This study provides, for the first time, an understanding of the meaning and constructs of ‘feeling at peace’ and ‘feeling life is worthwhile’ in sub-Saharan African advanced disease populations. The novel, patient-centred approach demonstrates the complex nature of these concepts and the value of using mixed methods to assess the validity of measurement tools. The findings demonstrate that these POS items measure related but different aspects of spiritual well-being, and suggest that these items can be used to identify spiritual need and measure spiritual outcomes in this population, which displays high levels of spiritual distress
We found both similarities and differences in the constructs assessed by peace and life worthwhile and Spirit 8 spiritual well-being and individual items (Figure
1). Although correlation between peace and life worthwhile was only moderate (r = 0.35), the cognitive interview data highlight a degree of conceptual overlap which supports the loading of these items on an existential well-being factor in the recent factor analysis of the tool
. Both ‘feeling at peace’ and ‘feeling life is worthwhile’ were interpreted in terms of patients’ perception of life and the world and relationships to others. A recent study in Uganda found that hospice staff also had a relational understanding of patients’ spiritual well-being in terms of interconnectedness and a person’s relationship to their culture, society, neighbours and family
. The influence of social relationships on spiritual well-being reflects the collectivism of African culture and the principle of Ubuntu, which appears in many African languages and expresses the view that the essence of being human is interconnectedness and one cannot exist as a human being in isolation
. The collectivistic aspects of African culture may make stigma even more difficult to cope with than in more individualistic societies
The findings also demonstrate the divergence between the constructs of peace and life worthwhile. There was moderate correlation between the Spirit 8 spiritual well-being score and peace (r = 0.46), but little correlation between life worthwhile and spiritual well-being (r = 0.18). Constituent items of the Spirit 8 refer to spiritual, psychological and relational preparation for death and dying, reflecting the development of the original MVQOLI as a tool to assess quality of life at the end of life rather than in a chronic disease HIV population
. Peace but not life worthwhile also appears to be related to preparation for death, with peace moderately correlated with having one’s affairs in order (Spirit 8 Q1) and to comfort/unease with the thought of one’s death (Q7) (both r = 0.34, p < 0.001). This is reflected in patients’ interpretations of peace as involving forgiveness and acceptance, which are fundamental to preparation for death
, and drawing on spiritual beliefs. The concept of peace was also associated with being at peace with others in van der Geest’s study in Ghana
However, it is interesting that peace was only weakly correlated with Spirit 8 Q2 (‘I feel generally at peace and prepared to leave this life’) (r = 0.22). This highlights two important points: first, ‘feeling at peace’ is interpreted in many different ways in this population, not all of which relate directly to preparation for death; for example, peace in the ‘here and now’ rather than in some future, hoped-for state of being after death. This may be due to HIV now being a chronic rather than terminal condition, but also other factors; for example, a cultural reticence to talk about death could make agreement with the phrase ‘prepared to leave this life’ problematic. Alternatively, this conceptualisation of feeling at peace could display a North American bias; indeed, the way Spirit 8 items 1, 2 and 7 conceptually combine how the patient currently feels with preparation for death might be problematic in this population. This warrants further exploration. Second, the specified timeframe may be important when asking someone whether they feel at peace. While the POS refers to the three days prior to assessment, the Spirit 8 refers to the present, and this time difference may have affected levels of correlation. The factors that patients think about when asked whether they feel at peace now may be very different from those they think about when considering the past three days. Asking about peace during a specified period could be perceived as a less existential and more down-to-earth question than asking about peace per se. This hypothesis is supported by the qualitative finding that patients also interpreted peace in terms of every-day concerns and experiences: socioeconomic worries, pain and other symptoms, and experiences of calm and togetherness. It is also supported by the results of the factor analysis of the POS, which found that peace loaded on the physical and psychological well-being factor (0.51) only slightly less than on the existential factor (0.59)
In contrast, patients interpreted life being worthwhile in abstract terms, describing the meaning, value, purpose or quality of their lives. These interpretations support the significant moderate correlations between life worthwhile and Spirit 8 Q6 (having a better/worse sense of meaning in life compared with in the past) and Q8 (the value/burden of life) (both r = 0.34, p < 0.001). The relationship of life worthwhile to the perception of life as gift or burden is found in interpretations of life worthwhile in attitudinal terms (hope, gratitude). Patients’ appraisals of life as worthwhile were also related to identity: their ability to work, to be independent, valued by others and plan for the future, or, conversely, to feelings of helplessness or uselessness.
