Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia

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

Disease · Family medicine · Haemophilia · Health care · Psychiatry · Qualitative research · Adolescent and Pediatric Healthcare · Medicine · Nursing · Psychology · Pediatrics