TY - STD TI - Battaglia A, South S, Carey JC. Clinical utility gene card for: Wolf-Hirschhorn (4p-) syndrome. Eur J Hum Genet. 2011;19(4). https://doi.org/10.1038/ejhg.2010.186 Epub 2010 Dec 8. ID - ref1 ER - TY - JOUR AU - Cooper, H. AU - Hirschhorn, K. PY - 1961 DA - 1961// TI - Apparent deletion of short arms of one chromosome (4 or 5) in a child with defects of midline fusion JO - Mamm Chrom Nwsl VL - 4 ID - Cooper1961 ER - TY - JOUR AU - Wolf, U. AU - Reinwein, H. AU - Porsch, R. AU - Schroter, R. AU - Baitsch, H. PY - 1965 DA - 1965// TI - Deficiency on the short arms of a chromosome No. 4 JO - Humangenetik VL - 1 ID - Wolf1965 ER - TY - JOUR AU - Hirschhorn, K. AU - Cooper, H. L. AU - Firschein, I. L. PY - 1965 DA - 1965// TI - Deletion of short arms of chromosome 4-5 in a child with defects of midline fusion JO - Humangenetik VL - 1 ID - Hirschhorn1965 ER - TY - BOOK AU - Gorlin, R. J. AU - Cohen, M. M. AU - Levin, L. S. PY - 1990 DA - 1990// TI - Chromosomal Syndromes: Common and/or Well-Know Syndromes. Syndromes of the head and neck PB - Oxford University Press CY - New York ID - Gorlin1990 ER - TY - JOUR AU - Battaglia, A. AU - Filippi, T. AU - Carey, J. C. PY - 2008 DA - 2008// TI - Update on the clinical features and natural history of Wolf-Hirschhorn (4p-) syndrome: experience with 87 patients and recommendations for routine health supervision JO - Am J Med Genet C: Semin Med Genet VL - 148C UR - https://doi.org/10.1002/ajmg.c.30187 DO - 10.1002/ajmg.c.30187 ID - Battaglia2008 ER - TY - JOUR AU - Maas, N. M. AU - Buggenhout, G. AU - Hannes, F. AU - Thienpont, B. AU - Sanlaville, D. AU - Kok, K. PY - 2008 DA - 2008// TI - Genotype-phenotype correlation in 21 patients with Wolf-Hirschhorn syndrome using high resolution array comparative genome hybridisation (CGH) JO - J Med Genet VL - 45 UR - https://doi.org/10.1136/jmg.2007.052910 DO - 10.1136/jmg.2007.052910 ID - Maas2008 ER - TY - JOUR AU - Wright, T. J. AU - Ricke, D. O. AU - Denison, K. AU - Abmayr, S. AU - Cotter, P. D. AU - Hirschhorn, K. PY - 1997 DA - 1997// TI - A transcript map of the newly defined 165 kb Wolf-Hirschhorn syndrome critical region JO - Hum Mol Genet VL - 6 UR - https://doi.org/10.1093/hmg/6.2.317 DO - 10.1093/hmg/6.2.317 ID - Wright1997 ER - TY - JOUR AU - Battaglia, A. AU - Carey, J. C. AU - Wright, T. J. PY - 2001 DA - 2001// TI - Wolf-Hirschhorn (4p-) syndrome JO - Adv Pediatr Infect Dis VL - 48 ID - Battaglia2001 ER - TY - JOUR AU - Battaglia, A. AU - Carey, J. C. AU - South, S. T. PY - 2015 DA - 2015// TI - Wolf-Hirschhorn syndrome: A review and update JO - Am J Med Genet C: Semin Med Genet VL - 169 UR - https://doi.org/10.1002/ajmg.c.31449 DO - 10.1002/ajmg.c.31449 ID - Battaglia2015 ER - TY - JOUR AU - Zollino, M. AU - Murdolo, M. AU - Marangi, G. AU - Pecile, V. AU - Galasso, C. AU - Mazzanti, L. PY - 2008 DA - 2008// TI - On the nosology and pathogenesis of Wolf-Hirschhorn syndrome: genotype-phenotype correlation analysis of 80 patients and literature review JO - Am J Med Genet C: Semin Med Genet VL - 148C UR - https://doi.org/10.1002/ajmg.c.30190 DO - 10.1002/ajmg.c.30190 ID - Zollino2008 ER - TY - JOUR AU - Shannon, N. L. AU - Maltby, E. L. AU - Rigby, A. S. AU - Quarrell, O. W. PY - 2001 DA - 2001// TI - An epidemiological study of Wolf-Hirschhorn syndrome: life expectancy and cause of mortality JO - J Med Genet VL - 38 UR - https://doi.org/10.1136/jmg.38.10.674 DO - 10.1136/jmg.38.10.674 ID - Shannon2001 ER - TY - JOUR AU - Marshall, A. T. PY - 2010 DA - 2010// TI - Impact of chromosome 4p- syndrome on communication and expressive language skills: a preliminary investigation JO - Lang Speech Hear Serv Sch VL - 41 UR - https://doi.org/10.1044/0161-1461(2009/08-0098) DO - 10.1044/0161-1461(2009/08-0098) ID - Marshall2010 ER - TY - JOUR AU - Fisch, G. S. AU - Battaglia, A. AU - Parrini, B. AU - Youngblom, J. AU - Simensen, R. PY - 2008 DA - 2008// TI - Cognitive-behavioral features of children with Wolf-Hirschhorn syndrome: preliminary report of 12 cases JO - Am J Med Genet C: Semin Med Genet VL - 148C UR - https://doi.org/10.1002/ajmg.c.30185 DO - 10.1002/ajmg.c.30185 ID - Fisch2008 ER - TY - JOUR AU - Fisch, G. S. AU - Carpenter, N. AU - Howard-Peebles, P. N. AU - Holden, J. J. AU - Tarleton, J. AU - Simensen, R. PY - 2012 DA - 2012// TI - Developmental trajectories in syndromes with intellectual disability, with a focus on Wolf-Hirschhorn and its cognitive-behavioral profile JO - Am J Intellect Dev Disabil VL - 117 UR - https://doi.org/10.1352/1944-7558-117.2.167 DO - 10.1352/1944-7558-117.2.167 ID - Fisch2012 ER - TY - JOUR AU - Fisch, G. S. AU - Grossfeld, P. AU - Falk, R. AU - Battaglia, A. AU - Youngblom, J. AU - Simensen, R. PY - 2010 DA - 2010// TI - Cognitive-behavioral features of Wolf-Hirschhorn syndrome and other subtelomeric microdeletions JO - Am J Med Genet C: Semin Med Genet VL - 154C UR - https://doi.org/10.1002/ajmg.c.30279 DO - 10.1002/ajmg.c.30279 ID - Fisch2010 ER - TY - JOUR AU - Blanco-Lago, R. AU - Malaga-Dieguez, I. AU - Granizo-Martinez, J. J. AU - Carrera-Garcia, L. AU - Barruz-Galian, P. AU - Lapunzina, P. PY - 2017 DA - 2017// TI - Wolf-Hirschhorn syndrome. Description of a Spanish cohort of 51 cases and a literature review JO - Rev Neurol VL - 64 ID - Blanco-Lago2017 ER - TY - JOUR AU - Blanco-Lago, R. AU - Malaga, I. AU - Garcia-Penas, J. J. AU - Garcia-Ron, A. PY - 2013 DA - 2013// TI - Wolf-Hirschhorn syndrome. A series of 27 patients: their epidemiological and clinical characteristics. The current situation of the patients and the opinions of their caregivers regarding the diagnostic process JO - Rev Neurol VL - 57 ID - Blanco-Lago2013 ER - TY - JOUR AU - Nevado, J. AU - Ho, K. AU - Zollino, M. AU - Blanco, R. AU - Cobaleda, C. AU - Golzio, C. PY - 2020 DA - 2020// TI - International Meeting on Wolf-Hirschhorn Syndrome: Update on the nosology and new insights on the pathogenic mechanisms for seizures and growth delay JO - Am J Med Genet A VL - 182 UR - https://doi.org/10.1002/ajmg.a.61406 DO - 10.1002/ajmg.a.61406 ID - Nevado2020 ER - TY - JOUR PY - 1994 DA - 1994// TI - Development of the WHOQOL: Rationale and Current Status JO - Int J Ment Health VL - 23 UR - https://doi.org/10.1080/00207411.1994.11449286 DO - 10.1080/00207411.1994.11449286 ID - ref20 ER - TY - JOUR PY - 1998 DA - 1998// TI - Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group JO - Psychol Med VL - 28 UR - https://doi.org/10.1017/S0033291798006667 DO - 10.1017/S0033291798006667 ID - ref21 ER - TY - JOUR AU - Fabre, A. AU - Baumstarck, K. AU - Cano, A. AU - Loundou, A. AU - Berbis, J. AU - Chabrol, B. PY - 2013 DA - 2013// TI - Assessment of quality of life of the children and parents affected by inborn errors of metabolism with restricted diet: preliminary