Understanding parents’ communication experiences in childhood cancer: a qualitative exploration and model for future research
Purpose Following their child’s cancer diagnosis, parents must rapidly familiarize themselves with cancer-specific information and the health-care setting. Theory-driven research is needed to understand and address parents’ difficulties when interacting with health-care professionals (HCPs). We exam...
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| Veröffentlicht in: | Supportive care in cancer 2020-09, Vol.28 (9), p.4467-4476 |
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| creator | Baenziger, Julia Hetherington, Kate Wakefield, Claire E. Carlson, Lauren McGill, Brittany C. Cohn, Richard J. Michel, Gisela Sansom-Daly, Ursula M. |
| description | Purpose
Following their child’s cancer diagnosis, parents must rapidly familiarize themselves with cancer-specific information and the health-care setting. Theory-driven research is needed to understand and address parents’ difficulties when interacting with health-care professionals (HCPs). We examined parents’ health-care experiences during and after the child’s cancer treatment.
Methods
We recruited parents of children/adolescents (aged |
| doi_str_mv | 10.1007/s00520-019-05270-6 |
| format | Article |
| fullrecord | <record><control><sourceid>gale_proqu</sourceid><recordid>TN_cdi_proquest_miscellaneous_2337069426</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><galeid>A630447315</galeid><sourcerecordid>A630447315</sourcerecordid><originalsourceid>FETCH-LOGICAL-c486t-9c819806785b464f073048e0bff891297edbffd1df9b2e1bde9820c45d59a9803</originalsourceid><addsrcrecordid>eNp9kc9qFTEUxoMo9lp9ARcScONmav7NZOKuFK1CwY1dh9zk5N6UmeQ2mZG60tfw9XySZpxqUUSyyOGc3_dxkg-h55ScUELk60JIy0hDqGpqIUnTPUAbKjhvJOfqIdoQJWgjeNseoSelXBFCpWzZY3TEqWK17Dbo62V0kMtkogtxhw8mQ5zKj2_fsU3jOMdgzRRSxHBzgBwgWig4RGz3YXD7lBy2pvbyG2zw9WyGMFX8Myz4kPIqrdZ4TA4G7FPGfp7mDDhDAZPt_il65M1Q4NndfYwu3739dPa-ufh4_uHs9KKxou-mRtmeqp50sm-3ohOeSE5ED2Trfa8oUxJcLR11Xm0Z0K0D1TNiRetaZaqQH6NXq-8hp-sZyqTHUCwMg4mQ5qIZ55J0SrCuoi__Qq_SnGPdTrNl3qr67_fUzgygQ_RpysYupvq0q8sJyelCnfyDqsfBGGyK4EPt_yFgq8DmVEoGrw85jCZ_0ZToJXW9pq5r6vpn6nrZ-MXdxvN2BPdb8ivmCvAVKHUUd5Dvn_Qf21uNQbj1</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2426359005</pqid></control><display><type>article</type><title>Understanding parents’ communication experiences in childhood cancer: a qualitative exploration and model for future research</title><source>SpringerLink Journals - AutoHoldings</source><creator>Baenziger, Julia ; Hetherington, Kate ; Wakefield, Claire E. ; Carlson, Lauren ; McGill, Brittany C. ; Cohn, Richard J. ; Michel, Gisela ; Sansom-Daly, Ursula M.</creator><creatorcontrib>Baenziger, Julia ; Hetherington, Kate ; Wakefield, Claire E. ; Carlson, Lauren ; McGill, Brittany C. ; Cohn, Richard J. ; Michel, Gisela ; Sansom-Daly, Ursula M.</creatorcontrib><description>Purpose
Following their child’s cancer diagnosis, parents must rapidly familiarize themselves with cancer-specific information and the health-care setting. Theory-driven research is needed to understand and address parents’ difficulties when interacting with health-care professionals (HCPs). We examined parents’ health-care experiences during and after the child’s cancer treatment.
Methods
We recruited parents of children/adolescents (aged < 18 years) who had recently completed cancer treatment with curative intent from eight Australian hospitals. We conducted in-depth interviews using the
psychosocial adjustment to illness scale
while recruiting for the “CASCADE” survivorship intervention. We used grounded theory to explore parents’ health-care experiences.
Results
Fifty-two mothers and six fathers of survivors (mean age at diagnosis = 5.1 years, time since treatment = 1.9 years) participated. Parents’ experiences were characterized by (1) positive and negative interactions, (2) attitudes towards health care and HCPs, (3) trust and mistrust in the doctor-parent relationship, and (4) parents’ engagement in care. Parents built trust with HCPs, who seemed approachable and personable. Although parents’ experience was overall very positive, nearly half of parents reported negative interactions and mistrust. Parents rationalized negative experiences as caused by constraints in the health-care setting. Most parents felt support ended prematurely. We propose a new model accounting for these experiences and identifying potential underlying mechanisms.
