positive effects
on siblings include increased understanding, tolerance, and compassion toward
others; appreciation of their own good health (Rossiter & Sharpe, 2001; Van Riper, 2000); altruism; and independence (Fleitas, 2000). On the other
hand, negative aspects of living with a CWDS include higher levels of depression,
loneliness, embarrassment, jealousy, anx- iety, and aggression, as well as
lower perceived self-competence when com- pared to siblings of children who
do not have a disability (Fleitas, 2000; Rossiter & Sharpe, 2001; Van
Riper, 2000). Indeed, the experiences of being a sibling of a CWDS have implications
for research and examining the siblings' perceptions of their experiences
is important. Even though qualitative research may be one of the best methods
of cap- turing information about sibling experiences, other methods have been
used in past research. For example, primary informants in most studies related
to families raising children with disabilities have been mothers, fathers,
and teachers (Hanson, 2003; Hastings, 2003; Leiter, Krauss, Anderson, & Wells, 2004; Mandleco, Olsen, Dyches, & Marshall, 2003; Pelchat et al.,
2003). Consequently, the data often have focused on adult perceptions of children's
social skills and peer relations rather than their experiences related to
living with a brother or sister with a disability (Hastings, 2003; Mandleco
et al., 2003; Pilowsky, Yirmiya, Doopelt, Gross-Tsur, & Shalev, 2004; Verté, Roeyers, & Buysse, 2003). Even though collecting such data is informative,
a wide body of information may be missed because these data do not come directly
from siblings themselves (Sorensen, 1993).
422
However,
even when information has been obtained from siblings of children with disabilities,
there may be some limitations (Birch, Warren, Patterson, & Van Riper,
1998). First, siblings may be asked to complete ques- tionnaires created by
adults or participate in interviews conducted by adults (Bågenholm & Gillberg,
1991; Kaminsky & Dewey, 2002; Pilowsky et al., 2004; Rivers & Stoneman,
2003; Verté et al., 2003). This may be inade- quate or inappropriate if the
siblings do not fully understand the informa- tion requested due to their
developmental level (Docherty & Sandelowski, 1999; Sorensen, 1993). Second,
they also may feel intimidated by adults asking the questions (Cappello, 2001).
Indeed, a method needs to be used that allows siblings to freely express their
thoughts and feelings without interference from adults (Sorensen, 1991, 1993).
In addition, they should be allowed to actively participate in data collection
so they can effectively relate their experiences (Banister & Booth, 2006).
Recently, qualitative methods, including written journals, spontaneous drawings,
and sentence completion lists, have been used to gather data from young participants
(Cox, Marshall, Mandleco, & Olsen, 2003; Olsen et al., 1999; Sorensen,
1993). In addition, photography has come to the forefront as another method
for obtaining data from this population (Banister & Booth, 2006; Dyches,
Cichella, Olsen, & Mandleco, 2004; Mandleco et al., 2005; Moss, 2001).
Photography has been called a mirror of reality (Cappello, 2001) and is one
way to document life (Sontag, 1977) and communicate about life experiences
(Magilvy, Congdon, Nelson, & Craig, 1992). In fact, photography has been
used as a research method with a variety of populations in anthropology, sociology,
education, special education, and nursing (Baker & Wang, 2006; Banister
& Booth, 2006; Cappello, 2001; Collier & Collier, 1986; Dyches et
al., 2004; Einarsdottir, 2005; G. Miller & Happell, 2006; Lassetter, Mandleco,
Olsen, & Dyches, 2007; Radley & Taylor, 2003; Sontag, 1977). Specifically,
photography has been used to learn about perceptions of health from veterans
(Flaherty, 2003), adolescents with cancer (Hanna & Jacobs, 1993), and
adolescents with diabetes (Hanna, Jacobs, & Guthrie, 1995). In addition,
photography has explored what it is like to have a chronic condition using
college students with disabilities (Glover-Graf, 2000) and children with diabetes
and severe asthma (Clark, 2001) as participants. Parents raising children
with chronic conditions and disabilities (Hagedorn, 1990; Lassetter et al.,
2007; Marshall et al., 1995) and infants with congestive heart failure (Higgins
& Highley, 1986) have pho- tographed their perceptions of life. Photography
also has been used with home- less children (Percy, 1995), school-age children
(Banister & Booth, 2006; Cappello, 2001; Moss, 2001; Newman, Woodcock,
& Dunham, 2006),
423
first-grade
students (Orellana & Hernandez, 1999), middle-class children (Aitken & Wingate, 1993), siblings of children with autism (Mandleco et al., 2005),
Bosnian youth (Berman, Ford-Gilboe, Moutrey, & Cekic, 2001), and children
with developmental disabilities (Dyches et al., 2004) and mobility impairments
(Aitken & Wingate, 1993) to illustrate what was important or special to
them. In addition, Latina women used cameras to capture what was risky in
their environment (Bender & Castro, 2003) and adult medical and surgical
patients used cameras to capture impressions of their hospital experiences
(Radley & Taylor, 2003). Finally, photography has been used with adults
diagnosed with schizophrenia to illustrate their view of hope (G. Miller & Happell, 2006); community residents to identify family, maternal, and child
concerns (Wang & Pies, 2004); adults to docu- ment their experiences living
with chronic pain (Baker & Wang, 2006); and elderly women to depict how
they perceived letting go of a loved one who recently passed on (Kruse, 2004).
