Impacto sociobiomédico de la sobreprotección:el Síndrome de Wolfram como ejemplo paradigmático

  1. Esteban Bueno, Gema
  2. Guerra, Jose Manuel
  3. Coca, Juan R.
  4. Ruiz Castañeda, Dyanne
Revista:
Cultura de los cuidados: Revista de Enfermería y Humanidades

ISSN: 1699-6003

Ano de publicación: 2022

Número: 62

Páxinas: 260-278

Tipo: Artigo

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Outras publicacións en: Cultura de los cuidados: Revista de Enfermería y Humanidades

Resumo

The aim of this article is to analyze the possible existence of overprotection, its social impact, and its effects on the quality of life of people with Wolfram syndrome. The research method is mix: quantitative and qualitative. The quantitative study is based on a correlational-descriptive observational design. The sample consisted of 31 patients aged between 15 and 46 years, diagnosed with Wolfram syndrome in Spain. The quality of life of the patients was analyzed through a questionnaire and the social behaviors of overprotection through a structured ad-hoc interview. On the other hand, a qualitative questionnaire on risk perception and social uncertainty was made. The social uncertainty to which families are subjected leads them to sometimes take overprotective behaviors. However, our results show that this happens more in the group of patients without partners, as well as in the scale absence of overload and free time. The group of people with a partner has greater social support, less overprotection, greater physical/psychological well-being, absence of work overload/leisure time and overall quality of life.