Steinhauser et al. explored the meaning and clinical usefulness of the question ‘Do you feel at peace?’ in patients with incurable, progressive disease in the USA. Echoing findings from this study, peace was perceived as a result of good clinical care and as a consequence of resolved conflicts with family members, within themselves, in their relationship with God, or in spiritual reflection on the meaning of illness
. Steinhauser et al. also found that items measuring peacefulness correlated highly with having a chance to say goodbye, making a positive difference in the lives of others, giving to others, sharing one’s deepest thoughts, and having a sense of meaning
. Peacefulness as measured by the QUAL-E (‘I feel at peace’) had moderate to strong correlations with the tool’s emotional, spiritual and social well-being subscales and with purpose and faith dimensions of the FACIT-Sp
. These associations were evident in our study, in which peace related to interpersonal and social factors, feeling life is worthwhile, preparation for death, and faith.
The mixed-methods study design and the large sample size are assets of the study, but there are limitations relating to translation and sampling. The MVQOLI (and hence the Spirit 8 derived from it) was originally developed in the USA and re-validated in Uganda
. Owing to resource constraints, we were unable to use the best practice methods of tool adaptation: synthesis of multiple translations, back translation, expert review and pretesting prior to psychometric testing
. However, we minimised misinterpretations by using academic departments, staff at the participating services, and independent peer review. Similarly, while one of the strengths of the study is that the cognitive interview data were collected, transcribed and translated by local researchers with cultural insight, the translated interview transcripts were not back-translated
. Instead, all translations were cross-checked by bilingual palliative care staff and difficulties in translation resolved through discussion with the local research team.
The sampling frame in the cognitive interview phase generated a maximum variation sample, while consecutive sampling was used in the quantitative phase. This resulted in a higher proportion of cancer patients in the cognitive interview sample, which also represented an equal spread of patients from rural, urban and peri-urban areas, while quantitative data were predominantly from rural areas. One reason for this is the inclusion in the quantitative data collection of an additional rural facility serving HIV patients that did not participate in the cognitive interviews. However, another facility serving HIV patients in the same province was included in the cognitive interviewing, so this perspective was not omitted. The use of consecutive rather than random sampling in the survey phase was owing to resource and population restrictions and may have a potential sampling bias. In addition, although we were able to recruit a diverse sample with respect to languages and care settings, the use of uniform self-report data collection in the survey (to minimise measurement bias introduced by using both staff and patient rating) may have introduced a sampling bias in that those with very poor health status could not participate. Finally, the sample was not sufficiently large to examine variations in responses due to cultural and linguistic differences; further research is needed in this area.
Implications for clinical practice and research
Findings demonstrate that peace and life worthwhile are distinct but related items that elicit holistic concerns and are not prescriptive (i.e. do not embody a world view biased to a particular religious outlook). As the items are also brief, easy to administer and are comprehended well by patients, it is recommended that they are used in routine assessment to focus the attention of the care team on what really matters to the patient and screen for spiritual distress. Use of the items may thus help ensure that care is patient-centred and equitable and that needs for spiritual support are not conflated with religious needs. Patients scoring poorly on either or both of the items (following the procedure adopted for depression
) could be immediately assessed in a more in-depth way and referred as necessary. A similar approach using an ‘at peace’ item to initiate discussion of holistic concerns has been suggested by Steinhauser et al.
. Using broad questions such as peace and/or life worthwhile is advantageous as clinicians can adapt their subsequent conversation and response according to the patient’s own interpretation of the question. This could also have application for countries outside of sub-Saharan Africa. Palliative care providers in sub-Saharan Africa are referred to recent recommendations regarding spiritual care and assessment
The effectiveness of using the POS items to screen for spiritual distress warrants further investigation in studies examining the cut-off scores which indicate need for spiritual support. Further research is also required to determine the acceptability to staff and patients of incorporating POS items into patient assessment and a referral pathway for responding to identified needs. The POS is currently being used in clinical practice and research studies across Africa, hence there is scope for future large-scale multicentre studies of this nature. While this study has confirmed that peace and life worthwhile measure aspects of spiritual well-being, fully establishing content validity would require research investigating the extent to which peace and life worthwhile are comprehensive, i.e. capture all aspects of spiritual well-being in this population and in different cultural and linguistic groups. Finally, the similarities regarding interpretations of peace in the USA and in South Africa and Uganda point to the possibility that peace is a cross-culturally applicable concept which may be useful in assessing and comparing patients’ holistic well-being and needs across diverse cultural contexts, and this warrants further research.