Photographs also can improve communication between young partici- pants and
adult interviewers (Preskill, 1995). This is because structured research questions
may be intimidating (Hanna et al., 1995), whereas pho- tography helps create
a comfortable atmosphere, often resulting in verbal expressions of thoughts
and feelings that otherwise may not surface, and assists investigators to
understand human experiences (Aitken & Wingate, 1993; Glover-Graf, 2000; Hagedorn, 1994; Hanna & Jacobs, 1993). Photography also enhances self-awareness
(Glover-Graf, 2000; Hagedorn, 1990) and allows participants' voices to be
heard (Bender & Castro, 2003; Heisley & Levy, 1991; Radley & Taylor,
2003). Finally, investigators can learn how participants perceive their life
experiences, especially when snapshots are discussed and explained (Cappello,
2001; Dyches et al. 2004; Hagedorn, 1994). Talking about photographs (photo
elicitation) is indeed a useful approach investigating the way people see
their world (Baker & Wang, 2006; Cappello, 2001; Radley & Taylor,
2003) and is a common way to use photography as a qualitative method (Collier
& Collier, 1986; Preskill, 1995; Secondulfa, 1997). It is also a way of
generating data from data (Cappello, 2001) because the information gathered
as participants talk about their photographs also becomes data. Therefore,
the purposes of this study were to use photography to answer the following
questions: What is important or significant to siblings of CWDS, as identified
in their photographs?
424
Why
are the photographs taken important or significant to siblings of CWDS? Are
there differences in the photographs taken by siblings of CWDS accord- ing
to age and gender? Method Participants Sixteen (6 male, 10 female) siblings
of CWDS whose families were liv- ing in a large metropolitan area in the Intermountain
West participated. (The Intermountain West is the inland area from the Sierra
Nevada and Cascades mountains on the west to the Rocky Mountains on the east
and from Northern New Mexico and Arizona on the south to Southern Canada on
the north.). Families were recruited through early intervention programs,
special education classes in public schools, and by word of mouth. The mean
age of the siblings was 10 years, 7 months (range = 7-15 years), and only
one sibling per family who was older and closest in age to the CWDS participated.
The mean age of the CWDS was 7 years, 7 months (range = 1-12 years). All but
one participant lived in two-parent homes and most families were raising at
least two other children. In addition, all but one par- ticipant (Cuban-Vietnamese
origin) were Caucasian. Fathers had completed an average of 15.07 years of
education and mothers had completed an aver- age of 15.13 years of education.
More than half of the families earned more than $50,000, and most mothers
worked part time (less than 20 hours per week). Procedure After receiving
Institutional Review Board approval, investigators met with participating
families to obtain parental consent and child assent. Siblings were given
an automatic 35-mm disposable camera with built in flash containing 24 to
27 color exposures and were asked to take snapshots that illustrated what
was important in their life (people, places, and things). Directions on using
the cameras were provided as needed. At the end of 2 weeks, cameras were retrieved
and interviews set up to talk privately with the siblings about the photographs.
