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<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://purl.org/ontology/bibo/Article> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/dc/terms/title> "The Challenges of Living with and Caring for a Child or Children Affected by Neuronal Ceroid Lipofuscinosis Type 2 Disease: In-Depth Family Surveys in the United Kingdom and Germany"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/ontology/bibo/abstract> "Limited research has investigated the challenges faced by families caring for children with neuronal ceroid lipofuscinosis type 2\r\n(CLN2) disease. Face-to-face, mixed-method, in-depth surveys were conducted with 19 families (23 children) in the UK (n=9) and\r\nGermany (n=10) to assess the impact of caring for children with CLN2 disease, using national wellbeing and quality of life (QoL)\r\nmeasures. Primary (n=19) and secondary (n=10) caregivers, adult siblings (n=2), and child siblings (n=2) were included. Caregivers\r\nreported reduced health-related QoL compared with age and gender-matched controls (mean utility scores 0.08 and 0.11 lower\r\nin Germany and the UK, respectively). Hours of caregiving were significantly higher relative to that provided to a child of normal\r\nhealth, with stress, back pain, and reductions in sleep being recorded. Lower life satisfaction and happiness with partners were\r\nalso reported, along with significant financial burden. Those caring for children in the late stage of disease were more greatly\r\nimpacted than those with children in the rapidly progressive stage, or who were bereaved. The results of this study make clear\r\nthe importance of emotional and practical support for caregivers and siblings coping with CLN2 disease."^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/dc/terms/date> "2020-05-18" .
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<https://discovery.ucl.ac.uk/id/org/ext-32968aae438d48a70a3e47b1d813003a> <http://xmlns.com/foaf/0.1/name> "FapUNIFESP (SciELO)"^^<http://www.w3.org/2001/XMLSchema#string> .
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<https://discovery.ucl.ac.uk/id/eprint/10098316#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_3> <https://discovery.ucl.ac.uk/id/person/ext-1ad934141b1320dbf0dc23eab77e3d38> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-ef19f3a2a8b3ecbe7a694f08ac45db6e> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10098316#authors> .
<https://discovery.ucl.ac.uk/id/eprint/10098316#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_4> <https://discovery.ucl.ac.uk/id/person/ext-ef19f3a2a8b3ecbe7a694f08ac45db6e> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-02178f3efd528980d0dab88cf8268c43> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10098316#authors> .
<https://discovery.ucl.ac.uk/id/eprint/10098316#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_5> <https://discovery.ucl.ac.uk/id/person/ext-02178f3efd528980d0dab88cf8268c43> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-1eba1dc8a5c7fb7aa76cfa68df0aeeb2> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10098316#authors> .
<https://discovery.ucl.ac.uk/id/eprint/10098316#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_6> <https://discovery.ucl.ac.uk/id/person/ext-1eba1dc8a5c7fb7aa76cfa68df0aeeb2> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-9d9210eefef58de1e1799582652f3e99> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10098316#authors> .
<https://discovery.ucl.ac.uk/id/eprint/10098316#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_7> <https://discovery.ucl.ac.uk/id/person/ext-9d9210eefef58de1e1799582652f3e99> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-a1e600bbfb65669ef1c1a3ffd1550600> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10098316#authors> .
<https://discovery.ucl.ac.uk/id/eprint/10098316#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_8> <https://discovery.ucl.ac.uk/id/person/ext-a1e600bbfb65669ef1c1a3ffd1550600> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-c91316ef04bd40e8b4c1208f61b37425> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10098316#authors> .
<https://discovery.ucl.ac.uk/id/eprint/10098316#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_9> <https://discovery.ucl.ac.uk/id/person/ext-c91316ef04bd40e8b4c1208f61b37425> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-d425bb422ed6fb9149b8723d8866a948> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10098316#authors> .
<https://discovery.ucl.ac.uk/id/eprint/10098316#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_10> <https://discovery.ucl.ac.uk/id/person/ext-d425bb422ed6fb9149b8723d8866a948> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-c163fab46d5725ac3c438fb68d67bf37> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10098316#authors> .
<https://discovery.ucl.ac.uk/id/eprint/10098316#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_11> <https://discovery.ucl.ac.uk/id/person/ext-c163fab46d5725ac3c438fb68d67bf37> .
<https://discovery.ucl.ac.uk/id/person/ext-c91316ef04bd40e8b4c1208f61b37425> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> .
<https://discovery.ucl.ac.uk/id/person/ext-c91316ef04bd40e8b4c1208f61b37425> <http://xmlns.com/foaf/0.1/givenName> "I-A"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-c91316ef04bd40e8b4c1208f61b37425> <http://xmlns.com/foaf/0.1/familyName> "Terzakis-Snyder"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-c91316ef04bd40e8b4c1208f61b37425> <http://xmlns.com/foaf/0.1/name> "I-A Terzakis-Snyder"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-a1e600bbfb65669ef1c1a3ffd1550600> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> .
<https://discovery.ucl.ac.uk/id/person/ext-a1e600bbfb65669ef1c1a3ffd1550600> <http://xmlns.com/foaf/0.1/givenName> "A"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-a1e600bbfb65669ef1c1a3ffd1550600> <http://xmlns.com/foaf/0.1/familyName> "Olaye"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-a1e600bbfb65669ef1c1a3ffd1550600> <http://xmlns.com/foaf/0.1/name> "A Olaye"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-eb83cc187f6d2852865d48179da866c4> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> .
