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Do carer’s levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress?
Purpose The aim of the current study was to determine how carer needs changed longitudinally and understand associations between unmet needs and distress. Methods Family carers of patients with high-grade glioma (HGG) were recruited. Carers completed questionnaires during patients’ chemoradiotherapy...
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| Published in: | Supportive care in cancer 2018, Vol.26 (1), p.275-286 |
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| container_title | Supportive care in cancer |
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| creator | Halkett, G. K. B. Lobb, E. A. Shaw, T. Sinclair, M. M. Miller, L. Hovey, E. Nowak, A. K. |
| description | Purpose
The aim of the current study was to determine how carer needs changed longitudinally and understand associations between unmet needs and distress.
Methods
Family carers of patients with high-grade glioma (HGG) were recruited. Carers completed questionnaires during patients’ chemoradiotherapy (T1), 3 months (T2) and 6 months (T3) including the following: the Distress Thermometer, the General Health Questionnaire-12, the Partner and Carer Supportive Care (PCS) Needs Scale and its supplement the Access to Services Needs Scale and the Brain Tumour Specific Supportive Care Needs Scale. Linear latent growth models were applied.
Results
The time 1 questionnaire was completed by 118 carers; 70 carers provided responses at time 3. While the mean numbers of elevated (
moderate to high
) needs remained stable over time, the specific needs changed. The most frequently reported PCS needs included the impact of caring on the carer’s working life or usual activities, finding more accessible parking, making life decisions in the context of uncertainty, reducing stress in the patient’s life and understanding the patient’s experience. The most frequently reported need unique to carers of a brain tumour patient was for information on adjusting to cognitive changes in the patient. Other prominent needs included managing difficult aspects of the patient’s behaviour and adjusting to changes in the patient’s personality, both of which increased over time. Higher numbers of unmet needs were associated cross-sectionally with higher distress levels.
Conclusion
Carers of people with HGG remain highly distressed and their needs evolve over time, indicating a requirement for ongoing evaluation of unmet needs and interventions to address carer psychological morbidities. |
| doi_str_mv | 10.1007/s00520-017-3846-x |
| format | article |
| fullrecord | <record><control><sourceid>gale_proqu</sourceid><recordid>TN_cdi_proquest_miscellaneous_1929105864</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><galeid>A516023211</galeid><sourcerecordid>A516023211</sourcerecordid><originalsourceid>FETCH-LOGICAL-c482t-2baee91433a8f67ed578bcf6b13ec8b16dc37f7a0d75d03414b526091284827a3</originalsourceid><addsrcrecordid>eNp1kstu1DAUhi0EokPhAdggS2zYpPiSxM4KVeUqVWIDa8uxTxJXiT3Ynk7Z8RqseDeeBEfTqQCBvDiS9f3n-iP0lJIzSoh4mQhpGKkIFRWXdVvd3EMbWnNeCc67-2hDuppWNW-aE_QopStSQNGwh-iESUmk6MQG_XgdsNER4s9v3xOe4RrmhMOAd36BjD2ATdhM2o-AwzVEnN0CeD-BX1XOj3gIEW91duBzwtbp0YcEFu9dnvDkxqkao7aAx9mFRWPtLZ7CHpeKOE-Q4FgixAizzkeldSlHSOnVY_Rg0HOCJ7fxFH1---bTxfvq8uO7Dxfnl5WpJcsV6zVAt86u5dAKsI2QvRnannIwsqetNVwMQhMrGkt4Teu-YS3pKJNFLzQ_RS8OebcxfNlBympxycA8aw9hlxTtWEdJI9u6oM__Qq_CLvrSXaFaWXZel_3fUaOeQTk_hBy1WZOq84a2hHFGaaHO_kGVZ2FxJngYXPn_Q0APAhNDShEGtY1u0fGrokStplAHU6hya7WaQt0UzbPbhnf9AvZOcXRBAdgBSNv1phB_m-i_WX8BzGTDTw</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>1968941473</pqid></control><display><type>article</type><title>Do carer’s levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress?</title><source>Springer Nature</source><source>Social Science Premium Collection (Proquest) (PQ_SDU_P3)</source><source>Sociology Collection</source><creator>Halkett, G. K. B. ; Lobb, E. A. ; Shaw, T. ; Sinclair, M. M. ; Miller, L. ; Hovey, E. ; Nowak, A. K.</creator><creatorcontrib>Halkett, G. K. B. ; Lobb, E. A. ; Shaw, T. ; Sinclair, M. M. ; Miller, L. ; Hovey, E. ; Nowak, A. K.</creatorcontrib><description>Purpose
The aim of the current study was to determine how carer needs changed longitudinally and understand associations between unmet needs and distress.