The audiotaped interviews were con- ducted in the sibling's home, away from
other family members. As each photograph was shown to the sibling, the interviewer
followed an interview
425
Figure
1 Example of a Photo of CWDS Taken by the Sibling
guide
that asked the sibling to identify the photograph and then freely talk about
why the image was important. Even though prompts were used by the interviewer
as needed, siblings were encouraged to talk about their photo- graphs as independently
as possible. Interviews lasted up to 30 minutes each depending on how much
information the sibling provided about each snapshot. Field notes were taken
during the interview. The interviews were transcribed verbatim. Qualitative
Analysis Investigators individually sorted the photographs before meeting
together to verify and compare their analyses. Initially, photographs were
sorted through open coding to identify the initial themes before patterns
were collapsed, categories created, and themes identified. Rigor and trust-
worthiness of the data were assured using methods described by Denzin and
Lincoln (2000). Final categories were then determined and verified by
426
investigators
skilled in qualitative analysis. After final categories were iden- tified,
the transcripts were analyzed using qualitative methodology for common themes
related to why that category/subcategory of photograph was important to the
sibling. Field notes were used to clarify or explain the interview data as
needed. Quantitative Analysis The number and percentage of photographs taken
in each theme, category, and subcategory were calculated. In addition, the
number and percentage of pho- tographs each sibling took in each theme/category/subcategory
were determined. Sibling age and gender differences in the number and percentage
of photographs taken also were identified and chi-square analyses were conducted
to determine if differences were significant. For the analyses that examined
age differences, the siblings were divided into three age groups: 7- to 9-year-olds; 10- to 12-year-olds; and 13- to 15-year-olds. The age ranges for each group
are based on both Piaget's cognitive stage theory and Vygotsky's sociocultural
theory of development (P. H. Miller, 2002). Results Participants took a total
of 379 photographs; 371 were usable (98%). Photographs were considered usable
if the sibling was able to identify the image (photograph was not blurry,
no finger obstructed the view). Two major themes emerged from the content
analyses: people and nonpeople; however, most of the photographs contained
people (N = 289, 78%). Refer to Table 1 for the number and percentage of photographs
taken in each category/subcategory, the number and percentage of siblings
who took pho- tographs, and the range of percentages of photographs taken
by each sib- ling who took photographs. Photographs Containing People In the
people category, most of the 289 photographs were of family members (85%).
Every sibling took photographs of his or her family and many took more than
one photograph. Examination of the interview data revealed that siblings considered
their family to be important because they loved them, helped them, and did
activities together. For example, when asked why a snapshot containing various
members of his family
427
Table
1 Analysis of Photographs
Note:
CWDS = child with Down syndrome. was important, one 9-year-old boy replied, “I
like my family because if I didn't have them then I probably wouldn't be here
right now . . . and I love them a lot.” Another 9-year-old male sibling
said, “It's of my fam- ily, and I took it because they always help me
when I'm in trouble.” Finally, a 10-year-old boy said, “We just
. . . we always play together and stuff (snapshot of cousin).” The most
commonly photographed family member was the CWDS; almost half (47%) of the
photographs of family members were of the CWDS, and all siblings took at least
one picture of their brother or sister with DS. Two siblings took all of their
photographs of the CWDS. When talking about photographs of the CWDS, siblings
either mentioned why the CWDS was important in their lives or described characteristics
of the CWDS. For example, one 9-year-old brother said, “That's my little
brother . . . he helps me understand things . . . like I don't look at people
that need, like handicaps, the same.” Another 9-year-old boy said, “Without
him I wouldn't know a lot of things, and I wouldn't be able to go to a lot
of things like Sibshops . . . and without him, I don't know what I'd do.”
428
Almost
half of the siblings described characteristics of the CWDS in their interviews,
and all characteristics were positive: “He likes to go down and visit
my mom when someone's babysitting him and just sit with her and just listen”; “He
loves playing on the piano”; “She likes to give and receive things
from other people”; “[She] really likes to look at books”; “She
likes to talk at dinner . . . she likes playing dress up with Mom's shirt
. . . she puts them [teddy bears] on the stairs to teach them and we can't
get past them to walk up the stairs”; “I like that he's always
so happy.” The second most commonly photographed family members were
other siblings (23% of family photos). Eleven siblings (69%) took snapshots
of their typically developing brothers and sisters. In the interviews, siblings
described their brothers and sisters as friends, playmates, and examples.
One 10-year-old female, who took several snapshots of her typically devel-
oping brothers, said, That's my [brother], he's . . . every morning we usually
go in and play with [my other brother] and like [my brother] was pulling him
and he would fly up, and he was just laughing his head off. He thought it
was so funny. When asked why the brothers/sisters in the photographs were
important, one teenage male sibling said, “He likes to spend time with
her [CWDS].” Another teenage male sibling said, “Because he sets
a good example.” Seven siblings (44%) took snapshots of themselves,
with one sibling taking nine photographs of himself. Seven siblings (44%)
also took pho- tographs of their parents, but more than half of the photographs
(68%) were taken by two siblings. Only three siblings (19%) took photographs
of their extended family. In the people category, approximately 15% of the
photographs were not family members. Half of the siblings took snapshots in
this category but one sibling took almost one third of her photographs of
nonfamily. Nonfamily individuals who were photographed were peers and adults
(teachers, librar- ian, crossing guard, lady at church). Interview data suggested
that these people were photographed because siblings enjoyed being with these
indi- viduals or they were helpful. For example, when asked why these people
were important in the lives of these siblings, one 13-year-old sister said, “That's
my friend . . . she's my best friend . . . [my friends] . . . they're the
only ones that I can really be weird with.” A 9-year-old brother said, “We
play together at recess and I've never been bored on a recess since unless
he was absent.” One 7-year-old sister took photographs of several adults
and, when asked why they were important, said,
429
[Crossing
guard] because she's real fun . . . she likes to hang out with all the kids
when she's not crossing them; [Librarian] because she always helps me pick
out real good books; [Police man] and I took a picture because they keep us
safe; [Lady from church] she's like been a grandma to me . . . that's why
she's important to me; [Art teacher] because she's a lot of fun. . . . She
let us play with clay when the electricity is not working; [Classroom teacher]
why it's important to me is without a teacher you couldn't learn. One 7-year-old
sister said, “This is my minister . . . and why she's impor- tant to
me is because I can learn about my religion.” Photographs Not Containing
People The nonpeople category was divided into objects, animals, and buildings.
