{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,27]],"date-time":"2026-10-27T18:55:35Z","timestamp":1793127335348,"version":"4.5.0"},"reference-count":39,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2006,1,31]],"date-time":"2006-01-31T00:00:00Z","timestamp":1138665600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Advanced Nursing"],"published-print":{"date-parts":[[2006,2]]},"abstract":"<jats:p>\n                    <jats:bold>Aim.\u2002<\/jats:bold>\n                    This paper reports a study to assess stress, well\u2010being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention.\n                  <\/jats:p>\n                  <jats:p>\n                    <jats:bold>Background.\u2002<\/jats:bold>\n                    Despite diagnosis\u2010specific studies, little overall knowledge exists about life\u2010consequences for families of children with rare disorders.\n                  <\/jats:p>\n                  <jats:p>\n                    <jats:bold>Method.\u2002<\/jats:bold>\n                    We used a prospective design with baseline data and two follow\u2010ups (at 6 and 12\u2003months) after an intervention. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national centre for families of children with rare disabilities were consecutively selected (\n                    <jats:italic>n<\/jats:italic>\n                    \u2003=\u2003136 mothers, 108 fathers). Instruments of parental stress, social support, self\u2010rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full\u2010time employment, participation in a parent association, child's age and type of disability.\n                  <\/jats:p>\n                  <jats:p>\n                    <jats:bold>Results.\u2002<\/jats:bold>\n                    We found high parental stress, physical and emotional strain among mothers, especially among single mothers. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full\u2010time working mothers and fathers after the intervention. Parents\u2019 perceived knowledge and active coping and mothers\u2019 perceived social support were increased at follow\u2010up. Factors related to parents\u2019 overall life satisfaction (57\u201370% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network.\n                  <\/jats:p>\n                  <jats:p>\n                    <jats:bold>Conclusion.\u2002<\/jats:bold>\n                    Parents, especially fathers and full\u2010time working parents, may benefit from an intensive family competence programme.\n                  <\/jats:p>","DOI":"10.1111\/j.1365-2648.2006.03736.x","type":"journal-article","created":{"date-parts":[[2006,1,31]],"date-time":"2006-01-31T06:16:28Z","timestamp":1138688188000},"page":"392-402","source":"Crossref","is-referenced-by-count":208,"title":["Stress and well\u2010being among parents of children with rare diseases: a prospective intervention study"],"prefix":"10.1111","volume":"53","author":[{"given":"Lotta","family":"Dellve","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lena","family":"Samuelsson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andreas","family":"Tallborn","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anders","family":"Fasth","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lillemor R.\u2010M.","family":"Hallberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2006,1,31]]},"reference":[{"key":"e_1_2_9_2_1","volume-title":"Parenting Stress Index (PSI) \u2013 Manual","author":"Abidin R.","year":"1990"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.1993.18010046.x"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1037\/h0089879"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1080\/15017410009510762"},{"key":"e_1_2_9_6_1","volume-title":"Rare diseases","author":"European Commission","year":"2005"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.2001.02013.x"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(02)00059-X"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0891-4222(00)00058-5"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2702.1998.00154.x"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.1999.00987.x"},{"key":"e_1_2_9_12_1","first-page":"1340","article-title":"A small\u2010group center. 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