Methods
Family carers of patients with high-grade glioma (HGG) were recruited. Carers completed questionnaires during patients’ chemoradiotherapy (T1), 3 months (T2) and 6 months (T3) including the following: the Distress Thermometer, the General Health Questionnaire-12, the Partner and Carer Supportive Care (PCS) Needs Scale and its supplement the Access to Services Needs Scale and the Brain Tumour Specific Supportive Care Needs Scale. Linear latent growth models were applied.
Results
The time 1 questionnaire was completed by 118 carers; 70 carers provided responses at time 3. While the mean numbers of elevated (
moderate to high
) needs remained stable over time, the specific needs changed. The most frequently reported PCS needs included the impact of caring on the carer’s working life or usual activities, finding more accessible parking, making life decisions in the context of uncertainty, reducing stress in the patient’s life and understanding the patient’s experience. The most frequently reported need unique to carers of a brain tumour patient was for information on adjusting to cognitive changes in the patient. Other prominent needs included managing difficult aspects of the patient’s behaviour and adjusting to changes in the patient’s personality, both of which increased over time. Higher numbers of unmet needs were associated cross-sectionally with higher distress levels.
Conclusion
Carers of people with HGG remain highly distressed and their needs evolve over time, indicating a requirement for ongoing evaluation of unmet needs and interventions to address carer psychological morbidities.</description><identifier>ISSN: 0941-4355</identifier><identifier>EISSN: 1433-7339</identifier><identifier>DOI: 10.1007/s00520-017-3846-x</identifier><identifier>PMID: 28808797</identifier><language>eng</language><publisher>Berlin/Heidelberg: Springer Berlin Heidelberg</publisher><subject>Activities of daily living ; Adult ; Aged ; Analysis ; Brain cancer ; Brain Neoplasms - mortality ; Brain Neoplasms - pathology ; Brain Neoplasms - psychology ; Brain tumors ; Caregivers ; Caregivers - psychology ; Cross-Sectional Studies ; Emotions ; Empathy - ethics ; Female ; Glioma ; Glioma - mortality ; Glioma - pathology ; Glioma - psychology ; Gliomas ; Health aspects ; Health Services Needs and Demand - statistics & numerical data ; Humans ; Longitudinal Studies ; Male ; Measuring instruments ; Medical diagnosis ; Medicine ; Medicine & Public Health ; Middle Aged ; Nursing ; Nursing Research ; Oncology ; Original Article ; Pain Medicine ; Patient care ; Patients ; Rehabilitation Medicine ; Stress ; Stress (Psychology) ; Surveys ; Tumors</subject><ispartof>Supportive care in cancer, 2018, Vol.26 (1), p.275-286</ispartof><rights>Springer-Verlag GmbH Germany 2017</rights><rights>COPYRIGHT 2018 Springer</rights><rights>Supportive Care in Cancer is a copyright of Springer, (2017). All Rights Reserved.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c482t-2baee91433a8f67ed578bcf6b13ec8b16dc37f7a0d75d03414b526091284827a3</citedby><cites>FETCH-LOGICAL-c482t-2baee91433a8f67ed578bcf6b13ec8b16dc37f7a0d75d03414b526091284827a3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.proquest.com/docview/1968941473/fulltextPDF?pq-origsite=primo$$EPDF$$P50$$Gproquest$$H</linktopdf><linktohtml>$$Uhttps://www.proquest.com/docview/1968941473?pq-origsite=primo$$EHTML$$P50$$Gproquest$$H</linktohtml><link.rule.ids>314,776,780,21374,21375,27903,27904,33590,33591,34509,34510,43712,44094,73967,74385</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/28808797$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Halkett, G. K. B.</creatorcontrib><creatorcontrib>Lobb, E. A.</creatorcontrib><creatorcontrib>Shaw, T.</creatorcontrib><creatorcontrib>Sinclair, M. M.</creatorcontrib><creatorcontrib>Miller, L.</creatorcontrib><creatorcontrib>Hovey, E.</creatorcontrib><creatorcontrib>Nowak, A. K.</creatorcontrib><title>Do carer’s levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress?</title><title>Supportive care in cancer</title><addtitle>Support Care Cancer</addtitle><addtitle>Support Care Cancer</addtitle><description>Purpose