Twelve children (75%) took photographs of nonpeople (N = 82). Half of these
siblings took snapshots categorized as objects; however, more than half of
these photographs (54%) were taken by just two siblings. Photos of animals
(27%) and buildings (23%) made up the other half of the nonpeople category.
Snapshots of objects portrayed items of importance to the sibling, such as
toys, electronics (CD, stereo), outdoor scenes (sky, flowers, backyard), and
dec- orations (pictures, crafts). Objects also represented the siblings' various
accom- plishments and interests, such as a model car, a soccer uniform, or
a book. In one interview, a 13-year-old boy described his interest in reading
books: I like books because they give me something when I'm really bored,
like when there's nothing to do, like when I can't play Nintendo, and I can't
go outside, and none of my friends can play, and I've done all my homework,
I've watched all the shows I can. So, I decided to read books. Interviews
with the siblings also revealed that some objects may symbolize significant
people or events in their lives. For example, a 10-year-old female described
her attachment to one of her toys by stating, “That's my favorite teddy
bear. It used to be my brother's so it's really important to me.” One
13-year-old sister mentioned her clogging award certificate, “Because
that's one of the things that's important to me.” Examples of other
objects important to the siblings were a piano, “I just feel really
good when I play it”; a bicycle, “I ride my bike everywhere”; and a loom, “It's a loom and I make pot holders out of them and stuff
. . . it's so fun.” More than a quarter (27%) of the responses in the
nonpeople category fell into the animal subcategory, which was divided into
two groups: domestic (dogs, cats, rabbit, fish, and hamster) and nondomestic
(horse). Half of the
430
siblings
took photographs of domestic animals, with one sibling taking six photographs.
One sibling took two snapshots of nondomestic animals. When asked why the
image of a domestic animal, always a pet, was important, one 9-year-old boy,
similar to other participants who pho- tographed their pets, found joy in
the companionship of the family dog, “Well, my dog is important because
. . . I've like known him ever since I was born and he's a real good friend.
He always likes to play with me.” In the nonpeople category, buildings
were the least photographed (23%). They were divided into three groups: house,
school, and church. Half of the siblings took between one and three snapshots
of the inside or outside of their house. Three siblings (19%) photographed
their church and three sib- lings (19%) photographed their school. When asked
why his house was important, one 9-year-old brother said, “I would have
to move away if I didn't have it . . . I would be living on the street.” A 9-year-old brother said, “This is one of the church . . . well I like
the church because then we wouldn't be able to know of Jesus Christ.” When shown a snapshot of his school, another 9-year old-male sibling said, “That's
of my school . . . that's where I learn what happens, what's going on in the
world and stuff.” One 7-year-old sister said, “School and why
it's important to me is because it helps me learn.” Age Differences
Chi-square tests examining differences among the proportions of snap- shots
taken by siblings in the three age groups were insignificant for the people/not
people and family/not family categories. In the family subcate- gories, however,
differences in the percentage of snapshots taken by the three age groups were
significant, χ2(10, N = 240) = 56.45, p < .001. The 7- to 9-year-olds
took a higher percentage of snapshots of them- selves than did the two older
age groups, and most of these captured an achievement, activity, or accomplishment
(see Table 2). One 9-year-old boy illustrated this by his comment concerning
a snapshot his parent took of him playing soccer, “I like soccer because
its fun to play, and it gives me a lot of exercise. We don't play in a league,
we just play for fun and every player on the team gets a trophy at the end.” Participants in the 7- to 9-year-old age category also took more than twice
as many snapshots of their parents than did the other age categories. Analysis
of the interview data indicated that children often took these pho- tographs
because of their relationship with their parents. For instance, one 9-year-old
sibling voiced her connection, love, and affection for her mother
431
Table
2 Analysis of Photographs According to Age Groups
Note:
CWDS = child with Down syndrome. by saying, “Because it's my mom and
she's one of my best friends. She's the one that I can talk to the most.” The 13- to 15-year-olds did not take any photographs of extended fam- ily
members or themselves. On the other hand, they did take a higher per- centage
of snapshots of the CWDS than the other age groups, and this was the most
common family member they photographed. When asked about the importance of
her brother with DS, one 14-year-old sister suggested that he was like a typical
brother or sister: “He's watching TV just like any other normal kid
. . . throwing a baseball . . . skateboarding . . . playing with the dog .
