{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,5]],"date-time":"2026-09-05T20:34:24Z","timestamp":1788640464749,"version":"build-2803163510"},"reference-count":30,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2022,3,4]],"date-time":"2022-03-04T00:00:00Z","timestamp":1646352000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100016779","name":"Statens geotekniska institut","doi-asserted-by":"publisher","award":["ALFGBG\u2010718681"],"award-info":[{"award-number":["ALFGBG\u2010718681"]}],"id":[{"id":"10.13039\/100016779","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Child"],"published-print":{"date-parts":[[2022,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>CLN3 disease is a neurodegenerative condition presenting in the first decade of life typically leading to death in the third decade. The earliest symptom is rapidly progressive visual impairment followed by intellectual and motor impairments, epilepsy and behavioural disturbances. There are limited data on how the condition affects the family system or the role of family resilience in paediatric neurodegenerative diseases.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Semi\u2010structured interviews were conducted with eight parents (five mothers and three fathers) of five children with CLN3. Interview questions focused on the experience of having a child with CLN3, its impact on the family system as well as the concept of family resilience. Data were analysed via thematic analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The thematic analysis resulted in four main themes. The theme \u2018recurring losses\u2019 included the feeling of losing a healthy child, the child's loss of abilities and loss of relationships. The theme \u2018disruption to the family system\u2019 included that siblings could be \u2018side\u2010lined\u2019, the potential negative impact on romantic relationships and difficulties finding time to oneself. The theme \u2018Society is not developed for a progressive disease\u2019 highlighted the difficulties parents faced with respect to contacts with the health and\/or social insurance system. The paediatric health care system was seen as supportive, but the adult health care system was not seen as fit for the purpose. Regarding family resilience, parents felt that the disease forced them to reconsider what was important in life. Several parents described that they learned to value small moments of joy and create deep connections through involvement in family routines and rituals.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>CLN3 places a very significant burden on the family system including parental feelings of loss, impact on family relationships and lack of understanding within the health\/social insurance systems. The concept of family resilience may be useful in understanding the experiences of families affected by paediatric neurodegenerative conditions.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cch.12993","type":"journal-article","created":{"date-parts":[[2022,3,2]],"date-time":"2022-03-02T06:38:35Z","timestamp":1646203115000},"page":"842-851","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":21,"title":["Parental experiences of having a child with CLN3 disease (juvenile Batten disease) and how these experiences relate to family resilience"],"prefix":"10.1111","volume":"48","author":[{"given":"Mattias","family":"Krantz","sequence":"first","affiliation":[{"name":"Department of Psychology University of Gothenburg Gothenburg Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emma","family":"Malm","sequence":"additional","affiliation":[{"name":"Department of Psychology University of Gothenburg Gothenburg Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Niklas","family":"Darin","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Institute of Clinical Sciences University of Gothenburg Gothenburg Sweden"},{"name":"Queen Silvia Children's Hospital, Sahlgrenska University Hospital Gothenburg Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kalliopi","family":"Sofou","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Institute of Clinical Sciences University of Gothenburg Gothenburg Sweden"},{"name":"Queen Silvia Children's Hospital, Sahlgrenska University Hospital Gothenburg Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antri","family":"Savvidou","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Institute of Clinical Sciences University of Gothenburg Gothenburg Sweden"},{"name":"Queen Silvia Children's Hospital, Sahlgrenska University Hospital Gothenburg Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Colin","family":"Reilly","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Institute of Clinical Sciences University of Gothenburg Gothenburg Sweden"},{"name":"Queen Silvia Children's Hospital, Sahlgrenska University Hospital Gothenburg Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Petra","family":"Bostr\u00f6m","sequence":"additional","affiliation":[{"name":"Department of Psychology University of Gothenburg Gothenburg Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,3,4]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073813494813"},{"issue":"1","key":"e_1_2_12_3_1","first-page":"33","article-title":"Symptomatisk behandling av pasienter med barndomsformer av nevronal ceroid lipofuscinose (NCL)","volume":"45","author":"Augestad L. 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