Conclusions
Depending on their degree of trust, parents followed recommendations more closely (high trust) or focused on being advocates for their child (low trust). Parents minimized the impact of negative HCP interactions through internal, rationalizing processes. Our findings demonstrate parents’ flexibility in acting as a dynamic buffer between HCP-interactions and their child.</description><identifier>ISSN: 0941-4355</identifier><identifier>EISSN: 1433-7339</identifier><identifier>DOI: 10.1007/s00520-019-05270-6</identifier><identifier>PMID: 31927756</identifier><language>eng</language><publisher>Berlin/Heidelberg: Springer Berlin Heidelberg</publisher><subject>Behavior ; Cancer ; Cancer therapies ; Care and treatment ; Childhood ; Children ; Communication ; Medical personnel ; Medicine ; Medicine & Public Health ; Nursing ; Nursing Research ; Oncology ; Oncology, Experimental ; Original Article ; Pain Medicine ; Parents & parenting ; Pediatrics ; Rehabilitation Medicine ; Survivor ; Teenagers</subject><ispartof>Supportive care in cancer, 2020-09, Vol.28 (9), p.4467-4476</ispartof><rights>Springer-Verlag GmbH Germany, part of Springer Nature 2020</rights><rights>COPYRIGHT 2020 Springer</rights><rights>Springer-Verlag GmbH Germany, part of Springer Nature 2020.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c486t-9c819806785b464f073048e0bff891297edbffd1df9b2e1bde9820c45d59a9803</citedby><cites>FETCH-LOGICAL-c486t-9c819806785b464f073048e0bff891297edbffd1df9b2e1bde9820c45d59a9803</cites><orcidid>0000-0003-1938-8343 ; 0000-0002-5457-5462 ; 0000-0001-7704-7067 ; 0000-0002-9589-0928 ; 0000-0001-9121-4423 ; 0000-0002-2134-2988 ; 0000-0002-2400-1353 ; 0000-0003-4200-8900</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s00520-019-05270-6$$EPDF$$P50$$Gspringer$$H</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s00520-019-05270-6$$EHTML$$P50$$Gspringer$$H</linktohtml><link.rule.ids>314,780,784,27922,27923,41486,42555,51317</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/31927756$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Baenziger, Julia</creatorcontrib><creatorcontrib>Hetherington, Kate</creatorcontrib><creatorcontrib>Wakefield, Claire E.</creatorcontrib><creatorcontrib>Carlson, Lauren</creatorcontrib><creatorcontrib>McGill, Brittany C.</creatorcontrib><creatorcontrib>Cohn, Richard J.</creatorcontrib><creatorcontrib>Michel, Gisela</creatorcontrib><creatorcontrib>Sansom-Daly, Ursula M.</creatorcontrib><title>Understanding parents’ communication experiences in childhood cancer: a qualitative exploration and model for future research</title><title>Supportive care in cancer</title><addtitle>Support Care Cancer</addtitle><addtitle>Support Care Cancer</addtitle><description>Purpose
Following their child’s cancer diagnosis, parents must rapidly familiarize themselves with cancer-specific information and the health-care setting. Theory-driven research is needed to understand and address parents’ difficulties when interacting with health-care professionals (HCPs). We examined parents’ health-care experiences during and after the child’s cancer treatment.
Methods
We recruited parents of children/adolescents (aged < 18 years) who had recently completed cancer treatment with curative intent from eight Australian hospitals. We conducted in-depth interviews using the
psychosocial adjustment to illness scale
while recruiting for the “CASCADE” survivorship intervention. We used grounded theory to explore parents’ health-care experiences.
Results
Fifty-two mothers and six fathers of survivors (mean age at diagnosis = 5.1 years, time since treatment = 1.9 years) participated. Parents’ experiences were characterized by (1) positive and negative interactions, (2) attitudes towards health care and HCPs, (3) trust and mistrust in the doctor-parent relationship, and (4) parents’ engagement in care. Parents built trust with HCPs, who seemed approachable and personable. Although parents’ experience was overall very positive, nearly half of parents reported negative interactions and mistrust. Parents rationalized negative experiences as caused by constraints in the health-care setting. Most parents felt support ended prematurely. We propose a new model accounting for these experiences and identifying potential underlying mechanisms.