. . watching a movie.” When examining the nonpeople photographs, chi-square
analyses also revealed significant differences by age, χ2(4, N = 82)
= 9.82, p < .05. The 13- to 15-year-olds and the 10- to 12-year-olds took
a higher percentage of photos of objects than did the youngest age group.
Half of the nonpeople photographs taken by the 7- to 9-year-olds were of buildings,
and most were of their church or rooms in their church. This probably reflects
their interest and involvement in church activities because religion may play
an
432
Table
3 Analysis of Photographs According to Gender
Note:
CWDS = child with Down syndrome. important role in their lives and many may
have attended church activities all of their life. A 9-year-old brother said, “That
one's our church . . . because the church is like . . . that's where you learn
who created you.” Gender Differences Chi-square tests revealed statistically
significant differences when comparing the proportion of photographs taken
by male and female sib- lings (see Table 3). The percentage of snapshots taken
in the people and nonpeople categories differed by gender, χ2(1, N =
371) = 11.72, p < .001; sisters took a greater proportion of people photographs
(84%). When com- paring family and nonfamily photos, gender differences also
were identi- fied, χ2(1, N = 289) = 7.44, p < .01, with brothers taking
a higher percentage of snapshots of family members (81%). In the family subcategories,
differences between the proportion of pho- tographs taken by brothers and
sisters also were significant, χ2(5, N = 246) = 14.64, p < .01. Both
sisters (48%) and brothers (44%) took a higher percent- age of photographs
of the CWDS either alone or in a family group than they
433
did
of other family members. In addition, sisters took a higher percentage of
photos of siblings (26%) and family members in mixed groups (14%). More than
twice as many pictures of parents were taken by male (12%) versus female (6%)
siblings. In addition, male siblings took almost 3 times as many snapshots
of themselves (16%) as did female siblings (6%), and many of these photographs
were of achievements. When examining the nonpeople category, the percentages
of photographs taken by brothers and sisters were not significantly different, χ2
= (2, N = 82) = .06, p > .05. Discussion In this study, siblings of CWDS were
given the opportunity to take pho- tographs of what was important to them
throughout a 2-week time period by using a disposable camera. Because children
often struggle with ver- bally expressing their experiences, photography provided
a way for these young participants to communicate their thoughts and feelings
to investi- gators without adult influences. Siblings seemed to enjoy having
cameras of their own and deciding which snapshots to take. All participants
were able to correctly use the camera to take photographs of what was important
or significant in their lives, and talking about the photographs was helpful
in establishing rapport with investigators. It also captured a snapshot of
their world and what was important to them, similar to other projects using
photography (Berman et al., 2001; Cappello, 2001; Glover-Graf, 2000; Hagedorn,
1990, 1994; Hanna & Jacobs, 1993; Mandleco et al., 2005). Most participants
also were able to talk about the photographs and describe why they were important.
What Is Important to Siblings Participants took more snapshots of people than
of nonpeople, which is similar to results of studies performed with samples
of children with devel- opmental disabilities (Dyches et al, 2004) and siblings
of children with autism (Mandleco et al., 2005). In addition, Lassetter and
colleagues (2007) found almost all photographs taken by parents of children
with disabilities were of people. Finally, photographs taken by Bosnian youth
(Berman et al., 2001), adolescents with cancer (Hanna & Jacobs, 1993),
adolescents with diabetes (Hanna et al., 1995), and homeless children (Percy,
1995) often were of people.