results of a cross-sectional study JO - Health Qual Life Outcomes VL - 11 UR - https://doi.org/10.1186/1477-7525-11-158 DO - 10.1186/1477-7525-11-158 ID - Fabre2013 ER - TY - JOUR AU - Guarany, N. R. AU - Vanz, A. P. AU - Wilke, M. V. M. B. AU - Bender, D. D. AU - Borges, M. D. AU - Giugliani, R. PY - 2015 DA - 2015// TI - Mucopolysaccharidosis: Caregiver Quality of Life JO - J Inborn Errors Metab Screen VL - 3 UR - https://doi.org/10.1177/2326409815613804 DO - 10.1177/2326409815613804 ID - Guarany2015 ER - TY - JOUR AU - Landfeldt, E. AU - Lindgren, P. AU - Bell, C. F. AU - Guglieri, M. AU - Straub, V. AU - Lochmüller, H. PY - 2016 DA - 2016// TI - Quantifying the burden of caregiving in Duchenne muscular dystrophy JO - J Neurol VL - 263 UR - https://doi.org/10.1007/s00415-016-8080-9 DO - 10.1007/s00415-016-8080-9 ID - Landfeldt2016 ER - TY - JOUR AU - Lázaro, E. AU - Amayra, I. AU - Paz, J. AU - Beldarrain, A. AU - Alday, E. PY - 2009 DA - 2009// TI - Psychosocial Online Program directed to parents of children and teenagers wih Neuromuscular Disease JO - J eHealth Technol Appl VL - 7 ID - Lázaro2009 ER - TY - STD TI - Vanz AP, Felix TM, da Rocha NS, Schwartz IV. Quality of life in caregivers of children and adolescents with Osteogenesis Imperfecta. Health Qual Life Outcomes 2015;13:4-4. ID - ref26 ER - TY - JOUR AU - Witt, S. AU - Kolb, B. AU - Bloemeke, J. AU - Mohnike, K. AU - Bullinger, M. AU - Quitmann, J. PY - 2019 DA - 2019// TI - Quality of life of children with achondroplasia and their parents - a German cross-sectional study JO - Orphanet J Rare Dis VL - 14 UR - https://doi.org/10.1186/s13023-019-1171-9 DO - 10.1186/s13023-019-1171-9 ID - Witt2019 ER - TY - JOUR AU - Ahanotu, C. AU - Ibikunle, P. AU - Adebisi, H. PY - 2018 DA - 2018// TI - Burden of caregiving, social support and quality of life of informal caregivers of patients with cerebral palsy JO - Turk J Kinesiol VL - 4 UR - https://doi.org/10.31459/turkjkin.418491 DO - 10.31459/turkjkin.418491 ID - Ahanotu2018 ER - TY - JOUR AU - Feeley, C. A. AU - Turner-Henson, A. AU - Christian, B. J. AU - Avis, K. T. AU - Heaton, K. AU - Lozano, D. PY - 2014 DA - 2014// TI - Sleep quality, stress, caregiver burden, and quality of life in maternal caregivers of young children with bronchopulmonary dysplasia JO - J Pediatr Nurs VL - 29 UR - https://doi.org/10.1016/j.pedn.2013.08.001 DO - 10.1016/j.pedn.2013.08.001 ID - Feeley2014 ER - TY - JOUR AU - Ganjiwale, D. AU - Ganjiwale, J. AU - Sharma, B. AU - Mishra, B. PY - 2016 DA - 2016// TI - Quality of life and coping strategies of caregivers of children with physical and mental disabilities JO - J Fam Med Prim Care VL - 5 UR - https://doi.org/10.4103/2249-4863.192360 DO - 10.4103/2249-4863.192360 ID - Ganjiwale2016 ER - TY - JOUR AU - Lv, R. AU - Wu, L. AU - Jin, L. AU - Lu, Q. AU - Wang, M. AU - Qu, Y. PY - 2009 DA - 2009// TI - Depression, anxiety and quality of life in parents of children with epilepsy JO - Acta Neurol Scand VL - 120 UR - https://doi.org/10.1111/j.1600-0404.2009.01184.x DO - 10.1111/j.1600-0404.2009.01184.x ID - Lv2009 ER - TY - JOUR AU - Roncada, C. AU - Dias, C. P. AU - Goecks, S. AU - Cidade, S. E. AU - Pitrez, P. M. PY - 2015 DA - 2015// TI - Usefulness of the WHOQOL-BREF questionnaire in assessing the quality of life of parents of children with asthma JO - Rev Paul Pediatr VL - 33 UR - https://doi.org/10.1016/j.rpped.2015.01.007 