|Abu-Odah, Hammoda M. M.
|An exploration of the factors and needs associated with the development of a palliative care programme into the Palestinian healthcare system from different key stakeholders’ perceptions
|Molassiotis, Alex (SN)
Liu, Justina (SN)
|FHSS Faculty Distinguished Thesis Award (2021/22)
|Palliative treatment -- Palestine
Medical care -- Palestine
Hong Kong Polytechnic University -- Dissertations
|School of Nursing
|xxiii, 396 pages : color illustrations
Due to a transitional demographic change in population growth globally and an increase in life expectancy, the need for palliative care (PC) has increased, and this approach is urgently required for adoption and integration into healthcare systems (HCSs). The integration of PC services into mainstream HCSs and national policies has been identified as a core foundation for PC development. Despite the significant benefits of PC and the successful introduction of PC services in many countries worldwide, there is so much more to be done in low- and middle-income countries (LMICs), where these services are still largely inaccessible or unavailable. There are no PC services provided in Palestine - a country that experiences a significant increase in cancer diagnosis, population density, economic and financial shortages, drug shortages, and fragmented HCS. The unavailability of PC services in most LMICs, including Palestine, seems incongruous and unacceptable, given the importance of PC services. The unavailability of PC services is attributed to multiple challenges that continue to create obstacles to their availability and development. Considering that other countries have successfully developed PC for their HCS, there are lessons to be learned from them on how to integrate PC services into an existing HCS. Palestine may follow the innovations pioneered in other countries that have successfully integrated PC into their HCS. No research studies have been done focusing on the development of PC. It is apparent that high-level documents from governments or large organisations focus on the implementation and evaluation of PC strategies and models.
Aim and objectives
The objective of this doctoral research thesis is to explore the factors and needs associated with the development of a PC programme in the Palestinian HCS from different key stakeholders' perceptions. Based on the WHO Public Health PC Model and the socioecological, this doctoral thesis is accomplished through three separate specific studies. Study One aimed to identify the unmet service needs of patients with advanced cancer, with the following five objectives: 1) to determine the prevalence of unmet supportive care needs of patients with advanced cancer; 2) to determine the level of emotional/psychological distress, pain, and other symptoms of patients with advanced cancer; 3) to assess the quality of life (QOL) and spiritual well-being of patients with advanced cancer; 4) to assess the sociodemographic and clinical variables that influence unmet needs; and 5) to examine the association between unmet needs and pain, symptoms, QOL, and the spiritual well-being of patients with advanced cancer.
Study Two aimed to assess PC knowledge, attitude, educational needs and HCS-related issues from the perspective of physicians and nurses, with the following six objectives: 1) to assess the physicians' and nurses' knowledge of PC; 2) to explore physicians' and nurses' attitudes about end-of-life-care and care of the dying; 3) to assess the needs for PC educational programmes from the perspective of physicians and nurses; 4) to ascertain how far PC services are available in hospitals from physicians' and nurses' perspectives; 5) to identify the key barriers to the provision of PC into the HCS from the perspective of physicians and nurses, and 6) to determine the factors that influence their knowledge and attitudes toward PC and care of the dying.
Study Three aimed to explore the perspectives of decision- and policy-makers on the provision of PC services, with the following five objectives: 1) to understand the extent to which PC has been identified as a priority from policymakers' perspectives; 2) to discuss with policymakers existing and new policies (strategies, plans, resources) that support the integration of PC into the structure of national HCSs; 3) to explore policymakers' perspectives about policies/work being done regarding strengthening human resources, such as training and education; 4) to identify which essential medicines for pain and symptom management are available in the HCS, their cost, and prescribing related-issues from policymakers' point of view; and 5) to identify the challenges and facilitators to the provision of PC from policymakers' perspective. The findings of these three studies will serve as a point for a discussion on how to move forward in the provision of a PC programme into the HCS of LMICs (Palestine).
A multi-method research design was employed in this doctoral research study to fulfil the overall study aim through three specific studies. The first two studies adopted a quantitative approach (survey), while the third study adopted a qualitative approach (interviews). In Study One, a hospital-based cross-sectional quantitative design was applied on a convenience sample of 379 patients aged 18 or above who had been diagnosed with advanced-stage cancer. Participants were recruited from two hospitals in the Gaza Strip (Al- Shifa Hospital and the European Gaza Hospital), which provide cancer care services to adult patients. A modified Supportive Care Framework for Cancer Care (SCNF) was adopted to guide the study's design and the selection of the outcome variables. The unmet needs of patients were assessed using the Arabic version of the short form of the Supportive Care Needs Survey (SCNS-SF34). Other instruments were utilised to examine their distress [The Arabic version of the Distress Thermometer (DT)], anxiety and depression [The Arabic version of the Hospital Anxiety and Depression Scale (HADS)], physical symptoms [The Arabic Questionnaire for Symptom Assessment (AQSA)], QOL [The Arabic version of the Functional Assessment of Cancer Therapy (FACT-G)], and spirituality [The Arabic version of the Functional Assessment of Chronic Illness Therapy—Spiritual Well- Being Scale (FACIT-Sp)].
