An investigation of a sense of spiritual well-being in specialist palliative care

Background: The role of palliative care at the end of life is to relieve suffering of patients and their families through comprehensive assessment and treatment of physical, psychosocial and spiritual symptoms that patients experience. Specialist Palliative Care (SPC) provides individual, holistic care through an inter-disciplinary approach and ultimately aims to enhance quality of life and overall well-being for individuals and their families. Empirical research in specialist palliative care is limited but beginning to grow and it is recognized as vital for the development of the specialty. Moreover, empirical studies related to the spiritual components of care in those with a life limiting illness are few. Spiritual well-being is an essential inner human resource that is vital, following the diagnosis of a life limiting illness. Despite the inherent significance of the concept, the individualistic ‘sense of spiritual well-being’ in this population is substantially under researched. There has been no study to date that has empirically investigated a sense of spiritual well-being comprising of personal faith, spiritual contentment and religious practice using a conceptual framework. Aim: To investigate a sense of spiritual well-being in people receiving SPC guided by a neo-theoretical framework. Methods: The research approach used was quantitative, employing a descriptive and correlational design. Derived from the mid-range Theory of Spiritual Well-being in Illness, an adapted neo-theoretical framework subsequently guided the study design. The dependent variable was a sense of spiritual well-being (comprised of three domains of personal faith, spiritual contentment and religious practice). The independent variables included impact of illness (composed of emotional, physical and functional well-being), social well-being, stressful life events and a mediating variable of seeking meaning. Data collection: Data was collected using the adoption of a multi-section, multi-item questionnaire. Tools employed were the Functional Assessment in Chronic Therapy General (FACT-G) (measuring the impact of illness and social well-being), the Spiritual Assessment Scale (SAS) (measuring a sense of spiritual well-being and its 3 domains of personal faith, religious practice and spiritual contentment) and the Meaning in Life Questionnaire (MLQ) measuring presence of meaning and seeking meaning. A selection of demographic items were also included; age, gender, diagnosis, length of time since diagnosis, place of care, religion plus stressful life events. Data collection took place over a period of 4 months. Sample: A convenience sample, derived from a specialist palliative care service was recruited (n=59). The sample was selected following screening for suitability to partake, using a carefully designed screening tool that enabled the operationalization of ethically appropriate data collection. Results: The population of patients receiving SPC were either community based (62.1%) or from an inpatient hospice (37.9%). Those included in the study (n=58) were made up of 41.4% male respondents and 58.6 % female with a mean age 70.5 (range 35 to 92 years old). The predominant diagnosis of participants was cancer (87.9%) and the length of time since diagnosis varied from 2 to 144 months. Descriptive data indicated that a sense of spiritual well-being was relatively high in this population (Md =86 on scale 21 to 105). The domains of a sense of spiritual well-being were measured on scales from 7 to 35. Personal faith median score was 28.5, religious practice median score was 28.5 and spiritual contentment median score was 30; indicating each to be relatively positive. Factors influencing an overall sense of spiritual well-being included age (p=0.022), length of time since diagnosis (p=0.050), social well-being (p=0.043) and emotional well-being (p=0.002). Various statistical relationships were identified within the three domains. Emotional well-being correlated with all three domains of personal faith, spiritual contentment and religious practice. Results indicated that factors influencing spiritual contentment were age (p=0.036), functional well-being (p=0.010), emotional well-being (p=0.020) social well-being (p=0.010). Multivariate analysis subsequently identified relationships with social well-being (p=0.035) and functional well-being (p=0.031) and a total sense of spiritual well-being. Conclusion: This study uniquely contributes to new empirical research in a population that are inherently difficult to access and for whom a holistic approach to care is essential. A greater understanding of the multi-dimensional concept of a sense of spiritual well-being in a SPC population has been achieved. Specifically, this study demonstrated a relationship between social well-being and a sense of spiritual well-being, which is most useful to practice. In SPC, extending care to the family is an inherent element of the underpinning philosophy and this study supports how essential this component of care is. For example, we now know that those who have indications of lower social well-being may be at risk of a lower sense of spiritual well-being and therefore more distress. The implications of this study for practice are far reaching. This study supports the potential for supporting new therapeutic interventions and assisting the evolution of existing ones. The correlation between functional well-being, social well-being, emotional well-being and spiritual contentment is critical, particularly in relation to the growth in focus on clinical outcome measures in palliative care practice and potentially enabling the identification of sources of spiritual distress. Finally, the development of the neo-theoretical framework has not only validated a number of the key relationships between factors relating to impact of illness on a sense of spiritual well-being, but also has potential to underpin SPC practice and research interventions. Moreover, the three domains of a sense of spiritual well-being in the neo-theoretical framework were highly correlated. Thus, these findings have supported the definition that a sense of spiritual well-being is composed of personal faith, religious practice and spiritual contentment