Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews
Background: Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, th...
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| Veröffentlicht in: | Palliative medicine 2015-09, Vol.29 (8), p.737-745 |
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| creator | Weisser, Fabia B Bristowe, Katherine Jackson, Diana |
| description | Background:
Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring.
Objective:
To explore the experiences of family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, specifically the relationship between positive and negative experiences of caring, and to identify possible ways to better support these caregivers.
Methods:
Secondary thematic analysis of 24 semi-structured qualitative interviews conducted longitudinally with 10 family caregivers. Interviews explored rewarding and unrewarding aspects of caring.
Results:
Themes emerged around burden, needs, rewards and resilience. Resilience included getting active, retaining perspective and living for the moment. Burden was multifaceted, including social burden, responsibility, advocacy, ambivalence, guilt and struggling with acceptance. Rewards included being helped and ‘ticking along’. Needs were multifaceted, including social, practical and psychological needs. The four main themes were interrelated. A model of coping was developed, integrating resilience (active/positive), burden (active/negative), needs (passive/negative) and reward (passive/positive).
Conclusion:
Burden, resilience, needs and rewards are interrelated. Caregivers’ ability to cope with caring for a person with Motor Neurone Disease/Amyotrophic Lateral Sclerosis oscillates between positive and negative aspects of caring, being at times active, at times passive.
Clinical implications:
Coping is a non-linear process, oscillating between different states of mind. The proposed model could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans. |
| doi_str_mv | 10.1177/0269216315575851 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_1710665882</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sage_id>10.1177_0269216315575851</sage_id><sourcerecordid>3817763481</sourcerecordid><originalsourceid>FETCH-LOGICAL-c398t-adb0bf97625d31ab0c523d477cdb42e7eb3a1dd058f97a91c102b75848c2ffd3</originalsourceid><addsrcrecordid>eNqNkktv3CAUhVHVqJmk3XdVIXWTRZzwMLanu1GaPqRpu2gW3VkYrmeIMDhgz3T-Y35U8UxaRZEidYFA3O8c4HARekvJBaVleUlYMWe04FSIUlSCvkAzmpdlRjj59RLNpnI21Y_RSYy3hFBOivwVOmaiLNKoZuj--ncPwYBTELFvcTMGDe4cOwAdz3GArQw6Yul0Wkdj9yQ2DreyM3aHlQywMhsIe3UPvreArdkYt8JbM6zxNz_4gL_DGLwD_NFEkBEuF93OD8H3a6PwUg4QpMU_lYXgo4kf8AJHUN5pGXZ4WEMnh8RJJ-0ulaeD7kZpzZC2N9Nlkn5jYBtfo6NW2ghvHuZTdPPp-ubqS7b88fnr1WKZKT6vhkzqhjTtfIpAcyobogTjOuWmdJMzKKHhkmpNRJUgOaeKEtakfPNKsbbV_BSdHWz74O9GiEPdmajAWunAj7GmJSVFIaqK_QdKci7Sr4iEvn-C3voxpDfvDQtW8pwViSIHSqWoYoC27oPpUk41JfXUE_XTnkiSdw_GY9OB_if42wQJyA5AlCt4dOpzhn8AwHPC1Q</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>1716273426</pqid></control><display><type>article</type><title>Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews</title><source>Access via SAGE</source><source>MEDLINE</source><source>Applied Social Sciences Index & Abstracts (ASSIA)</source><creator>Weisser, Fabia B ; Bristowe, Katherine ; Jackson, Diana</creator><creatorcontrib>Weisser, Fabia B ; Bristowe, Katherine ; Jackson, Diana</creatorcontrib><description>Background:
Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring.
Objective:
To explore the experiences of family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, specifically the relationship between positive and negative experiences of caring, and to identify possible ways to better support these caregivers.
Methods:
Secondary thematic analysis of 24 semi-structured qualitative interviews conducted longitudinally with 10 family caregivers. Interviews explored rewarding and unrewarding aspects of caring.
Results:
Themes emerged around burden, needs, rewards and resilience. Resilience included getting active, retaining perspective and living for the moment. Burden was multifaceted, including social burden, responsibility, advocacy, ambivalence, guilt and struggling with acceptance. Rewards included being helped and ‘ticking along’. Needs were multifaceted, including social, practical and psychological needs. The four main themes were interrelated. A model of coping was developed, integrating resilience (active/positive), burden (active/negative), needs (passive/negative) and reward (passive/positive).
Conclusion:
Burden, resilience, needs and rewards are interrelated. Caregivers’ ability to cope with caring for a person with Motor Neurone Disease/Amyotrophic Lateral Sclerosis oscillates between positive and negative aspects of caring, being at times active, at times passive.
