@article{e1d6b6feb12d4aae82e4ee6fcfec074f,
title = "Policymakers' and patients{\textquoteright} perspectives on breast cancer management in the Gaza Strip-Palestine: A qualitative study",
abstract = "Purpose: This study aimed to explore the perspectives of policymakers and patients on breast cancer (BC) management in the Gaza Strip. Methods: A descriptive qualitative study design was employed using semi-structured in-depth interviews with 13 policymakers and focus group discussions with 19 BC patients. The four criteria presented by Lincoln and Guba were used to evaluate the validity and reliability. Data were analysed using conventional content analysis approach. Results: Three categories were generated from the qualitative data analysis: (1) limited human resources in the BC management, (2) inadequate institutional level service provision in the BC management, and (3) a lack of policy level support for the BC management. The current health services provided to Gazan BC patients are either fragmented or partially unavailable. The roles and responsibilities at the policy, system and individual levels were ambiguous. Policymakers attributed the fragmented BC services to the shortage of qualified healthcare professionals, inadequate training programmes for the staff, and lack of coordination among health institutions. Some patients expressed an insufficient knowledge about cancer screening tests, while others ignored screening for cultural reasons. Conclusion: Gaza's BC services are fragmented and not well-organised and they have received inadequate attention at the leadership and governance levels. The government in the Gaza Strip should strengthen its leadership to upgrade and develop the policies and strategies necessary for proper BC management, including an improved information system and cooperation with national and international institutions to secure funding for developing BC services and ensure medication availability.",
keywords = "Breast cancer, Evaluation of services, Gaza, Policymakers, Qualitative study",
author = "Eid, {Mo'min Khalil} and Hammoda Abu-Odah and Wehedi, {Dalia Talaat} and Su, {Jing Jing} and Yehia Abed",
note = "Funding Information: Breast cancer (BC) is the most common type of cancer in women and the leading cause of cancer death and disability-adjusted life-years lost globally (Ferlay et al., 2019; World Health Organisation, 2022a,b). While BC occurs worldwide, its incidence, mortality, and survival rates vary by country and region, with approximately half of BC diagnoses and deaths occurring in low and middle-income countries (LMICs) (Boyle et al., 2012). Furthermore, most BC patients in LMICs are in the advanced stages of the disease (Egner, 2010; Tesfaw et al., 2021), putting a strain on the LMICs{\textquoteright} healthcare system directly and indirectly. In Palestine, BC is the most common type of cancer, representing 18.7% of all types of cancer, and ranks first (34.3%) among female cancers (Palestinian Health Information Centre, 2021). Palestine has the higher incidence and deaths rate of 53.5 and 22.6 per 100,000 females (Word Health Organization, 2020). More than 60% of Palestinians with BC are diagnosed at a late stage (The United Nations Population Fund, 2020), and one in the three women with BC who are diagnosed will die after 5 years of diagnosis (Panato et al., 2018).There is a lack of systematic understanding of BC care services from the policy to the user level in the GS, making it difficult to comprehensively evaluate and put together strategic plans for cancer management (AlWaheidi, 2019). Gaza's healthcare system is fragmented, where most cancer servicesare limited and/or unavailable (Abu-Odah et al., 2020, 2022; Abu-Odah et al., 2022a,b). It has chronic shortages of pain medications and essential drugs, including chemotherapy (Palestinian Centre for Human Rights, 2020). About 40% of essential medicines in the GS were unavailable and at zero stock, compared with 20% in 2015 (Hass, 2018). The interruption and lack of medicines can last for a month or two ( Abu-Odah et al., 2022a,b). Furthermore, there are shortages in the number of beds and rooms available for the treatment and psychological support for cancer patients (Al Mezan Center for Human Rights, 2022). In addition, there are limited human resources; only 4 specialist oncologists are responsible for providing care to Gazan cancer patients (Palestinian Health Information Centre, 2020). Radiotherapy equipment are also unavailable at all in the GS (Al Mezan Center for Human Rights, 2022). Due to the unavailability of advanced diagnostic technologies, most BC women have been diagnosed in the late stages, making the patients desperate for highly advanced care management. While cancer care in Gaza hospitals has recently improved, services such as PC are still limited (Abu-Odah et al., 2020; Abu Hamad et al., 2016). The enhancementof early diagnosis and early detection of BC can be achieved by improving the accessibility of health services and the excellent utilisation of those services, in addition to improving health outcomes, increasing survival, and decreasing healthcare system challenges (Unger-Salda{\~n}a, 2014). This qualitative descriptive study aimed to explore policymakers' and patients' perspectives regarding BC management in the GS.The policymakers shared the limited and sporadic BC screening programmes in Gaza. The BC screening programmes were primarily financed by small pilot projects funded by national and international donations. Moreover, the policymakers reported a lack of policy-level initiatives to promote and pre-equip BC screening. Meanwhile, the patients expressed their unawareness of the screening tests and the purpose and benefits of early detection. Most patients had not completed the screening examinations due to cultural reasons. Women do not like to expose their breasts to healthcare professionals, including female professionals, which is considered a barrier to early detection of BC.Some policymakers highlighted that international and domestic donations primarily fund Palestine's national healthcare budget with designated health priorities (i.e., emergency), which has limited the amount of attention directed toward advancing BC treatments.The policymakers emphasised the lack of a central BC database, which is needed to help with national strategic plans and follow-up treatment and care support. At the institution level, there were not enough medical profiles, which made it hard to access data and stopped care from being consistent.The availability of reliable and accurate health information is crucial for decision-making across all health systems ( World Health Organisation, 2008a,b). The WHO works on developing health information systems in high-income countries and LMICs; however, the health information systems in most LMICs are not well-structured (World Health Organisation, 2004) to be used for decision-making, planning, and enhancing healthcare services. Additionally, the health information system in Gaza suffers from the poor link between hospitals and primary health care centres, with insufficient data centralisation, which can negatively influence BC management. The available information has been used only to present the trend in BC and not to be utilised for prediction and national strategies. It is necessary for the MOH to emphasise its leadership in upgrading and developing policies and strategies for information management by defining the responsibilities of the various directorates using recognised coordination structures, including health research centres and information technology departments, in order to improve the quality of BC data Health financing is a critical component of health care systems since it can aid in attaining universal health coverage (Kutzin, 2013; World Health Organisation, 2022a,b). Adequate financing support is essential for achieving the health care system's goals (Kutzin, 2013). Half of people worldwide cannot access health care services due to the financial burden (World Health Organization, 2017). It is known that the diagnosis of BC is almost always costly. Moreover, the BC management process has a negative financial impact on both the patient and the government. In the GS, cancer patients are offered free-of-charge treatment through their government health insurance (Portaluri et al., 2017); nevertheless, the problem is the lack of an independent budget for the BC management, while the MOH as the government centralises the related financial issues. Improving cancer services in Gaza is based only on international organisations' donations. However, financial support from national and international organisations is highly required to the continuation of BC care. In addition, the government should work with MOH to aside the money needed to develop the BC services.Gaza's BC services are fragmented and not well-organised, and they have received inadequate attention at the leadership and governance levels. The Gazan government should play its role in leadership to upgrade and develop policies and strategies for the management of the BC. Cooperation with national and international institutions for funding could help develop BC services and medication availability. Publisher Copyright: {\textcopyright} 2022 Elsevier Ltd",
year = "2022",
month = dec,
doi = "10.1016/j.ejon.2022.102223",
language = "English",
volume = "61",
journal = "European Journal of Oncology Nursing",
issn = "1462-3889",
publisher = "Churchill Livingstone",
}