The aim of the current study was to determine how carer needs changed longitudinally and understand associations between unmet needs and distress.
Methods
Family carers of patients with high-grade glioma (HGG) were recruited. Carers completed questionnaires during patients’ chemoradiotherapy (T1), 3 months (T2) and 6 months (T3) including the following: the Distress Thermometer, the General Health Questionnaire-12, the Partner and Carer Supportive Care (PCS) Needs Scale and its supplement the Access to Services Needs Scale and the Brain Tumour Specific Supportive Care Needs Scale. Linear latent growth models were applied.
Results
The time 1 questionnaire was completed by 118 carers; 70 carers provided responses at time 3. While the mean numbers of elevated (
moderate to high
) needs remained stable over time, the specific needs changed. The most frequently reported PCS needs included the impact of caring on the carer’s working life or usual activities, finding more accessible parking, making life decisions in the context of uncertainty, reducing stress in the patient’s life and understanding the patient’s experience. The most frequently reported need unique to carers of a brain tumour patient was for information on adjusting to cognitive changes in the patient. Other prominent needs included managing difficult aspects of the patient’s behaviour and adjusting to changes in the patient’s personality, both of which increased over time. Higher numbers of unmet needs were associated cross-sectionally with higher distress levels.
Conclusion
Carers of people with HGG remain highly distressed and their needs evolve over time, indicating a requirement for ongoing evaluation of unmet needs and interventions to address carer psychological morbidities.</description><subject>Activities of daily living</subject><subject>Adult</subject><subject>Aged</subject><subject>Analysis</subject><subject>Brain cancer</subject><subject>Brain Neoplasms - mortality</subject><subject>Brain Neoplasms - pathology</subject><subject>Brain Neoplasms - psychology</subject><subject>Brain tumors</subject><subject>Caregivers</subject><subject>Caregivers - psychology</subject><subject>Cross-Sectional Studies</subject><subject>Emotions</subject><subject>Empathy - ethics</subject><subject>Female</subject><subject>Glioma</subject><subject>Glioma - mortality</subject><subject>Glioma - pathology</subject><subject>Glioma - psychology</subject><subject>Gliomas</subject><subject>Health aspects</subject><subject>Health Services Needs and Demand - statistics & numerical data</subject><subject>Humans</subject><subject>Longitudinal Studies</subject><subject>Male</subject><subject>Measuring instruments</subject><subject>Medical diagnosis</subject><subject>Medicine</subject><subject>Medicine & Public Health</subject><subject>Middle Aged</subject><subject>Nursing</subject><subject>Nursing Research</subject><subject>Oncology</subject><subject>Original Article</subject><subject>Pain Medicine</subject><subject>Patient care</subject><subject>Patients</subject><subject>Rehabilitation Medicine</subject><subject>Stress</subject><subject>Stress (Psychology)</subject><subject>Surveys</subject><subject>Tumors</subject><issn>0941-4355</issn><issn>1433-7339</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2018</creationdate><recordtype>article</recordtype><sourceid>ALSLI</sourceid><sourceid>HEHIP</sourceid><sourceid>M2R</sourceid><sourceid>M2S</sourceid><recordid>eNp1kstu1DAUhi0EokPhAdggS2zYpPiSxM4KVeUqVWIDa8uxTxJXiT3Ynk7Z8RqseDeeBEfTqQCBvDiS9f3n-iP0lJIzSoh4mQhpGKkIFRWXdVvd3EMbWnNeCc67-2hDuppWNW-aE_QopStSQNGwh-iESUmk6MQG_XgdsNER4s9v3xOe4RrmhMOAd36BjD2ATdhM2o-AwzVEnN0CeD-BX1XOj3gIEW91duBzwtbp0YcEFu9dnvDkxqkao7aAx9mFRWPtLZ7CHpeKOE-Q4FgixAizzkeldSlHSOnVY_Rg0HOCJ7fxFH1---bTxfvq8uO7Dxfnl5WpJcsV6zVAt86u5dAKsI2QvRnannIwsqetNVwMQhMrGkt4Teu-YS3pKJNFLzQ_RS8OebcxfNlBympxycA8aw9hlxTtWEdJI9u6oM__Qq_CLvrSXaFaWXZel_3fUaOeQTk_hBy1WZOq84a2hHFGaaHO_kGVZ2FxJngYXPn_Q0APAhNDShEGtY1u0fGrokStplAHU6hya7WaQt0UzbPbhnf9AvZOcXRBAdgBSNv1phB_m-i_WX8BzGTDTw</recordid><startdate>2018</startdate><enddate>2018</enddate><creator>Halkett, G. K. B.</creator><creator>Lobb, E. A.</creator><creator>Shaw, T.</creator><creator>Sinclair, M. M.</creator><creator>Miller, L.</creator><creator>Hovey, E.</creator><creator>Nowak, A. K.</creator><general>Springer Berlin Heidelberg</general><general>Springer</general><general>Springer Nature B.V</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>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></search><sort><creationdate>2018</creationdate><title>Do carer’s levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress?</title><author>Halkett, G. K. B. ; Lobb, E. A. ; Shaw, T. ; Sinclair, M. M. ; Miller, L. ; Hovey, E. ; Nowak, A. K.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c482t-2baee91433a8f67ed578bcf6b13ec8b16dc37f7a0d75d03414b526091284827a3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2018</creationdate><topic>Activities of daily living</topic><topic>Adult</topic><topic>Aged</topic><topic>Analysis</topic><topic>Brain cancer</topic><topic>Brain Neoplasms - mortality</topic><topic>Brain Neoplasms - pathology</topic><topic>Brain Neoplasms - psychology</topic><topic>Brain tumors</topic><topic>Caregivers</topic><topic>Caregivers - psychology</topic><topic>Cross-Sectional Studies</topic><topic>Emotions</topic><topic>Empathy - ethics</topic><topic>Female</topic><topic>Glioma</topic><topic>Glioma - mortality</topic><topic>Glioma - pathology</topic><topic>Glioma - psychology</topic><topic>Gliomas</topic><topic>Health aspects</topic><topic>Health Services Needs and Demand - statistics & numerical data</topic><topic>Humans</topic><topic>Longitudinal Studies</topic><topic>Male</topic><topic>Measuring instruments</topic><topic>Medical diagnosis</topic><topic>Medicine</topic><topic>Medicine & Public Health</topic><topic>Middle Aged</topic><topic>Nursing</topic><topic>Nursing Research</topic><topic>Oncology</topic><topic>Original Article</topic><topic>Pain Medicine</topic><topic>Patient care</topic><topic>Patients</topic><topic>Rehabilitation Medicine</topic><topic>Stress</topic><topic>Stress (Psychology)</topic><topic>Surveys</topic><topic>Tumors</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Halkett, G. K. B.</creatorcontrib><creatorcontrib>Lobb, E. A.</creatorcontrib><creatorcontrib>Shaw, T.</creatorcontrib><creatorcontrib>Sinclair, M. M.</creatorcontrib><creatorcontrib>Miller, L.</creatorcontrib><creatorcontrib>Hovey, E.</creatorcontrib><creatorcontrib>Nowak, A. K.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Social Sciences Premium Collection【Remote access available】</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)</collection><collection>ProQuest Central</collection><collection>Social Science Premium Collection (Proquest) (PQ_SDU_P3)</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Databases</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>PML(ProQuest Medical Library)</collection><collection>ProQuest Social Science Journals</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>Halkett, G. K. B.