Clinical implications:
Coping is a non-linear process, oscillating between different states of mind. The proposed model could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans.</description><identifier>ISSN: 0269-2163</identifier><identifier>EISSN: 1477-030X</identifier><identifier>DOI: 10.1177/0269216315575851</identifier><identifier>PMID: 25762578</identifier><language>eng</language><publisher>London, England: SAGE Publications</publisher><subject>Adaptation, Psychological ; Adult ; Aged ; Amyotrophic lateral sclerosis ; Amyotrophic Lateral Sclerosis - nursing ; Caregivers ; Caregivers - psychology ; Cost of Illness ; Family Health ; Female ; Health Services Needs and Demand ; Humans ; Male ; Middle Aged ; Motor Neuron Disease - nursing ; Motor neurone disease ; Needs Assessment ; Palliative care ; Qualitative Research ; Questionnaires ; Resilience, Psychological ; Reward ; Social Support ; Stress, Psychological - psychology ; Surveys and Questionnaires</subject><ispartof>Palliative medicine, 2015-09, Vol.29 (8), p.737-745</ispartof><rights>The Author(s) 2015</rights><rights>The Author(s) 2015.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c398t-adb0bf97625d31ab0c523d477cdb42e7eb3a1dd058f97a91c102b75848c2ffd3</citedby><cites>FETCH-LOGICAL-c398t-adb0bf97625d31ab0c523d477cdb42e7eb3a1dd058f97a91c102b75848c2ffd3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://journals.sagepub.com/doi/pdf/10.1177/0269216315575851$$EPDF$$P50$$Gsage$$H</linktopdf><linktohtml>$$Uhttps://journals.sagepub.com/doi/10.1177/0269216315575851$$EHTML$$P50$$Gsage$$H</linktohtml><link.rule.ids>314,780,784,12846,21819,27924,27925,30999,43621,43622</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/25762578$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Weisser, Fabia B</creatorcontrib><creatorcontrib>Bristowe, Katherine</creatorcontrib><creatorcontrib>Jackson, Diana</creatorcontrib><title>Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews</title><title>Palliative medicine</title><addtitle>Palliat Med</addtitle><description>Background:
Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring.
Objective:
To explore the experiences of family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, specifically the relationship between positive and negative experiences of caring, and to identify possible ways to better support these caregivers.
Methods:
Secondary thematic analysis of 24 semi-structured qualitative interviews conducted longitudinally with 10 family caregivers. Interviews explored rewarding and unrewarding aspects of caring.
Results:
Themes emerged around burden, needs, rewards and resilience. Resilience included getting active, retaining perspective and living for the moment. Burden was multifaceted, including social burden, responsibility, advocacy, ambivalence, guilt and struggling with acceptance. Rewards included being helped and ‘ticking along’. Needs were multifaceted, including social, practical and psychological needs. The four main themes were interrelated. A model of coping was developed, integrating resilience (active/positive), burden (active/negative), needs (passive/negative) and reward (passive/positive).
Conclusion:
Burden, resilience, needs and rewards are interrelated. Caregivers’ ability to cope with caring for a person with Motor Neurone Disease/Amyotrophic Lateral Sclerosis oscillates between positive and negative aspects of caring, being at times active, at times passive.
Clinical implications:
Coping is a non-linear process, oscillating between different states of mind. The proposed model could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans.</description><subject>Adaptation, Psychological</subject><subject>Adult</subject><subject>Aged</subject><subject>Amyotrophic lateral sclerosis</subject><subject>Amyotrophic Lateral Sclerosis - nursing</subject><subject>Caregivers</subject><subject>Caregivers - psychology</subject><subject>Cost of Illness</subject><subject>Family Health</subject><subject>Female</subject><subject>Health Services Needs and Demand</subject><subject>Humans</subject><subject>Male</subject><subject>Middle Aged</subject><subject>Motor Neuron Disease - nursing</subject><subject>Motor neurone disease</subject><subject>Needs Assessment</subject><subject>Palliative care</subject><subject>Qualitative Research</subject><subject>Questionnaires</subject><subject>Resilience, Psychological</subject><subject>Reward</subject><subject>Social Support</subject><subject>Stress, Psychological - psychology</subject><subject>Surveys and Questionnaires</subject><issn>0269-2163</issn><issn>1477-030X</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2015</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><recordid>eNqNkktv3CAUhVHVqJmk3XdVIXWTRZzwMLanu1GaPqRpu2gW3VkYrmeIMDhgz3T-Y35U8UxaRZEidYFA3O8c4HARekvJBaVleUlYMWe04FSIUlSCvkAzmpdlRjj59RLNpnI21Y_RSYy3hFBOivwVOmaiLNKoZuj--ncPwYBTELFvcTMGDe4cOwAdz3GArQw6Yul0Wkdj9yQ2DreyM3aHlQywMhsIe3UPvreArdkYt8JbM6zxNz_4gL_DGLwD_NFEkBEuF93OD8H3a6PwUg4QpMU_lYXgo4kf8AJHUN5pGXZ4WEMnh8RJJ-0ulaeD7kZpzZC2N9Nlkn5jYBtfo6NW2ghvHuZTdPPp-ubqS7b88fnr1WKZKT6vhkzqhjTtfIpAcyobogTjOuWmdJMzKKHhkmpNRJUgOaeKEtakfPNKsbbV_BSdHWz74O9GiEPdmajAWunAj7GmJSVFIaqK_QdKci7Sr4iEvn-C3voxpDfvDQtW8pwViSIHSqWoYoC27oPpUk41JfXUE_XTnkiSdw_GY9OB_if42wQJyA5AlCt4dOpzhn8AwHPC1Q</recordid><startdate>20150901</startdate><enddate>20150901</enddate><creator>Weisser, Fabia B</creator><creator>Bristowe, Katherine</creator><creator>Jackson, Diana</creator><general>SAGE Publications</general><general>Sage Publications Ltd</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>7QJ</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88G</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ALSLI</scope><scope>AN0</scope><scope>ASE</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FPQ</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>HEHIP</scope><scope>K6X</scope><scope>K9-</scope><scope>K9.