DO - 10.1016/j.rpped.2015.01.007 ID - Roncada2015 ER - TY - JOUR AU - Pelentsov, L. J. AU - Fielder, A. L. AU - Laws, T. A. AU - Esterman, A. J. PY - 2016 DA - 2016// TI - The supportive care needs of parents with a child with a rare disease: results of an online survey JO - BMC Fam Pract VL - 17 UR - https://doi.org/10.1186/s12875-016-0488-x DO - 10.1186/s12875-016-0488-x ID - Pelentsov2016 ER - TY - JOUR AU - Picci, R. AU - Oliva, F. AU - Trivelli, F. AU - Carezana, C. AU - Zuffranieri, M. AU - Ostacoli, L. PY - 2013 DA - 2013// TI - Emotional Burden and Coping Strategies of Parents of Children with Rare Diseases JO - J Child Fam Stud VL - 24 UR - https://doi.org/10.1007/s10826-013-9864-5 DO - 10.1007/s10826-013-9864-5 ID - Picci2013 ER - TY - JOUR AU - Carona, C. AU - Silva, N. AU - Crespo, C. AU - Canavarro, M. C. PY - 2014 DA - 2014// TI - Caregiving burden and parent-child quality of life outcomes in neurodevelopmental conditions: the mediating role of behavioral disengagement JO - J Clin Psychol Med Settings VL - 21 UR - https://doi.org/10.1007/s10880-014-9412-5 DO - 10.1007/s10880-014-9412-5 ID - Carona2014 ER - TY - JOUR AU - Fairfax, A. AU - Brehaut, J. AU - Colman, I. AU - Sikora, L. AU - Kazakova, A. AU - Chakraborty, P. PY - 2019 DA - 2019// TI - A systematic review of the association between coping strategies and quality of life among caregivers of children with chronic illness and/or disability JO - BMC Pediatr VL - 19 UR - https://doi.org/10.1186/s12887-019-1587-3 DO - 10.1186/s12887-019-1587-3 ID - Fairfax2019 ER - TY - JOUR AU - Currie, G. AU - Szabo, J. PY - 2019 DA - 2019// TI - “It is like a jungle gym, and everything is under construction”: The parent's perspective of caring for a child with a rare disease JO - Child Care Health Dev VL - 45 UR - https://doi.org/10.1111/cch.12628 DO - 10.1111/cch.12628 ID - Currie2019 ER - TY - BOOK AU - Colombo, F. AU - Llena-Nozal, A. AU - Mercier, J. AU - Tjadens, F. PY - 2011 DA - 2011// TI - Help wanted? providing and paying for long-term care PB - OECD CY - Paris UR - https://doi.org/10.1787/9789264097759-en DO - 10.1787/9789264097759-en ID - Colombo2011 ER - TY - JOUR AU - Lucas-Carrasco, R. PY - 2012 DA - 2012// TI - The WHO quality of life (WHOQOL) questionnaire: Spanish development and validation studies JO - Qual Life Res VL - 21 UR - https://doi.org/10.1007/s11136-011-9926-3 DO - 10.1007/s11136-011-9926-3 ID - Lucas-Carrasco2012 ER - TY - JOUR PY - 2006 DA - 2006// TI - A cross-cultural study of spirituality, religion, and personal beliefs as components of quality of life JO - Soc Sci Med VL - 62 UR - https://doi.org/10.1016/j.socscimed.2005.08.001 DO - 10.1016/j.socscimed.2005.08.001 ID - ref40 ER - TY - JOUR AU - Zarit, S. H. AU - Reever, K. E. AU - Bach-Peterson, J. PY - 1980 DA - 1980// TI - Relatives of the impaired elderly: correlates of feelings of burden JO - Gerontologist VL - 20 UR - https://doi.org/10.1093/geront/20.6.649 DO - 10.1093/geront/20.6.649 ID - Zarit1980 ER - TY - JOUR AU - Martín, M. AU - Salvadó, I. AU - Nadal, S. AU - Miji, C. AU - Rico, J. M. AU - Lanz, P. PY - 1996 DA - 1996// TI - Adaptación para nuestro medio de la Escala de Sobrecarga del Cuidador (caregiver burden interview) de Zarit [Adaptation to our setting of Zarit’s Caregiver Burden Interview] JO - Rev Gerontol VL - 6 ID - Martín1996 ER - TY - BOOK AU - Derogatis, L. R. PY - 1977 DA - 1977// TI - SCL-90-R: Administration, Scoring and Procedures: Manual 1  PB - Clinical Psychometric Research CY - Baltimore ID - Derogatis1977 ER - TY - BOOK AU - Derogatis, L. R. PY - 2001 DA - 2001// TI - Cuestionario de 90 síntomas (SCL-90-R)  PB - TEA Ediciones, S.A CY - Madrid ID - Derogatis2001 ER - TY - JOUR AU - Tobin, D. L. AU - Holroyd, K. A. AU - Reynolds, R. V. AU - Wigal, J. K. PY - 1989 DA - 1989// TI - The hierarchical factor structure of the coping strategies inventory JO - Cogn Ther Res VL - 13 UR - https://doi.org/10.1007/BF01173478 DO - 10.1007/BF01173478 ID - Tobin1989 ER - TY - JOUR AU - Cano García, F. J. AU - Rodríguez Franco, L. AU - García Martínez, J. PY - 2007 DA - 2007// TI - Adaptación española del Inventario de Estrategias de Afrontamiento JO - Actas Esp Psiquiatr VL - 35 ID - Cano García2007 ER - TY - JOUR AU - Magliano, L. AU - Fadden, G. AU - Madianos, M. AU - Almeida, J. M. AU - Held, T. AU - Guarneri, M. PY - 1998 DA - 1998// TI - Burden on the families of patients with schizophrenia: results of the BIOMED I study JO - Soc Psychiatry Psychiatr Epidemiol VL - 33 UR - https://doi.org/10.1007/s001270050073 DO - 10.1007/s001270050073 ID - Magliano1998 ER - TY - JOUR AU - Ribe, J. M. AU - Salamero, M. AU - Perez-Testor, C. AU - Valero, A. AU - Garcia, M. C. PY - 2015 DA - 2015// TI - Spanish version of the social network questionnaire in schizophrenia patients’ caregivers JO - Schizophr Res VL - 164 UR - https://doi.org/10.1016/j.schres.2015.03.008 DO - 10.1016/j.schres.2015.03.008 ID - Ribe2015 ER - TY - JOUR AU - Lozano Serrano, C. AU - Ortiz Lobo, A. AU - González González, R. PY - 2011 DA - 2011// TI - Análisis comparativo de los pacientes con y sin trastorno mental diagnosticable JO - Rev Asoc Esp Neuropsiquiatría VL - 31 UR - https://doi.org/10.4321/S0211-57352011000300003 DO - 10.4321/S0211-57352011000300003 ID - Lozano Serrano2011 ER - TY - JOUR AU - González-Blanch, C. AU - Hernández-de-Hita, F. AU - Muñoz-Navarro, R. AU - Ruíz-Rodríguez, P. AU - Medrano, L. A. AU - Cano-Vindel, A. PY - 2018 DA - 2018// TI - The association between different domains of quality of life and symptoms in primary care patients with emotional disorders JO - Sci Rep VL - 8 UR - https://doi.org/10.1038/s41598-018-28995-6 DO - 10.1038/s41598-018-28995-6 ID - González-Blanch2018 ER - TY - BOOK AU - González de Rivera, J. L. AU - las Cuevas, C. AU - Rodríguez-Albuín, M. J. AU - Rodríguez-Pulido, F. PY - 2002 DA - 2002// TI - El cuestionario de 90 síntomas (adaptación española del SCL-90R de L.R. Derogatis) PB - TEA CY - Madrid ID - González de Rivera2002 ER - TY - BOOK PY - 2018 DA - 2018// TI - Rare disease caregiving in America ID - ref52 ER - TY - JOUR AU - Morel, T. AU - Aymé, S. AU - Cassiman, D. AU - Simoens, S. AU - Morgan, M. AU - Vandebroek, M. PY - 2016 DA - 2016// TI - Quantifying benefit-risk preferences for new medicines in rare disease patients and caregivers JO - Orphanet J Rare Dis VL - 11 UR - https://doi.org/10.1186/s13023-016-0444-9 DO - 10.1186/s13023-016-0444-9 ID - Morel2016 ER - TY - JOUR AU - Piran, P. AU - Khademi, Z. AU - Tayari, N. AU - Mansouri, N. PY - 2017 DA - 2017// TI - Caregiving burden of children with chronic diseases JO - Electron Physician VL - 9 UR - https://doi.org/10.19082/5380 DO - 10.19082/5380 ID - Piran2017 ER - TY - JOUR AU - Tejada-Ortigosa, E. M. AU - Flores-Rojas, K. AU - Moreno-Quintana, L. AU - Munoz-Villanueva, M. C. AU - Perez-Navero, J. L. AU - Gil-Campos, M. PY - 2019 DA - 2019// TI - Health and socio-educational needs of the families and children with rare metabolic diseases: Qualitative study in a tertiary hospital JO - An Pediatr (Barc) VL - 90 UR - https://doi.org/10.1016/j.anpedi.2018.03.003 DO - 10.1016/j.anpedi.2018.03.003 ID - Tejada-Ortigosa2019 ER - TY - JOUR AU - Toledano-Toledano, F. AU - LR, M. PY - 2018 DA - 2018// TI - Factors associated with anxiety in family caregivers of children with chronic diseases JO - BioPsychoSoc Med VL - 12 UR - https://doi.org/10.1186/s13030-018-0139-7 DO - 10.1186/s13030-018-0139-7 ID - Toledano-Toledano2018 ER - TY - BOOK AU - Courbier, S. AU - Berjonneau, E. PY - 2017 DA - 2017// TI - Juggling care and daily life: the balancing act of the rare disease community. A Rare Barometer survey ID - Courbier2017 ER - TY - STD TI - INE. Men and Women in Spain. National Statistics Institute. Available from: http://www.ine.e. UR - http://www.ine.e ID - ref58 ER - TY - JOUR AU - Bowd, A. D. AU - Loos, C. H. PY - 1996 DA - 1996// TI - Needs, morale and coping strategies of caregivers for persons with Alzheimer's disease in isolated communities in Canada JO - Am J Alzheimers Dis VL - 11 UR - https://doi.org/10.1177/153331759601100305 DO - 10.1177/153331759601100305 ID - Bowd1996 ER - TY - STD TI - Villas N, Meskis MA, Goodliffe S. Dravet syndrome: Characteristics,comorbidities, and caregiver concerns. Epilepsy Behav. 2017;74:81–6. ID - ref60 ER - TY - STD TI - Zurynski Y, Deverell M, Dalkeith T, Johnson S, Christodoulou J, Leonard H, et al. Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays. Orphanet J Rare Dis. 2017;12(1):68. ID - ref61 ER - TY - STD TI - Bouldin ED, Shaull L, Andresen EM, Edwards VJ, Financial MGLC. Health Barriers and Caregiving-Related Difficulties Among Rural and Urban Caregivers. J Rural Health. 2018;34(3):263–74. ID - ref62 ER - TY - STD TI - O'Connell ME, Germaine N, Burton R, Stewart N, Morgan DG. Degree of rurality is not related to dementia caregiver distress, burden, and coping in a predominantly rural sample. J Appl Gerontol. 2013;32(8):1015–29. ID - ref63 ER - TY - STD TI - Pinquart M, Sörensen S. Associations of Stressors and Uplifts of Caregiving With Caregiver Burden and Depressive Mood: A Meta-Analysis. Psychsocgerontology. 2003;58(2):P112–28. ID - ref64 ER - TY - STD TI - Rahmani F, Ranjbar F, Hosseinzadeh M, Razavi SS, Dickens GL, Vahidi M. Coping strategies of family caregivers of patients with schizophrenia in Iran: A cross-sectional survey. Int J Nurs Sci. 2019;6(2):148–53. ID - ref65 ER - TY - STD TI - Nag HE, Bergsaker DK, Hunn BS, Schmidt S, Hoxmark LB. A structured assessment of motor function, behavior, and communication in patients with Wolf-Hirschhorn syndrome. Eur J Med Genet. 2017;60(11):610–7. ID - ref66 ER - TY - STD TI - Schoeder CE, Remer R. Perceived Social Support and Caregiver Strain in Caregivers of Children with Tourette’s Disorder. J Child Fam Stud. 2007;16(6):888–901. ID - ref67 ER - TY - STD TI - Chivukula U, Kota S, Nandinee D. Burden experience of caregivers of acute lymphoblastic leukemia: Impact of coping and spirituality. Indian J Palliat Care. 2018;24(2):189–95. ID - ref68 ER - TY - STD TI - Cavazza M, Kodra Y, Armeni P, De Santis M, Lopez-Bastida J, Linertova R, et al. Social/economic