Referencias bibliográficas

  • Barrett T.G., Bundey, S.E., y Macleod, A.F. (1995). Neurodegeneration and diabetes: UK nationwide study of Wolfram (DIDMOAD) syndrome. Lancet, 346, 1458-1463. https://doi.org/10.1016/s0140-6736(95)92473-6.
  • Bauman, Z. (2004). Modernidad líquida. México: Fondo de cultura económica.
  • Bederian-Gardner, D., S.D. Hobbs, S.D., Ogle, C.M., Goodman, G.S., Cordón, I.M., Bakanosky, S., Narr, R., Chae, Y., Chong, J.Y., y NYTD/CYTD Research Group. (2018). Instability in the lives of Foster and nonfoster youth: Mental health impediments and attachment insecurities. Children and Youth Services Review, 84, 159-167. https://doi.org/10.1016/j.childyouth.2017.10.019.
  • Bericat, E. (2016). The sociology of emotions: Four decades of progress. Current Sociology, 64(3), 491-513. https://doi.org/10.1177%2F0011392115588355.
  • Bericat E. (2018). Excluidos de la felicidad. La estratificación social del bienestar emocional en España. Madrid: Centro de Investigaciones Sociológicas.
  • Bourdieu, P. (1990). Sociología y cultura. México: Grijalbo
  • Castillo T. (2007). Déjame intentarlo. La discapacidad: Hacia una visión creativa de las limitaciones humanas. Barcelona: Ediciones CEAC España.
  • Coca, J.R., Esteban-Bueno, G., y Soto, A. (2019). Análisis socio-hermenéutico de los aspectos sociales relacionados con el Síndrome de Wolfram. En J. R. Coca (Ed.) Enfermedades raras. Contribuciones a la investigación social y biomédica (pp. 99-113). Soria: CEASGA publishing. http://uvadoc.uva.es/handle/10324/34878
  • Dizy, D., de la Torre, I., Ruiz, O., Fernández, M., Ayuso, L., Miguel, L., y Rogero, J. (2010). Dependencia y familia: una perspectiva socio-económica. Madrid: IMSERSO.
  • Eckersley, R. (2015). Beyond inequality: Acknowledging the complexity of social determinants of health. Social Science & Medicine, 147: 121-125. https://doi.org/10.1016/j.socscimed.2015.10.052
  • Epstein, J., y Sanders, M. (2002). Family, school and community patnerships. En M. Bornstein (Ed.) Hand Book of Parenting: Practical Issues in Parenting (pp. 407-437). Mahwah, NJ: Lawrence.
  • Esteban, G. (2015). Aproximación al tratamiento integral del Síndrome de Wolfram. Aspectos biopsicosociales. Sevilla: Círculo Rojo.
  • Esteban, G., y Gómez, F.M. (2006). Manifestaciones clínicas y retraso diagnóstico en el Síndrome de Wolfram. Revista Clínica Española, 206(7): 332-335. https://doi.org/10.1157/13090481
  • Esteban, G., García, M.A., y Durán, S. (2010). The quality of life of parents of Wolfram Syndrome patients analyzed. Salud (i) Ciencia, 17(5): 444-448.
  • Esteban, G., Ruiz-Castañeda, D., Martínez, J.R., Romero, M., y Carrillo, P. (2018). Natural history and clinical characteristics of 50 patients with Wolfram syndrome. Endocrine, 61(3): 440-446. https://doi.org/10.1007/s12020-018-1608-2
  • FEDER. (2009). Estudio sobre situación de necesidades sociosanitarias de las personas con Enfermedades Raras en España: Estudio ENSERio. Madrid: Obra social de Caja Madrid.
  • Giddens, A. (1997). Modernidad e identidad del yo. Barcelona: Península.
  • Grau, C. (2013). Fomentar la resiliencia en familias con enfermedades crónicas pediátricas. Revista Española de Discapacidad, 1(1): 195-212. https://doi.org/10.5569/2340-5104.01.01.10.
  • Hemm, C., Dagnan, D., y Meyer, T.D. (2018). Social anxiety and parental overprotection in young adults with and without intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 31(3): 360-368. https://doi.org/10.1111/jar.12413
  • Jaeger, G., Röjvik, A., y Berglund, D. (2015). Participation in society for people with a rare diagnosis. Disabillity and Health Journal, 8(1): 44-50. https://doi.org/10.1016/j.dhjo.2014.07.004.
  • Krabbenborg, L., Vissers, L.E.L.M., Schieving, J., Kleefstra, T., Kamsteeg, E.J., Veltman, J.A., Willemsen, M.A., y Van der Burg, S. (2016). Understanding the Psychosocial Effects of WES Test Results on Parents of Children with Rare Diseases. Journal of Genetic Counseling, 25: 1207–1214. https://doi.org/10.1007/s10897-016-9958-5
  • Luhmann, N. (1992). Sociología del riesgo. México: Universidad Iberoamericana/Universidad de Guadalajara.
  • Marshall, B.A., Permutt, M.A., Paciorkowski, A.R., Hoekel, J., Karzon, R., Wasson, R., Viehover, A., White, N.H., Shimony, J.S., Manwaring, L., Austin, P., Hullar, T.E., Hershey, T., y Washington University Wolfram Study Group. (2013). Phenotypic characteristics of early Wolfram syndrome. Orphanet Journal of Rare Diseases, 8(1): 64. https://dx.doi.org/10.1186%2F1750-1172-8-64.
  • Mathur-Marchesani, A. (1998). The effects of social support and overprotectiveness on the perception of illness and psychosocial recovery of cardiac rehabilitation patients. Washington, D.C.: George Washington University.
  • Myers, R., Balsamo, L., Lu, X., Devidas, M., Hunger, S., Carroll, W., y Kadan, N. (2014). A prospective study of anxiety, depression, and behavioral changes in the first year after diagnosis of childhood acute lymphoblastic leukemia. Cancer, 120(9): 1417–1425. https://doi.org/10.1002/cncr.28578
  • Pickett, K.A., Duncan, R.P., Paciorkowski, A.R., Permutt, M.A., Marshall, B., Hershey, T., Earhart, G.M., y Washington University Wolfram Study Group. (2012). Balance impairment in individuals with Wolfram syndrome. Gait & Posture, 36(3): 619–624. https://dx.doi.org/10.1016%2Fj.gaitpost.2012.06.008.
  • Rigoli, L., Bramanti, P., Di Bella, C., y De Luca, F. (2018). Genetic and clinical aspects of Wolfram syndrome 1, a severe neurodegenerative disease. Pediatric Research, 83: 921–929. https://doi.org/10.1038/pr.2018.17
  • Roche, J.A. (2009). La sociedad evanescente. Barcelona: Anthropos.
  • Ruiz, M.A., y Baca, E. (1993). Design and validation of “Quality of life Questionnaire”: A Generic Health-Related Quality of life instrument. European Journal of Psychological Assessment, 9(1): 19-32.
  • Schepers, S.A., Long, A.M., Russell, K., y Phipps, S. (2018). Youth and parent perceptions of parenting in childhood cancer survivors and healthy peers. Supportive Care in Cancer, 26(12): 4143-4149. https://doi.org/10.1007/s00520-018-4285-z
  • Schiffrin, H., Liss, M., Miles-McLean, H., Geary, K., Erchull, M., y Tashner, T. (2013). Helping or hovering? The effects of helicopter parenting on college students' well-being. Journal of Child and Family Studies, 23: 548-557. https://doi.org/10.1007/s10826-013-9716-3
  • Shibata, M., Ninomiya, T., Anno, K., Kawata, H., Iwaki, R., Sawamoto, R., Kubo, C., Kiyohara, Y., Sudo, N., y Hosoi, M. (2016). Perceived inadequate care and excessive overprotection during childhood are associated with greater risk of sleep disturbance in adulthood: the Hisayama Study. BMC Psychiatry, 16: 215. https://doi.org/10.1186/s12888-016-0926-2
  • Twenge, J.M., y Kasser, T. (2013). Generational changes in materialism and work centrality, 1976-2007: associations with temporal changes in societal insecurity and materialistic role modeling. Personality and Social Psychology Bulletin, 39(7): 883-897. https://doi.org/10.1177%2F0146167213484586
  • Urano F. (2016). Wolfram Syndrome: Diagnosis, Management, and Treatment. Current diabetes reports, 16(1): 6. https://dx.doi.org/10.1007%2Fs11892-015-0702-6
  • Zniva, R., Pauli, P., y Schulz, S.M. (2017). Overprotective social support leads to increased cardiovascular and subjective stress reactivity. Biological Psychology, 123: 226-234. https://doi.org/10.1016/j.biopsycho.2016.12.009
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