434
Family
was the most common category of people. These results mirror those of Dyches
et al. (2004), Mandleco et al. (2005), and Lassetter et al. (2007), who also
found that family was more frequently photographed by their participants than
was nonfamily. In addition, Cox et al. (2003), using an open-ended sentence-completion
instrument, discovered siblings of children with a disability often turned
to their family for support, validating the importance of family to siblings
growing up with a child who has a disability. Reasons that siblings gave for
taking snapshots of their family reflected that family members were loving,
helpful, and participated with them in activities. These same reasons that
family members were important also were reported in comments made by siblings
of children with autism (Mandleco et al., 2005) and parents of children with
disabilities (Lassetter et al., 2007). All siblings took photographs of the
CWDS. In fact, the CWDS was the most often photographed family member. Some
siblings stated that the CWDS was important to them because they now could
understand people who had disabilities. Others talked about the positive characteristics
of the CWDS and that the CWDS was just like a normal child. Van Riper (2000)
suggests that the child with a disability may create a growth-producing experience
for the family and can be viewed as having a positive influence on family
members, including siblings. Other researchers (Marshall et al., 2003) sug-
gest that a child with a disability is seen by family members as a blessing
and as having a specific purpose. The 13- to 15-year-old siblings took more
photographs of the CWDS than did the other two age groups. Although not verbalized
in the inter- views, these siblings may have taken more pictures of their
brother or sister with DS if their family life is centered around the care
of that brother or sister. This may mean that the typically developing older
sibling has more responsibility in caring for the CWDS than children who do
not have a brother or sister with DS (Cuskelly, Chant, & Hayes, 1998; Rossiter & Sharpe, 2001; Van Riper, 2000). Finally, because siblings might
feel responsible for the child's well-being, they may interact more with or
become more involved in the child's activities than do siblings of normally
developing children (Kaminsky & Dewey, 2001; Van Riper, 2000), hence the
number of photographs taken of the brother or sister with DS. Other siblings
were the second most commonly photographed family member. This finding is
similar to Dyches et al. (2004), who discovered that siblings were the second
most frequently photographed family sub- group in snapshots taken by children
with developmental disabilities.
435
However,
this is in contrast to siblings of children with autism, who pho- tographed
their typically developing brothers/sisters more often than any other subgroup
of family (Mandleco et al., 2005). Indeed, these results underscore the importance
of sibling relationships to participants in this study who saw their other
siblings as friends, playmates, and role models. In fact, sibling relationships
are one of the most important, influential, dynamic, and long-lasting of all
human relationships, and children interact with siblings as much as they do
with mothers, and more than they do with fathers (Lobato, Faust, & Spirito,
1988). Siblings also allow each other to express feelings and share experiences,
ideas, and dreams as they develop friendships and experience support, loyalty,
and rivalry (Verté et al., 2003). In the nonpeople category, objects (stuffed
animals, books, certificates, toys, action figures) were more often photographed
by siblings than were buildings or animals. Reasons objects were important
in this study reflected accomplishments, interests, and symbols of important
people. This is sim- ilar to the Dyches et al. (2004) and the Mandleco et
al. (2005) findings of children with disabilities and siblings of children
with autism who pho- tographed objects more than buildings or animals. One
explanation for this may be that siblings are often attached to some objects
(toys), perhaps even regarding them as friends and companions (Isenberg & Jalongo, 2003). Animals were the second most common subcategory of nonpeople,
and domestic animals (family pets) were more frequently photographed, sug-
gesting that these domestic animals are viewed as essential to the family
unit and are considered friends and playmates (Melson, 2003; Spence & Kaiser, 2002), as illustrated in the interviews. Age Differences Results indicated
that younger children (ages 7-9) took more snapshots of themselves than the
other two age groups, and most of these captured an achievement or accomplishment.
As school-age children are in the midst of the industry/inferiority stage,
they spend much of their time and energy on activities such as sports, hobbies,
or academic projects (Tilstone & Layton, 2004). Because a sense of self-worth
and accomplishment are products of these types of activities, these children
may have wanted to obtain pho- tographs of themselves participating in these
activities (Austrian, 2002; Isenberg & Jalongo, 2003; Potts & Mandleco,
2007) so they could remem- ber the moment, as mentioned in the interviews.
Participants in the youngest age category also took more snapshots of their
parents than did the children of other ages. According to Potts and
436
Mandleco
(2007), children of this age admire and want to exemplify adults. The interviews
also suggest that parents were important because they were best friends and
persons to talk to. This age group is also more likely to be at home and not
as able to go out and play with friends as older children. This situation
may have limited the selection of possible photographic oppor- tunities and
explain why parents were photographed so often. Last, this age group is not
as autonomous as older children and may still be dependent on family members,
especially parents. Siblings in the oldest age group (13-15) photographed
the CWDS more than did the other two age groups. These older siblings may
be more likely to provide care and be responsible for the CWDS than younger
children, perhaps explaining why they took so many photographs of the CWDS.
In fact, Rossiter and Sharpe (2001) suggest that older siblings have increased
respon- sibility in caring for their siblings when compared to younger siblings
when the other siblings have disabilities. There also may be increased support
and decreased conflict among siblings during adolescence, demonstrating attach-
ment and positive regard (Potts & Mandleco, 2007). Examination of the
transcripts of the older siblings mentioned that the CWDS was just like a
normal child and had many positive characteristics. Adolescents took a greater
proportion of photographs of objects when compared to the other age groups.