costs and health-related quality of life in patients with Duchenne muscular dystrophy in Europe. Eur J Health Econ. 2016;17(Suppl 1):19–29. ID - ref69 ER - TY - STD TI - Kayadjanian N, Schwartz L, Farrar E, Comtois KA, Strong TV. High levels of caregiver burden in Prader-Willi syndrome. PLoS One. 2018;13(3):e0194655. ID - ref70 ER - TY - STD TI - Ribe Buitron JM, Perez Testor C, Muros Guijarro R, Nofuentes Garcia C. Considerations about the interpretation of the Zarit scale in caregivers of patients with schizophrenia. Aten Primaria. 2018;50(7):443–4. ID - ref71 ER - TY - STD TI - Campbell JD, Whittington MD, Kim CH, VanderVeen GR, Knupp KG, Gammaitoni A. Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey. Epilepsy Behav. 2018;80:152–6. ID - ref72 ER - TY - STD TI - Jensen MP, Liljenquist KS, Bocell F, Gammaitoni AR, Aron CR, Galer BS, et al. Life impact of caregiving for severe childhood epilepsy: Results of expert panels and caregiver focus groups. Epilepsy Behav. 2017;74:135–43. ID - ref73 ER - TY - STD TI - Khanna R, Madhavan SS, Smith MJ, Patrick JH, Tworek C, Becker-Cottrill B. Assessment of Health-Related Quality of Life Among Primary Caregivers of Children with Autism Spectrum Disorders. J Autism Dev Disord. 2011;41(9):1214–27. ID - ref74 ER - TY - STD TI - Khangura SD, Karaceper MD, Trakadis Y, Mitchell JJ, Chakraborty P, Tingley K, et al. Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease. BMC Pediatr. 2015;15:x. ID - ref75 ER - TY - STD TI - Lee MM, Lee TM, Ng PK, Hung AT, Au AM, Wong VC. Psychosocial Well-Being of Carers of People with Epilepsy in Hong Kong. Epilepsy Behav. 2002;3(2):147–57. ID - ref76 ER - TY - STD TI - Lowes L, Clark TS, Noritz G. Factors associated with caregiver experience in families with a child with cerebral palsy. J Pediatr Rehabil Med. 2016;9(1):65. ID - ref77 ER - TY - STD TI - Holly Lanum Peay. Community-engaged approaches to explore research priorities in Duchenne and Becker muscular dystrophyDepartment of Clinical Genetics, Faculty of Medicine / Leiden University Medical Center (LUMC), Leiden University; 2015. ID - ref78 ER - TY - JOUR AU - Bose, M. AU - Mahadevan, M. AU - Schules, D. R. AU - Coleman, R. K. AU - Gawron, K. M. AU - Gamble, M. B. PY - 2019 DA - 2019// TI - Emotional experience in parents of children with Zellweger spectrum disorders: A qualitative study JO - Mol Genet Metab Rep VL - 19 UR - https://doi.org/10.1016/j.ymgmr.2019.100459 DO - 10.1016/j.ymgmr.2019.100459 ID - Bose2019 ER - TY - JOUR AU - Jensen, M. P. AU - Brunklaus, A. AU - Dorris, L. AU - Zuberi, S. M. AU - Knupp, K. G. AU - Galer, B. S. PY - 2017 DA - 2017// TI - The humanistic and economic burden of Dravet syndrome on caregivers and families: Implications for future research JO - Epilepsy Behav VL - 70 UR - https://doi.org/10.1016/j.yebeh.2017.02.003 DO - 10.1016/j.yebeh.2017.02.003 ID - Jensen2017 ER - TY - JOUR AU - Dellve, L. AU - Samuelsson, L. AU - Tallborn, A. AU - Fasth, A. AU - Hallberg, L. R. PY - 2006 DA - 2006// TI - Stress and well-being among parents of children with rare diseases: a prospective intervention study JO - J Adv Nurs VL - 53 UR - https://doi.org/10.1111/j.1365-2648.2006.03736.x DO - 10.1111/j.1365-2648.2006.03736.x ID - Dellve2006 ER - TY - STD TI - Khanna A, Anusha P, Patel P, Ganjiwale J, Nimbalkar S. Social, Psychological and Financial Burden on Caregivers of Children with Chronic Illness: A Cross-sectional Study. Indian J Pediatr. 