</scope><scope>KB0</scope><scope>M0R</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>M2S</scope><scope>NAPCQ</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>7X8</scope></search><sort><creationdate>20150901</creationdate><title>Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews</title><author>Weisser, Fabia B ; Bristowe, Katherine ; Jackson, Diana</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c398t-adb0bf97625d31ab0c523d477cdb42e7eb3a1dd058f97a91c102b75848c2ffd3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2015</creationdate><topic>Adaptation, Psychological</topic><topic>Adult</topic><topic>Aged</topic><topic>Amyotrophic lateral sclerosis</topic><topic>Amyotrophic Lateral Sclerosis - nursing</topic><topic>Caregivers</topic><topic>Caregivers - psychology</topic><topic>Cost of Illness</topic><topic>Family Health</topic><topic>Female</topic><topic>Health Services Needs and Demand</topic><topic>Humans</topic><topic>Male</topic><topic>Middle Aged</topic><topic>Motor Neuron Disease - nursing</topic><topic>Motor neurone disease</topic><topic>Needs Assessment</topic><topic>Palliative care</topic><topic>Qualitative Research</topic><topic>Questionnaires</topic><topic>Resilience, Psychological</topic><topic>Reward</topic><topic>Social Support</topic><topic>Stress, Psychological - psychology</topic><topic>Surveys and Questionnaires</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Weisser, Fabia B</creatorcontrib><creatorcontrib>Bristowe, Katherine</creatorcontrib><creatorcontrib>Jackson, Diana</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</collection><collection>ProQuest Central (Corporate)</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</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>Psychology Database (Alumni)</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>British Nursing Database</collection><collection>British Nursing Index</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>Sociology Collection</collection><collection>British Nursing Index</collection><collection>Consumer Health Database (Alumni Edition)</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Consumer Health Database</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Psychology 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 One Psychology</collection><collection>ProQuest Central Basic</collection><collection>MEDLINE - Academic</collection><jtitle>Palliative medicine</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Weisser, Fabia B</au><au>Bristowe, Katherine</au><au>Jackson, Diana</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews</atitle><jtitle>Palliative medicine</jtitle><addtitle>Palliat Med</addtitle><date>2015-09-01</date><risdate>2015</risdate><volume>29</volume><issue>8</issue><spage>737</spage><epage>745</epage><pages>737-745</pages><issn>0269-2163</issn><eissn>1477-030X</eissn><abstract>Background:
Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring.
Objective:
To explore the experiences of family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, specifically the relationship between positive and negative experiences of caring, and to identify possible ways to better support these caregivers.
Methods:
Secondary thematic analysis of 24 semi-structured qualitative interviews conducted longitudinally with 10 family caregivers. Interviews explored rewarding and unrewarding aspects of caring.
Results:
Themes emerged around burden, needs, rewards and resilience. Resilience included getting active, retaining perspective and living for the moment. Burden was multifaceted, including social burden, responsibility, advocacy, ambivalence, guilt and struggling with acceptance. Rewards included being helped and ‘ticking along’. Needs were multifaceted, including social, practical and psychological needs. The four main themes were interrelated. A model of coping was developed, integrating resilience (active/positive), burden (active/negative), needs (passive/negative) and reward (passive/positive).
Conclusion:
Burden, resilience, needs and rewards are interrelated. Caregivers’ ability to cope with caring for a person with Motor Neurone Disease/Amyotrophic Lateral Sclerosis oscillates between positive and negative aspects of caring, being at times active, at times passive.
Clinical implications:
Coping is a non-linear process, oscillating between different states of mind. The proposed model could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans.</abstract><cop>London, England</cop><pub>SAGE Publications</pub><pmid>25762578</pmid><doi>10.1177/0269216315575851</doi><tpages>9</tpages></addata></record> |
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| ispartof | Palliative medicine, 2015-09, Vol.29 (8), p.737-745 |
| issn | 0269-2163 1477-030X |
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| subjects | Adaptation, Psychological Adult Aged Amyotrophic lateral sclerosis Amyotrophic Lateral Sclerosis - nursing Caregivers Caregivers - psychology Cost of Illness Family Health Female Health Services Needs and Demand Humans Male Middle Aged Motor Neuron Disease - nursing Motor neurone disease Needs Assessment Palliative care Qualitative Research Questionnaires Resilience, Psychological Reward Social Support Stress, Psychological - psychology Surveys and Questionnaires |
| title | Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews |
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