Conclusions
Depending on their degree of trust, parents followed recommendations more closely (high trust) or focused on being advocates for their child (low trust). Parents minimized the impact of negative HCP interactions through internal, rationalizing processes. Our findings demonstrate parents’ flexibility in acting as a dynamic buffer between HCP-interactions and their child.</description><subject>Behavior</subject><subject>Cancer</subject><subject>Cancer therapies</subject><subject>Care and treatment</subject><subject>Childhood</subject><subject>Children</subject><subject>Communication</subject><subject>Medical personnel</subject><subject>Medicine</subject><subject>Medicine & Public Health</subject><subject>Nursing</subject><subject>Nursing Research</subject><subject>Oncology</subject><subject>Oncology, Experimental</subject><subject>Original Article</subject><subject>Pain Medicine</subject><subject>Parents & parenting</subject><subject>Pediatrics</subject><subject>Rehabilitation Medicine</subject><subject>Survivor</subject><subject>Teenagers</subject><issn>0941-4355</issn><issn>1433-7339</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><recordid>eNp9kc9qFTEUxoMo9lp9ARcScONmav7NZOKuFK1CwY1dh9zk5N6UmeQ2mZG60tfw9XySZpxqUUSyyOGc3_dxkg-h55ScUELk60JIy0hDqGpqIUnTPUAbKjhvJOfqIdoQJWgjeNseoSelXBFCpWzZY3TEqWK17Dbo62V0kMtkogtxhw8mQ5zKj2_fsU3jOMdgzRRSxHBzgBwgWig4RGz3YXD7lBy2pvbyG2zw9WyGMFX8Myz4kPIqrdZ4TA4G7FPGfp7mDDhDAZPt_il65M1Q4NndfYwu3739dPa-ufh4_uHs9KKxou-mRtmeqp50sm-3ohOeSE5ED2Trfa8oUxJcLR11Xm0Z0K0D1TNiRetaZaqQH6NXq-8hp-sZyqTHUCwMg4mQ5qIZ55J0SrCuoi__Qq_SnGPdTrNl3qr67_fUzgygQ_RpysYupvq0q8sJyelCnfyDqsfBGGyK4EPt_yFgq8DmVEoGrw85jCZ_0ZToJXW9pq5r6vpn6nrZ-MXdxvN2BPdb8ivmCvAVKHUUd5Dvn_Qf21uNQbj1</recordid><startdate>20200901</startdate><enddate>20200901</enddate><creator>Baenziger, Julia</creator><creator>Hetherington, Kate</creator><creator>Wakefield, Claire E.</creator><creator>Carlson, Lauren</creator><creator>McGill, Brittany C.</creator><creator>Cohn, Richard J.</creator><creator>Michel, Gisela</creator><creator>Sansom-Daly, Ursula M.</creator><general>Springer Berlin Heidelberg</general><general>Springer</general><general>Springer Nature B.V</general><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>0-V</scope><scope>3V.</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88J</scope><scope>8AO</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ALSLI</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>HEHIP</scope><scope>K9.</scope><scope>KB0</scope><scope>M0S</scope><scope>M1P</scope><scope>M2R</scope><scope>M2S</scope><scope>NAPCQ</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>Q9U</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0003-1938-8343</orcidid><orcidid>https://orcid.org/0000-0002-5457-5462</orcidid><orcidid>https://orcid.org/0000-0001-7704-7067</orcidid><orcidid>https://orcid.org/0000-0002-9589-0928</orcidid><orcidid>https://orcid.org/0000-0001-9121-4423</orcidid><orcidid>https://orcid.org/0000-0002-2134-2988</orcidid><orcidid>https://orcid.org/0000-0002-2400-1353</orcidid><orcidid>https://orcid.org/0000-0003-4200-8900</orcidid></search><sort><creationdate>20200901</creationdate><title>Understanding parents’ communication experiences in childhood cancer: a qualitative exploration and model for future research</title><author>Baenziger, Julia ; Hetherington, Kate ; Wakefield, Claire E. ; Carlson, Lauren ; McGill, Brittany C. ; Cohn, Richard J. ; Michel, Gisela ; Sansom-Daly, Ursula M.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c486t-9c819806785b464f073048e0bff891297edbffd1df9b2e1bde9820c45d59a9803</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>Behavior</topic><topic>Cancer</topic><topic>Cancer therapies</topic><topic>Care and treatment</topic><topic>Childhood</topic><topic>Children</topic><topic>Communication</topic><topic>Medical personnel</topic><topic>Medicine</topic><topic>Medicine & Public Health</topic><topic>Nursing</topic><topic>Nursing Research</topic><topic>Oncology</topic><topic>Oncology, Experimental</topic><topic>Original Article</topic><topic>Pain Medicine</topic><topic>Parents & parenting</topic><topic>Pediatrics</topic><topic>Rehabilitation Medicine</topic><topic>Survivor</topic><topic>Teenagers</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Baenziger, Julia</creatorcontrib><creatorcontrib>Hetherington, Kate</creatorcontrib><creatorcontrib>Wakefield, Claire E.</creatorcontrib><creatorcontrib>Carlson, Lauren</creatorcontrib><creatorcontrib>McGill, Brittany C.</creatorcontrib><creatorcontrib>Cohn, Richard J.</creatorcontrib><creatorcontrib>Michel, Gisela</creatorcontrib><creatorcontrib>Sansom-Daly, Ursula M.