2015;82. ID - ref82 ER - TY - JOUR AU - Pelentsov, L. J. AU - Laws, T. A. AU - Esterman, A. J. PY - 2015 DA - 2015// TI - The supportive care needs of parents caring for a child with a rare disease: A scoping review JO - Disabil Health J VL - 8 UR - https://doi.org/10.1016/j.dhjo.2015.03.009 DO - 10.1016/j.dhjo.2015.03.009 ID - Pelentsov2015 ER - TY - JOUR AU - Andrade, E. M. AU - Geha, L. M. AU - Duran, P. AU - Suwwan, R. AU - Machado, F. AU - Rosario, M. C. PY - 2016 DA - 2016// TI - Quality of Life in Caregivers of ADHD Children and Diabetes Patients JO - Front Psychiatry VL - 7 UR - https://doi.org/10.3389/fpsyt.2016.00127 DO - 10.3389/fpsyt.2016.00127 ID - Andrade2016 ER - TY - JOUR AU - Awadalla, A. W. AU - Ohaeri, J. U. AU - Al-Awadi, S. AU - Tawfiq, A. M. PY - 2006 DA - 2006// TI - Diabetes mellitus patients’ family caregivers’ subjective quality of life JO - J Natl Med Assoc VL - 98 ID - Awadalla2006 ER - TY - JOUR AU - Hawken, T. AU - Turner-Cobb, J. AU - Barnett, J. PY - 2018 DA - 2018// TI - Coping and adjustment in caregivers: A systematic review JO - Health Psychol Open VL - 5 UR - https://doi.org/10.1177/2055102918810659 DO - 10.1177/2055102918810659 ID - Hawken2018 ER - TY - BOOK AU - Lazarus, R. S. AU - Folkman, S. PY - 1984 DA - 1984// TI - Stress, appraisal, and coping PB - Springer publishing company CY - New York ID - Lazarus1984 ER - TY - JOUR AU - Lyons, A. M. AU - Leon, S. C. AU - Phelps, C. E. R. AU - Dunleavy, A. M. PY - 2010 DA - 2010// TI - The impact of child symptom severity on stress among parents of children with ASD: The moderating role of coping styles JO - J Child Fam Stud VL - 19 UR - https://doi.org/10.1007/s10826-009-9323-5 DO - 10.1007/s10826-009-9323-5 ID - Lyons2010 ER - TY - JOUR AU - Pakenham, K. I. AU - Bursnall, S. PY - 2006 DA - 2006// TI - Relations between social support, appraisal and coping and both positive and negative outcomes for children of a parent with multiple sclerosis and comparisons with children of healthy parents JO - Clin Rehabil VL - 20 UR - https://doi.org/10.1191/0269215506cre976oa DO - 10.1191/0269215506cre976oa ID - Pakenham2006 ER - TY - BOOK AU - Wen, C. AU - Chu, S. PY - 2019 DA - 2019// TI - Parenting stress and depressive symptoms in the family caregivers of children with genetic or rare diseases: The mediation effects of coping strategies and self-esteem ID - Wen2019 ER - TY - JOUR AU - Wallander, J. L. AU - Varni, J. W. PY - 1998 DA - 1998// TI - Effects of pediatric chronic physical disorders on child and family adjustment JO - J Child Psychol Psychiatry VL - 39 UR - https://doi.org/10.1111/1469-7610.00302 DO - 10.1111/1469-7610.00302 ID - Wallander1998 ER - TY - JOUR AU - Carver, C. S. AU - Scheier, M. F. AU - Weintraub, J. K. PY - 1989 DA - 1989// TI - Assessing coping strategies: a theoretically based approach JO - J Pers Soc Psychol VL - 56 UR - https://doi.org/10.1037/0022-3514.56.2.267 DO - 10.1037/0022-3514.56.2.267 ID - Carver1989 ER - TY - JOUR AU - Martinez, O. AU - Jometon, A. AU - Perez, M. AU - Lazaro, E. AU - Amayra, I. AU - Lopez-Paz, J. F. PY - 2014 DA - 2014// TI - Effectiveness of teleassistance at improving quality of life in people with neuromuscular diseases JO - Span J Psychol VL - 17 UR - https://doi.org/10.1017/sjp.2014.89 DO - 10.1017/sjp.2014.89 ID - Martinez2014 ER -