</au><au>Lobb, E. A.</au><au>Shaw, T.</au><au>Sinclair, M. M.</au><au>Miller, L.</au><au>Hovey, E.</au><au>Nowak, A. K.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Do carer’s levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress?</atitle><jtitle>Supportive care in cancer</jtitle><stitle>Support Care Cancer</stitle><addtitle>Support Care Cancer</addtitle><date>2018</date><risdate>2018</risdate><volume>26</volume><issue>1</issue><spage>275</spage><epage>286</epage><pages>275-286</pages><issn>0941-4355</issn><eissn>1433-7339</eissn><abstract>Purpose
The aim of the current study was to determine how carer needs changed longitudinally and understand associations between unmet needs and distress.
Methods
Family carers of patients with high-grade glioma (HGG) were recruited. Carers completed questionnaires during patients’ chemoradiotherapy (T1), 3 months (T2) and 6 months (T3) including the following: the Distress Thermometer, the General Health Questionnaire-12, the Partner and Carer Supportive Care (PCS) Needs Scale and its supplement the Access to Services Needs Scale and the Brain Tumour Specific Supportive Care Needs Scale. Linear latent growth models were applied.
Results
The time 1 questionnaire was completed by 118 carers; 70 carers provided responses at time 3. While the mean numbers of elevated (
moderate to high
) needs remained stable over time, the specific needs changed. The most frequently reported PCS needs included the impact of caring on the carer’s working life or usual activities, finding more accessible parking, making life decisions in the context of uncertainty, reducing stress in the patient’s life and understanding the patient’s experience. The most frequently reported need unique to carers of a brain tumour patient was for information on adjusting to cognitive changes in the patient. Other prominent needs included managing difficult aspects of the patient’s behaviour and adjusting to changes in the patient’s personality, both of which increased over time. Higher numbers of unmet needs were associated cross-sectionally with higher distress levels.
Conclusion
Carers of people with HGG remain highly distressed and their needs evolve over time, indicating a requirement for ongoing evaluation of unmet needs and interventions to address carer psychological morbidities.</abstract><cop>Berlin/Heidelberg</cop><pub>Springer Berlin Heidelberg</pub><pmid>28808797</pmid><doi>10.1007/s00520-017-3846-x</doi><tpages>12</tpages><oa>free_for_read</oa></addata></record> |
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| subjects | Activities of daily living Adult Aged Analysis Brain cancer Brain Neoplasms - mortality Brain Neoplasms - pathology Brain Neoplasms - psychology Brain tumors Caregivers Caregivers - psychology Cross-Sectional Studies Emotions Empathy - ethics Female Glioma Glioma - mortality Glioma - pathology Glioma - psychology Gliomas Health aspects Health Services Needs and Demand - statistics & numerical data Humans Longitudinal Studies Male Measuring instruments Medical diagnosis Medicine Medicine & Public Health Middle Aged Nursing Nursing Research Oncology Original Article Pain Medicine Patient care Patients Rehabilitation Medicine Stress Stress (Psychology) Surveys Tumors |
| title | Do carer’s levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress? |
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