</creatorcontrib><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Social Sciences Premium Collection</collection><collection>ProQuest Central (Corporate)</collection><collection>Nursing & Allied Health Database</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Social Science Database (Alumni Edition)</collection><collection>ProQuest Pharma Collection</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>Social Science Premium Collection</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>Sociology Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Social Science Database</collection><collection>Sociology Database</collection><collection>Nursing & Allied Health Premium</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>ProQuest Central Basic</collection><collection>MEDLINE - Academic</collection><jtitle>Supportive care in cancer</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Baenziger, Julia</au><au>Hetherington, Kate</au><au>Wakefield, Claire E.</au><au>Carlson, Lauren</au><au>McGill, Brittany C.</au><au>Cohn, Richard J.</au><au>Michel, Gisela</au><au>Sansom-Daly, Ursula M.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Understanding parents’ communication experiences in childhood cancer: a qualitative exploration and model for future research</atitle><jtitle>Supportive care in cancer</jtitle><stitle>Support Care Cancer</stitle><addtitle>Support Care Cancer</addtitle><date>2020-09-01</date><risdate>2020</risdate><volume>28</volume><issue>9</issue><spage>4467</spage><epage>4476</epage><pages>4467-4476</pages><issn>0941-4355</issn><eissn>1433-7339</eissn><abstract>Purpose
Following their child’s cancer diagnosis, parents must rapidly familiarize themselves with cancer-specific information and the health-care setting. Theory-driven research is needed to understand and address parents’ difficulties when interacting with health-care professionals (HCPs). We examined parents’ health-care experiences during and after the child’s cancer treatment.
Methods
We recruited parents of children/adolescents (aged < 18 years) who had recently completed cancer treatment with curative intent from eight Australian hospitals. We conducted in-depth interviews using the
psychosocial adjustment to illness scale
while recruiting for the “CASCADE” survivorship intervention. We used grounded theory to explore parents’ health-care experiences.
Results
Fifty-two mothers and six fathers of survivors (mean age at diagnosis = 5.1 years, time since treatment = 1.9 years) participated. Parents’ experiences were characterized by (1) positive and negative interactions, (2) attitudes towards health care and HCPs, (3) trust and mistrust in the doctor-parent relationship, and (4) parents’ engagement in care. Parents built trust with HCPs, who seemed approachable and personable. Although parents’ experience was overall very positive, nearly half of parents reported negative interactions and mistrust. Parents rationalized negative experiences as caused by constraints in the health-care setting. Most parents felt support ended prematurely. We propose a new model accounting for these experiences and identifying potential underlying mechanisms.
Conclusions
Depending on their degree of trust, parents followed recommendations more closely (high trust) or focused on being advocates for their child (low trust). Parents minimized the impact of negative HCP interactions through internal, rationalizing processes. Our findings demonstrate parents’ flexibility in acting as a dynamic buffer between HCP-interactions and their child.</abstract><cop>Berlin/Heidelberg</cop><pub>Springer Berlin Heidelberg</pub><pmid>31927756</pmid><doi>10.1007/s00520-019-05270-6</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0003-1938-8343</orcidid><orcidid>https://orcid.org/0000-0002-5457-5462</orcidid><orcidid>https://orcid.org/0000-0001-7704-7067</orcidid><orcidid>https://orcid.org/0000-0002-9589-0928</orcidid><orcidid>https://orcid.org/0000-0001-9121-4423</orcidid><orcidid>https://orcid.org/0000-0002-2134-2988</orcidid><orcidid>https://orcid.org/0000-0002-2400-1353</orcidid><orcidid>https://orcid.org/0000-0003-4200-8900</orcidid><oa>free_for_read</oa></addata></record> |
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| language | eng |
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| source | SpringerLink Journals - AutoHoldings |
| subjects | Behavior Cancer Cancer therapies Care and treatment Childhood Children Communication Medical personnel Medicine Medicine & Public Health Nursing Nursing Research Oncology Oncology, Experimental Original Article Pain Medicine Parents & parenting Pediatrics Rehabilitation Medicine Survivor Teenagers |
| title | Understanding parents’ communication experiences in childhood cancer: a qualitative exploration and model for future research |
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