In Study Two, a cross-sectional quantitative study design was also applied on a convenience sample of 169 professionals working in medical and oncology departments at one of the abovementioned two hospitals, where cancer patients are more likely to be treated, and follow-up care is provided. The Palliative Care Knowledge Test (PCKT), Bradley attitude questionnaire of end-of-life care, Frommelt Attitudes Towards Care of the Dying (FATCOD Form B), and PC Needs Assessment instrument were utilised for data collection. The WHO steps (forward translation, expert panel Back-translation, pre-testing, and final version) were adopted to translate and adapt all study instruments into Arabic-the mother tongue of study participants. Overall, all instruments' item-level content validity index and scale-level content validity index showed a high content validity. The Cronbach's α coefficient for all instruments was also acceptable.
In Study Three, a descriptive, exploratory qualitative design was employed on a purposive sample of 12 decision and policymakers. Participants were identified as having a policy-making role in the HCS and were responsible for making executive and legislative decisions about matters related to services (including PC). These policymakers had prior experience, either clinical and/or managerial positions in health services developments. Face-to-face, semi-structured interviews were employed to collect the data.
The Statistical Package for the Social Science (SPSS) software version 25 was used to enter and analyse data of the first two studies. Missing data were replaced with multiple imputations. Descriptive statistics were utilized to summarise the personal characteristics of the participants as well as all instruments and their domains. A generalised linear regression analysis was employed to test the relationship between the variables. All statistical tests were two-tailed, and p values of less than 0.05 were treated as significant. A qualitative content analysis approach was adopted for analysis of the interview data of Study Three.
Of the 379 advanced cancer patients recruited in Study One, 96.8% stated they had at least one 'moderate to high' level of unmet service needs. The most frequent unmet needs were those in the physical aspects of daily living (Mean 58.94; SD ± 20.93) and psychological (Mean 58.84; SD ± 19.49) domains. Most of the patients (91%) were physically ill and reported experiencing physical symptoms. About 86.3% had a high level of distress. Almost 90% reported signs of depression and anxiety. Although they felt that their spiritual well-being was good, their QOL was poor. Regression analyses identified that educational level, age, gender, marital status, cancer stage, cancer type, physical symptoms, depression, anxiety, distress, QOL, and spirituality were independently associated with unmet service needs.
A total of 169 healthcare professionals (137 nurses and 32 physicians) participated in Study Two. Professionals had insufficient knowledge of PC (Mean 42.8; SD±11.02), but had positive attitudes towards end-of-life-care (Mean 3.32; SD±0.38). Nurses had significantly higher scores on attitudes towards the care of dying than physicians (t= - 4.980, p <0.001). A total of 75.1% of professionals would like to learn more about PC. Patients'/families' avoidance of discussing issues around dying and a lack of training for staff related to PC were the two significant barriers in providing PC. Educational level and previous training were found to be associated significantly with knowledge and attitudes towards PC.
For Study Three, 12 decision and policymakers participated in the semi-structured interviews. The participants' ages ranged from 35 to 57 years. Most had more than 20 years of experience at the Ministry of Health. Four primary categories were identified from the interviews: 1) nature of current PC healthcare services; 2) potential benefits of PC; 3) challenges to PC provision; and 4) considerations for PC integration into the HCS. Each category had two or more subcategories. The current PC healthcare services provided to Palestinian patients with life-threatening illnesses and their families are not comprehensive and limited to symptomatic management. There is a Palestinian national strategic plan for developing PC; however, the goals of development are not clearly defined in the plan, and capabilities to implement the plan are inadequate. Education and training-related challenges were frequent challenges in the GS, followed by funding allocation and medication availability.
Palestinian advanced cancer patients exhibited a significantly high prevalence of unmet needs. Increasing unmet needs have contributed negatively to patients' physical and psychological well-being, and QOL. The high prevalence supports the argument that there is a need to develop a PC programme within the HCS, which would likely help enhance the care provided in the future. High unmet supportive care needs are attributed to insufficient PC knowledge and training of HCPs. Integration of formal and informal education on PC within care services and health curricula is a priority. Educational and training programmes should be comprehensive, covering PC's basic and advanced principles. The findings also help policymakers to build and implement the PC programme in the Palestinian HCS. Although PC is clearly stated in the Palestinian national strategic plan, the goals of development are not clearly defined in the plan, and capabilities to implement the plan are inadequate. Developing policies and plan to align with national laws could help enhance health services for patients and their families and resolve several challenges. Integration of PC into Palestinian universities' educational curricula as an obligatory course and establishing advanced degree programmes in PC to overcome the shortage of PC specialists is required. The Palestinian government should collaborate with national and international partners to overcome the challenges of PC provision and implement PC into the Palestinian HCS.
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