<https://discovery.ucl.ac.uk/id/person/ext-eb83cc187f6d2852865d48179da866c4> <http://xmlns.com/foaf/0.1/givenName> "M"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-eb83cc187f6d2852865d48179da866c4> <http://xmlns.com/foaf/0.1/familyName> "Jain"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-eb83cc187f6d2852865d48179da866c4> <http://xmlns.com/foaf/0.1/name> "M Jain"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-d425bb422ed6fb9149b8723d8866a948> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> .
<https://discovery.ucl.ac.uk/id/person/ext-d425bb422ed6fb9149b8723d8866a948> <http://xmlns.com/foaf/0.1/givenName> "I"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-d425bb422ed6fb9149b8723d8866a948> <http://xmlns.com/foaf/0.1/familyName> "Dyck"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-d425bb422ed6fb9149b8723d8866a948> <http://xmlns.com/foaf/0.1/name> "I Dyck"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-ef19f3a2a8b3ecbe7a694f08ac45db6e> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> .
<https://discovery.ucl.ac.uk/id/person/ext-ef19f3a2a8b3ecbe7a694f08ac45db6e> <http://xmlns.com/foaf/0.1/givenName> "R"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-ef19f3a2a8b3ecbe7a694f08ac45db6e> <http://xmlns.com/foaf/0.1/familyName> "Ballinger"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-ef19f3a2a8b3ecbe7a694f08ac45db6e> <http://xmlns.com/foaf/0.1/name> "R Ballinger"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-1ad934141b1320dbf0dc23eab77e3d38> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> .
<https://discovery.ucl.ac.uk/id/person/ext-1ad934141b1320dbf0dc23eab77e3d38> <http://xmlns.com/foaf/0.1/givenName> "T"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-1ad934141b1320dbf0dc23eab77e3d38> <http://xmlns.com/foaf/0.1/familyName> "Butt"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-1ad934141b1320dbf0dc23eab77e3d38> <http://xmlns.com/foaf/0.1/name> "T Butt"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-1eba1dc8a5c7fb7aa76cfa68df0aeeb2> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> .
<https://discovery.ucl.ac.uk/id/person/ext-1eba1dc8a5c7fb7aa76cfa68df0aeeb2> <http://xmlns.com/foaf/0.1/givenName> "J"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-1eba1dc8a5c7fb7aa76cfa68df0aeeb2> <http://xmlns.com/foaf/0.1/familyName> "Macey"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-1eba1dc8a5c7fb7aa76cfa68df0aeeb2> <http://xmlns.com/foaf/0.1/name> "J Macey"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-9d9210eefef58de1e1799582652f3e99> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> .
<https://discovery.ucl.ac.uk/id/person/ext-9d9210eefef58de1e1799582652f3e99> <http://xmlns.com/foaf/0.1/givenName> "T"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-9d9210eefef58de1e1799582652f3e99> <http://xmlns.com/foaf/0.1/familyName> "Peasgood"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-9d9210eefef58de1e1799582652f3e99> <http://xmlns.com/foaf/0.1/name> "T Peasgood"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-02178f3efd528980d0dab88cf8268c43> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> .
<https://discovery.ucl.ac.uk/id/person/ext-02178f3efd528980d0dab88cf8268c43> <http://xmlns.com/foaf/0.1/givenName> "L"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-02178f3efd528980d0dab88cf8268c43> <http://xmlns.com/foaf/0.1/familyName> "Eliasson"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-02178f3efd528980d0dab88cf8268c43> <http://xmlns.com/foaf/0.1/name> "L Eliasson"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-54d7d48ba6e04e805a2d470a83ba2363> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> .
<https://discovery.ucl.ac.uk/id/person/ext-54d7d48ba6e04e805a2d470a83ba2363> <http://xmlns.com/foaf/0.1/givenName> "A"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-54d7d48ba6e04e805a2d470a83ba2363> <http://xmlns.com/foaf/0.1/familyName> "Schulz"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-54d7d48ba6e04e805a2d470a83ba2363> <http://xmlns.com/foaf/0.1/name> "A Schulz"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-c163fab46d5725ac3c438fb68d67bf37> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> .
<https://discovery.ucl.ac.uk/id/person/ext-c163fab46d5725ac3c438fb68d67bf37> <http://xmlns.com/foaf/0.1/givenName> "A"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-c163fab46d5725ac3c438fb68d67bf37> <http://xmlns.com/foaf/0.1/familyName> "West"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/person/ext-c163fab46d5725ac3c438fb68d67bf37> <http://xmlns.com/foaf/0.1/name> "A West"^^<http://www.w3.org/2001/XMLSchema#string> .
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<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://purl.org/dc/terms/isPartOf> <https://discovery.ucl.ac.uk/id/repository> .
<https://discovery.ucl.ac.uk/id/eprint/10098316> <http://eprints.org/ontology/hasDocument> <https://discovery.ucl.ac.uk/id/document/1108559> .
<https://discovery.ucl.ac.uk/id/document/1108559> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://eprints.org/ontology/Document> .
<https://discovery.ucl.ac.uk/id/document/1108559> <http://www.w3.org/2000/01/rdf-schema#label> "The Challenges of Living with and Caring for a Child or Children Affected by Neuronal Ceroid Lipofuscinosis Type 2 Disease: In-Depth Family Surveys in the United Kingdom and Germany (Text)"^^<http://www.w3.org/2001/XMLSchema#string> .
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