This importance of objects may relate to adolescents' development of identity
because their photographs included clothes, books, musical instruments, and
items representing achievements (medals, trophies, and certificates). Pictures
taken of cars, bicycles, and motorcycles may reflect the adolescent's use
of various vehicles for trans- portation and growing independence from their
family. Gender Differences Siblings of both genders took more photographs
of the CWDS either in a family group or alone than any other kind of photograph.
This may be because these brothers and sisters assume more responsibility
for the child with a disability than do siblings in families not raising a
child with a dis- ability (Van Riper, 2000). In fact, Rossiter and Sharpe
(2001) suggest that both male and female siblings take on equal managing roles
for the child with a disability, and those roles are greater than siblings
take on in families of typically developing children. On the other hand, when
compared to children with other types of cognitive disabilities, CWDS tend
to be better behaved and have better social behavior and communication skills
than do children with other developmental disabilities, allowing for positive
and
437
more
common interaction for both male and female siblings (Stores, Stores, Fellows,
& Buckley, 1998). Female siblings photographed people more than did male
siblings; they also took more snapshots of the CWDS, their typically developing
brothers and sisters, and nonfamily than did male siblings. Perhaps this is
because women are often encouraged more than men to assume expressive roles
that involve being nurturing, sensitive, kind, and cooperative (Shaffer, 2005; Sigelman & Rider, 2003), and this was reflected in their photographs of
loved ones. Sisters may have taken more photographs of nonfamily members (often
peers) than did brothers because they view their peers as close friends and
such friendships are intimate and characteristically involve exchanges of
emotional support and self-disclosure (Bee & Boyd, 2002). Results also
indicated that male siblings took almost 3 times as many snapshots of themselves
as did female siblings. Perhaps this reflects pride and confidence (Austrian,
2002) because many of these self-portraits were of achievements and activities.
Limitations and Recommendations There are a least four limitations to this
study. First, participants lived in the same large metropolitan area in the
Intermountain West so generaliza- tions to siblings of CWDS living in rural
and urban areas from other parts of the country will need to be made with
caution. Another limitation is that the participants were fairly homogeneous:
parents were educated, middle class, Caucasian, and involved to some degree
in intervention programs for their CWDS. Third, the majority of participants
lived in two-parent homes with at least two other children in the family.
This family structure and size is different than many families in the United
States. Fourth, some censor- ship (allowing the sibling to only take certain
pictures, suggesting what photographs to take) by the parents may have occurred.
Even though families were instructed to encourage the siblings to independently
take photographs of whatever they wanted, parents may have suggested that
sib- lings take certain photographs, limiting the photographs taken, especially
of the younger age group. If this were the case, then photographs taken by
the brothers/sisters may not have truly portrayed what was important to them
but what was important to the parent. It also can present an ethical dilemma
if parents believe that allowing children to take any photograph they wanted
is intrusive to their family life. Consequently, suggesting that the sibling
take specific photographs may be how parents could have controlled the intrusion.
438
Recommendations
for further research include using families from a variety of geographic areas,
socioeconomic classes, ethnic backgrounds, family types and sizes, and raising
children with other chronic conditions or disabilities as well as families
raising only typically developing children as participants so comparisons
can be made across groups. In addition, future research should include the
use of a variety of qualitative methods to capture important symbols in the
lives of children (diaries, open-ended questions, drawings) so comparisons
can be made across methods (Polit & Beck, 2006). Implications The lived
experience, told from the brothers' and sisters' perspective, is a powerful
reminder to professionals that siblings' views of their experi- ences are
important and may differ from what professionals see as impor- tant. Indeed,
there is a need to listen to the sibling's voice related to their experiences
living with a brother/sister who has a disability such as DS. Information
gained from this study contributes to our knowledge base and supports the
notion that methods such as photography, which allow partic- ipants' voices
to be heard, can be a valuable approach to use in obtaining a sibling's perspective
of experiences living with a child who has a disability not afforded by other
means.
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442
Tammy
B. Rampton, RN, BS, graduated in December 2005 from Brigham Young University,
College of Nursing, and currently works as a registered nurse part time on
a physical rehabil- itation floor at Alaska Regional Hospital in Anchorage.
Jessica L. Rosemann, RN, BS, graduated in April 2005 from Brigham Young University,
College of Nursing, and currently works part time as a registered nurse at
Primary Children's Medical Center in Salt Lake City, Utah, in the pediatric
intensive care unit. She is PALS and BLS certified and has just finished her
preceptor certification. She also teaches neurotrauma classes to new graduates.
