ARTICLE

PARENTS PERCEIVED BURDEN SOCIETAL BEHAVIOR AND QUALITY OF LIFE OF PATIENTS WITH HEMOPHILIA A CASESTUDY OF THE CHILDRENS HOSPITAL MULTAN

06 Pages : 41-47

http://dx.doi.org/10.31703/gsr.2021(VI-I).06      10.31703/gsr.2021(VI-I).06      Published : Mar 2021

Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia: A Case-Study of the Children's Hospital Multan

    The main aim of the study was to explore the perceived socio-economic burden on parents of children suffering from haemophilia and societal behavior towards patient and caregiver. A qualitative approach was utilized to narrate experiences of parenting a hemophilic child. To fulfil the said objective, 14 parents were interviewed by using sequential sampling with the help of an interview guide. All the informants included in the study were taken from Children hospital, Multan. The researcher analyzed all emerging themes from text to disseminate information. Results revealed that the majority of the parents were less educated and belonged to a middle-class background. And having a child with Haemophilia is a life-shifting phenomenon for parents. Lack of awareness regarding disease among mother caregiver was also identified as an addition to parent's miseries. Most patients were suffered from Haemophilia A, with poor health status. However, patient's caregivers were content with behavior of their family members, doctors and other medical staff. On the basis of the present findings, researcher made a recommendation to endorse patient-centred care for haemophilic patients and recognition of patient's illness and reconciliation with society.

    Hemophilic Child, Quality of Life, Societal Behavior, Social Exclusion and Alienation, Interpretative Phenomenological Approach, Children Hospital, Multan
    (1) Saima Afzal
    Assistant Professor, Departmeny of Sociology, Bahauddin Zakariya University, Multan, Punjab, Pakistan.
    (2) Sidra Hussain
    Lacturer (Visiting), Departmeny of Sociology, Bahauddin Zakariya University, Multan, Punjab, Pakistan.
    (3) Hafsa Rehman
    Departmeny of Sociology, Bahauddin Zakariya University, Multan, Punjab, Pakistan.
  • Bertamino, M., Riccardi, F., Banov, L., Svahn, J., & Molinari, A. C. (2017). Hemophilia care in the pediatric age. Journal of clinical medicine, 6(5), 54.
  • Chu, W. M., Ho, H. E., Wang, J. D., Chan, W. C., Liou, Y. S., Ho, W. C., ... & Tsan, Y. T. (2018). Risk of major comorbidities among workers with hemophilia: A 14-year population-based study. Medicine, 97(6).
  • Cutter, S., Guelcher, C., Hunter, S., Rotellini, D., Dunn, S., & Cooper, D. L. (2019). Mild-severe hemophilia B impacts relationships of US adults and children with hemophilia B and their families: results from the B-HERO-S study. Patient related outcome measures, 10, 257.
  • Fischer, K., De Kleijn, P., Negrier, C., Mauser- Bunschoten, E. P., van der Valk, P. R., van Galen, K. P. M., ... & Schutgens, R. (2016). The association of haemophilic arthropathy with Health-Related Quality of Life: a post hoc analysis. Haemophilia, 22(6), 833-840.
  • Goffman, E. (1963). 1963Stigma: Notes on the management of spoiled identity. New York: Simon & Shuster.
  • Myrin Westesson, L., Sparud-Lundin, C., Baghaei, F., Khair, K., von Mackensen, S., Acuña Mora, M., & Wallengren, C. (2019). Burden on parents of children with haemophilia: The impact of socio- demographic and child's medical condition. Journal of clinical nursing, 28(21- 22), 4077-4086.
  • Myrin Westesson, L., Wallengren, C., Baghaei, F., & Sparud-Lundin, C. (2018). Reaching independence through forced learning: learning processes and illness management in parents of children affected by hemophilia. Qualitative health research, 28(14), 2142-2154.
  • Nogami, K., & Shima, M. (2019). New therapies using nonfactor products for patients with hemophilia and inhibitors. Blood, 133(5), 399- 406.
  • Pilapil, M., Coletti, D. J., Rabey, C., & DeLaet, D. (2017). Caring for the caregiver: supporting families of youth with special health care needs. Current Problems in Pediatric and Adolescent Health Care, 47(8), 190-199.
  • Schwartz, C. E., Powell, V. E., & Eldar-Lissai, A. (2017). Measuring hemophilia caregiver burden: validation of the Hemophilia Caregiver Impact measure. Quality of Life Research, 26(9), 2551-2562.
  • Schwartz, C. E., Stark, R. B., Michael, W., & Rapkin, B. D. (2020). Understanding haemophilia caregiver burden: does appraisal buffer the impact of haemophilia on caregivers over time? Psychology & Health, 1-15.
  • Von der Lippe, C., Frich, J. C., Harris, A., & Solbrække, K. N. (2017).
  • Zanon, E., & Pasca, S. (2019). Intracranial haemorrhage in children and adults with haemophilia A and B: a literature review of the last 20 years. Blood Transfusion, 17(5), 378.

Cite this article

    APA : Afzal, S., Hussain, S., & Rehman, H. (2021). Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia: A Case-Study of the Children's Hospital Multan. Global Sociological Review, VI(I), 41-47. https://doi.org/10.31703/gsr.2021(VI-I).06
    CHICAGO : Afzal, Saima, Sidra Hussain, and Hafsa Rehman. 2021. "Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia: A Case-Study of the Children's Hospital Multan." Global Sociological Review, VI (I): 41-47 doi: 10.31703/gsr.2021(VI-I).06
    HARVARD : AFZAL, S., HUSSAIN, S. & REHMAN, H. 2021. Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia: A Case-Study of the Children's Hospital Multan. Global Sociological Review, VI, 41-47.
    MHRA : Afzal, Saima, Sidra Hussain, and Hafsa Rehman. 2021. "Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia: A Case-Study of the Children's Hospital Multan." Global Sociological Review, VI: 41-47
    MLA : Afzal, Saima, Sidra Hussain, and Hafsa Rehman. "Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia: A Case-Study of the Children's Hospital Multan." Global Sociological Review, VI.I (2021): 41-47 Print.
    OXFORD : Afzal, Saima, Hussain, Sidra, and Rehman, Hafsa (2021), "Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia: A Case-Study of the Children's Hospital Multan", Global Sociological Review, VI (I), 41-47
    TURABIAN : Afzal, Saima, Sidra Hussain, and Hafsa Rehman. "Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia: A Case-Study of the Children's Hospital Multan." Global Sociological Review VI, no. I (2021): 41-47. https://doi.org/10.31703/gsr.2021(VI-I).06