{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T18:05:18Z","timestamp":1792087518302,"version":"4.4.0"},"reference-count":71,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2016,11,29]],"date-time":"2016-11-29T00:00:00Z","timestamp":1480377600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100010652","name":"Holland Bloorview Kids Rehabilitation Hospital Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100010652","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Child"],"published-print":{"date-parts":[[2017,5]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Caring for children with chronic and complex medical needs places extraordinary stress on parents and other family members. A scoping review was undertaken to identify and describe the full range of current interventions for reducing caregiver stress.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Applying a broad definition of caregiver stress, a systematic search of three scientific databases (CINAHL, Embase and Ovid Medline), a general internet search and hand searching of key peer\u2010reviewed articles were conducted. Inclusion criteria were as follows: (i) published in English between 2004\u20132016; (ii) focused on familial caregivers, defined as parents, siblings or extended family; (iii) targeted children\/youth with medical complexity between the ages of 1\u201324\u2009years; and (iv) described an intervention and impact on caregiver stress. Data on type of intervention, study design and methods, measures and overall findings were extracted.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Forty\u2010nine studies were included from a list of 22\u2009339 unique titles. Six domains of interventions were found: care coordination models (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200923); respite care (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20098); telemedicine (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20095); peer and emotional support (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20096); insurance and employment benefits (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20094); and health and related supports (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20093). Across studies, there was a wide variety of designs, outcomes and measures used.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Positive findings of reductions in caregiver stress were noted within an emerging body of evidence on effective interventions for families of children with medical complexity. A commonality across domains was a significant focus on streamlining services and reducing the burden of care related to varied pressures experienced, including time, finances, care needs and service access, among others. There was non\u2010conclusive evidence however around which of the six identified intervention domains or combination thereof are most effective for reducing stress. These promising findings demonstrate that stress reduction is possible with the right support and that multiple interventions may be effective in reducing burdens of care experienced by families of children with medical complexity.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/cch.12430","type":"journal-article","created":{"date-parts":[[2016,11,29]],"date-time":"2016-11-29T03:34:41Z","timestamp":1480390481000},"page":"323-333","source":"Crossref","is-referenced-by-count":168,"title":["Children with medical complexity: a scoping review of interventions to support caregiver stress"],"prefix":"10.1111","volume":"43","author":[{"given":"H.","family":"Edelstein","sequence":"first","affiliation":[{"name":"Evidence to Care, Teaching and Learning Institute Holland Bloorview Kids Rehabilitation Hospital  Toronto ON Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J.","family":"Schippke","sequence":"additional","affiliation":[{"name":"Evidence to Care, Teaching and Learning Institute Holland Bloorview Kids Rehabilitation Hospital  Toronto ON Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S.","family":"Sheffe","sequence":"additional","affiliation":[{"name":"Evidence to Care, Teaching and Learning Institute Holland Bloorview Kids Rehabilitation Hospital  Toronto ON Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S.","family":"Kingsnorth","sequence":"additional","affiliation":[{"name":"Evidence to Care, Teaching and Learning Institute Holland Bloorview Kids Rehabilitation Hospital  Toronto ON Canada"},{"name":"Department of Occupational Science and Occupational Therapy, and Rehabilitation Sciences Institute University of Toronto  Toronto ON Canada"},{"name":"Bloorview Research Institute Holland Bloorview Kids Rehabilitation Hospital  Toronto ON Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2016,11,29]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2431-13-10"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2005-2070"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1080\/15433710903269172"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.acap.2012.06.001"},{"key":"e_1_2_11_6_1","first-page":"42","article-title":"Groupwork. Support for siblings","volume":"17","author":"Arens G.","year":"2006","journal-title":"Therapy Today"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1080\/1364557032000119616"},{"key":"e_1_2_11_8_1","first-page":"1","volume-title":"Literature Review Report for the National Co\u2010ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO)","author":"Arksey H.","year":"2002"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12122"},{"key":"e_1_2_11_10_1","first-page":"1","article-title":"Group\u2010based parent training programmes for improving parental psychosocial health (Review)","volume":"6","author":"Barlow J.","year":"2012","journal-title":"The Cochrane Library"},{"key":"e_1_2_11_11_1","first-page":"401","article-title":"Internet parent support groups for primary caregivers of a child with special health care needs","volume":"30","author":"Baum L. S.","year":"2004","journal-title":"Pediatric Nursing"},{"key":"e_1_2_11_12_1","unstructured":"Berry J. Agrawal R. Cohen E.&Kuo D.(2013)The landscape of medical care for children with medical complexity. In:Special Report for the Children's Hospital Association 1\u201315."