Aimee L. Latta, RN, BS, graduated in December 2005 from Brigham Young University,
College of Nursing, and currently works as a registered nurse on a medical
oncology/bone marrow transplant unit at Beth Israel Deaconess Medical Center
in Boston. Her research and clinical interests include the impacts of socioeconomic
status on the HIV/AIDS population in Sub-Saharan Africa; clinical side effects
of Interleukin-2 therapy on patients with Metastatic Melanoma and Metastatic
Renal Cell Carcinoma; and public health issues related to immunol- ogy, infectious
diseases, and women's and children's health. Barbara L. Mandleco, RN, PhD,
is a professor and undergraduate coordinator at the Brigham Young University,
College of Nursing and teaches nursing research and management of families.
Her current research interests include families adapting to a child with a
chronic condition and developing innovative methods of involving undergraduate
students in faculty research. Her recent publications include “Family
Photographs: Expressions of Parents Raising Children With Disabilities” in Qualitative Health Research (2007, with J. H. Lassetter & S. O. Roper), “Snapshots
of Life: Perspectives of School-Aged Individuals With Developmental Disabilities” in Research and Practice in Severe Disabilities (2004, with T. T. Dyches,
L. Cichella, & S. F. Olsen), and Pediatric Nursing: Caring for Children
and Their Families (2007, with N. Potts). Susanne Olsen Roper, PhD, is an
associate professor in the School of Family Life at Brigham Young University.
Her research interests include adaptation in families of children with chronic
illnesses and disabilities and parenting and children's social development.
Her recent publications include “The Ambiguities of Out-of-Home Care:
Children With Severe or Profound Disabilities” in Family Relations (2007,
with J. B. Jackson) and “Family Photographs: Expressions of Parents
Raising Children With Disabilities” in Qualitative Health Research (2007,
with J. H. Lassetter & B. L. Mandleco). Tina T. Dyches, EdD, is an associate
professor and coordinator of special education programs in the Department
of Counseling Psychology and Special Education at Brigham Young University.
Her work is focused on adaptation of families raising children with disabilities
or chronic conditions and children's literature that includes characters with
disabilities. Recent publications include “Being a Sibling of a Child
With Special Circumstances” in Nursing Science Quarterly (2005, with
S. Baumann & M. Braddick) and “Snapshots of Life: Perspectives of
School-Aged Individuals With Developmental Disabilities” in Research
and Practice in Severe Disabilities (2004, with L. Cichella, S. F. Olsen,
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Content analysis revealed two categories: people/nonpeople. The people category included family members and friends, whereas the non-people category included objects, animals, and buildings. Similarities/differences also were noted according to age and gender. Seven- to 9-year-olds took more snapshots of themselves and their parents than did the other age groups; the 10-to 12-year-olds and 13- to 15-year-olds took more photographs of the CWDS than did the younger age group. Female siblings took more snapshots of their typically developing brothers/sisters, family members in mixed groups, and people not in their family than did male siblings. Male siblings took more photographs of their parents and themselves. Results validate the importance of gathering qualitative data from children and confirm the use of photography as one of these methods.</abstract><subject><genre>keywords</genre><topic>Down syndrome</topic><topic>photography</topic><topic>childbearing/child rearing</topic><topic>family/participant group</topic></subject><relatedItem type="host"><titleInfo><title>Journal of family nursing</title></titleInfo><genre type="journal" authority="ISTEX" authorityURI="https://publication-type.data.istex.fr" valueURI="https://publication-type.data.istex.fr/ark:/67375/JMC-0GLKJH51-B">journal</genre><identifier type="ISSN">1074-8407</identifier><identifier type="eISSN">1552-549X</identifier><identifier type="PublisherID">JFN</identifier><identifier type="PublisherID-hwp">spjfn</identifier><part><date>2007</date><detail type="volume"><caption>vol.</caption><number>13</number></detail><detail type="issue"><caption>no.</caption><number>4</number></detail><extent unit="pages"><start>420</start><end>442</end></extent></part></relatedItem><identifier type="istex">BB29504F6B3AFF9B438D056FDF22F42DA8B69653</identifier><identifier type="ark">ark:/67375/M70-K761XSNN-6</identifier><identifier type="DOI">10.1177/1074840707308580</identifier><identifier type="ArticleID">10.1177_1074840707308580</identifier><recordInfo><recordContentSource authority="ISTEX" authorityURI="https://loaded-corpus.data.istex.fr" valueURI="https://loaded-corpus.data.istex.fr/ark:/67375/XBH-0J1N7DQT-B">sage</recordContentSource></recordInfo></mods><json:item><extension>json</extension><original>false</original><mimetype>application/json</mimetype><uri>https://api.istex.fr/document/BB29504F6B3AFF9B438D056FDF22F42DA8B69653/metadata/json</uri></json:item></metadata><serie></serie></istex></record>Pour manipuler ce document sous Unix (Dilib)
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