Globally, thalassaemia is considered the most common inherited single-gene disorder. It is more prevalent in the Mediterranean Region (Tadmouri, et al., 2003). For instance, in Jordan there were about 1500 thalassaemia patients with a prevalence rate of about 4 to 6% of Beta Thalassemia Major (BTM) (Hamamy, et al., 2007). Jordan was chosen as the geographical location for this research because of a lack of studies of genetic haematological disorders in the country (Hamamy, et al., 2007). The study aimed to explore and understand parents’ experiences of caring for their children diagnosed with BTM, as well as to identify their coping strategies. In order to achieve this aim, grounded theory was adopted in this study. Data were collected through ‘face-to-face’ semi-structured interviews with forty Jordanian participants: 20 fathers and 20 mothers of children with BTM diagnosed for more than one year at three hospitals in Amman, Irbid and Al-Zarqa. Field notes and memos were also used in data collection. Given the lack of qualitative research in this area the findings of this study provide new, profound insights and better understanding of parents’ experiences and coping strategies caring for their child with BTM. The findings explored the positive and negative sides of parents’ experiences, and how they coped in terms of their knowledge and feelings. They also showed that parents’ experiences were negatively impacted by their lack of knowledge about BTM, and by restrictions from their social and cultural norms. Jordanian parents caring for children with BTM experienced an emotional burden and grief. However, parents were satisfied with the health care services that their children received, and with their role as carers. In addition, strategies such as faith and social support were also found to help parents to cope. Exploring parents’ experiences and coping strategies can assist nurses, health care professionals and stakeholders in recognising and identifying the gaps in parents’ knowledge and needs. Furthermore, this study could assist health care professionals to have better understanding of parents’ emotional and psychological status, to develop new perspectives towards parents of children with BTM and could therefore assist them to deliver quality care to the patients with BTM and their families. This study may also help to raise community awareness of BTM and other haematological genetic disorders by addressing the important role of socio-cultural norms and religion in identifying how parents experience and cope with their situation caring for children with BTM. This thesis recommends that health care professionals need to support and empower parents and provide them with the appropriate and effective options to make their own decisions and adapt to their children with BTM condition.
| Identifer | oai:union.ndltd.org:bl.uk/oai:ethos.bl.uk:659471 |
| Date | January 2014 |
| Creators | Al-Awamreh, Khetam Mohammed |
| Contributors | Draper, Peter; Jolley, Jeremy |
| Publisher | University of Hull |
| Source Sets | Ethos UK |
| Detected Language | English |
| Type | Electronic Thesis or Dissertation |
| Source | http://hydra.hull.ac.uk/resources/hull:11263 |
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