},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2015.04.068"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedhc.2013.06.005"},{"key":"e_1_2_11_15_1","first-page":"1","article-title":"Interventions for supporting informal caregivers of patients in the terminal phase of a disease (Review)","volume":"6","author":"Candy B.","year":"2011","journal-title":"The Cochrane Library"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1177\/1367493508088552"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1097\/NNR.0b013e31825b6848"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2702.2006.01554.x"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ambp.2006.04.009"},{"key":"e_1_2_11_20_1","first-page":"213","article-title":"Complex pediatric feeding disorders: using teleconferencing technology to improve access to a treatment program","volume":"34","author":"Clawson B.","year":"2008","journal-title":"Pediatric Nursing"},{"key":"e_1_2_11_21_1","doi-asserted-by":"publisher","DOI":"10.12927\/hcq.0000.22580"},{"key":"e_1_2_11_22_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2010-0910"},{"key":"e_1_2_11_23_1","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6963-12-366"},{"key":"e_1_2_11_24_1","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jst049"},{"key":"e_1_2_11_25_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2288-13-48"},{"key":"e_1_2_11_26_1","doi-asserted-by":"publisher","DOI":"10.1177\/082585970402000403"},{"key":"e_1_2_11_27_1","doi-asserted-by":"publisher","DOI":"10.1093\/pch\/18.10.518"},{"key":"e_1_2_11_28_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedhc.2010.12.005"},{"key":"e_1_2_11_29_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2011.05.016"},{"key":"e_1_2_11_30_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2702.2008.02630.x"},{"key":"e_1_2_11_31_1","first-page":"CD009660","article-title":"Psychological interventions for parents of children and adolescents with chronic illness","volume":"8","author":"Eccleston C.","year":"2012","journal-title":"Cochrane Database of Systematic Reviews"},{"key":"e_1_2_11_32_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10995-010-0658-8"},{"key":"e_1_2_11_33_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2004-0647"},{"key":"e_1_2_11_34_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2850.2004.00788.x"},{"key":"e_1_2_11_35_1","doi-asserted-by":"publisher","DOI":"10.5172\/jamh.7.2.84"},{"key":"e_1_2_11_36_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10995-012-1018-7"},{"key":"e_1_2_11_37_1","doi-asserted-by":"publisher","DOI":"10.1097\/NHH.0b013e31824c28f2"},{"key":"e_1_2_11_38_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10995-007-0271-7"},{"key":"e_1_2_11_39_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2011.01294.x"},{"key":"e_1_2_11_40_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12122"},{"key":"e_1_2_11_41_1","doi-asserted-by":"publisher","DOI":"10.1001\/archpediatrics.2011.172"},{"key":"e_1_2_11_42_1","doi-asserted-by":"publisher","DOI":"10.1037\/a0032341"},{"key":"e_1_2_11_43_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10995-010-0660-1"},{"key":"e_1_2_11_44_1","doi-asserted-by":"publisher","DOI":"10.1186\/1748-5908-5-69"},{"key":"e_1_2_11_45_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2004.00392.x"},{"key":"e_1_2_11_46_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.113.1.1"},{"key":"e_1_2_11_47_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2009.01.007"},{"key":"e_1_2_11_48_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedhc.2012.05.003"},{"key":"e_1_2_11_49_1","doi-asserted-by":"publisher","DOI":"10.1111\/1475-6773.12215"},{"key":"e_1_2_11_50_1","doi-asserted-by":"publisher","DOI":"10.1300\/J010v44n03_08"},{"key":"e_1_2_11_51_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2009-1255J"},{"key":"e_1_2_11_52_1","doi-asserted-by":"crossref","first-page":"1507","DOI":"10.1542\/peds.113.S4.1507","article-title":"The pediatric alliance for coordinated care: evaluation of a medical home model","volume":"113","author":"Palfrey J. S.","year":"2004","journal-title":"Pediatrics"},{"key":"e_1_2_11_53_1","volume-title":"Meta\u2010review of International Evidence on Interventions to Support Carers","author":"Parker G.","year":"2010"},{"key":"e_1_2_11_54_1","doi-asserted-by":"publisher","DOI":"10.12927\/hcq.2014.24017"},{"key":"e_1_2_11_55_1","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6963-14-283"},{"key":"e_1_2_11_56_1","doi-asserted-by":"publisher","DOI":"10.1080\/01460860290042558"},{"key":"e_1_2_11_57_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.outlook.2013.03.008"},{"key":"e_1_2_11_58_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2003.00401.x"},{"key":"e_1_2_11_59_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2008.138313"},{"key":"e_1_2_11_60_1","doi-asserted-by":"publisher","DOI":"10.1080\/17483100601174293"},{"key":"e_1_2_11_61_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216311401947"},{"key":"e_1_2_11_62_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1945-1474.2012.00215.x"},{"key":"e_1_2_11_63_1","doi-asserted-by":"publisher","DOI":"10.7748\/ncyp.24.8.24.s27"},{"key":"e_1_2_11_64_1","doi-asserted-by":"publisher","DOI":"10.1177\/0193945910389623"},{"key":"e_1_2_11_65_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.apnr.2013.11.003"},{"key":"e_1_2_11_66_1","doi-asserted-by":"publisher","DOI":"10.12927\/hcq.2014.24015"},{"key":"e_1_2_11_67_1","first-page":"90","article-title":"An innovative Oklahoma program to coordinate interdisciplinary and interagency services for children with special healthcare needs at a county level","volume":"106","author":"Wolraich M.","year":"2013","journal-title":"Journal \u2010 Oklahoma State Medical Association"},{"key":"e_1_2_11_68_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10995-008-0406-5"},{"key":"e_1_2_11_69_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10995-008-0321-9"},{"key":"e_1_2_11_70_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2524.2006.00615.x"},{"key":"e_1_2_11_71_1","doi-asserted-by":"publisher","DOI":"10.1089\/tmj.2006.12.663"},{"key":"e_1_2_11_72_1","doi-asserted-by":"publisher","DOI":"10.1097\/MLR.0b013e318185cdf2"}],"container-title":["Child: Care, Health and Development"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fcch.12430","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fcch.12430","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cch.12430","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,3]],"date-time":"2023-10-03T10:18:50Z","timestamp":1696328330000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/cch.12430"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,11,29]]},"references-count":71,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2017,5]]}},"alternative-id":["10.1111\/cch.12430"],"URL":"https:\/\/doi.org\/10.1111\/cch.12430","archive":["Portico"],"relation":{},"ISSN":["0305-1862","1365-2214"],"issn-type":[{"value":"0305-1862","type":"print"},{"value":"1365-2214","type":"electronic"}],"subject":[],"published":{"date-parts":[[2016,11,29]]}}}