By Dr Eve Namisango
Evidence and empirical observation by palliative care providers have demonstrated that there are seriously ill or terminal patients who progress beyond the experiences of psychological trauma, coping, and acceptance. This triggered an inquiry into the construct of healing in the African context.
The NIH Healing Experience of All Life Stressors (NIH-HEALS)
Designed as a self-report 35-item questionnaire, Healing Experience of All Life Stressors (NIH-HEALS) was developed by the NIH Clinical Center Pain and Palliative Care Service as a psycho-social-spiritual measure of healing from trauma.
NIH-HEALS was developed following observation that some patients with life-threatening and/or severe chronic illness report positive psychological, social, and spiritual change during the diagnosis or treatment of their illness, even in the face of unfavorable prognosis.
For effective use in different cultural settings, it is important to assess for cross-cultural equivalence of the construct, and the items, as well as its comprehensibility and relevance in the different cultures. This is defined as face and content validity. Using a mixed methods approach, we recruited 32 palliative cancer patients into the study and used the Think aloud and probing technique alongside the standard piloting to assess its face and content validity and to establish its appropriateness and feasibility for use in palliative care settings in Uganda.
It was a great experience interviewing patients with advanced cancer to explore how the constructs of 1) connection, 2) reflection and inspection, 3) trust and acceptance shape the psychosocial and spiritual journeys to healing even when the disease is incurable. We explored the factors associated with psychosocial and spiritual trauma in patients living with advanced cancer. We observed that such factors include being unprepared for the occurrence, lack of previous exposure to trauma, low coping and resilience capability and pre-existing trauma. Based on the findings from routine piloting, the patients endorsed relevance of the NIH- HEALS proposed items, with a suggestion to improve the wording of five of the thirty-five items for better comprehension.
Our study thus demonstrates that the NIH-HEALS tool has good feasibility properties for use in palliative care and robust face and content validity properties and we look forward to integrating it into care to improve the psychosocial and spiritual care and is potentially useful in trauma therapy. On the side of the study participants, this was a rewarding experience it was an opportunity to talk about trauma, psychosocial and spiritual healing, a component that is commonly given less attention during clinical care, despite it being integral to the full health and wellbeing construct.
We also unveil novel strategies for engaging palliative patients in research and in public engagement activities for a shared role in the interpretation of the study findings. To effectively engage patients in this research, we were open to recruiting them from the outpatient and community/home settings. This allows the frail and weak patients who cannot travel to the health facilities to participate in research which shapes their care. Besides bridging the proximity to service centres, we are able to conduct interviews in their preferred environments. Notably, allowing for breaks between interviews was a useful strategy for enhancing their ability to complete the interviews.
In addition, the patient public engagement activity involved getting the study participants into small groups of about ten people and these were stratified by gender. The sessions kicked off with a sensitization session about the activity and role of group participants. This was followed by a presentation summarizing the background and aims of the study and then the key preliminary findings. Then patients were invited to comment on the relevance of the measure, in terms of validity i.e. are they a good representation of their views about the relevance, appropriateness, and comprehensiveness of the measure and its associated items. It was also an opportunity to probe more about what constructs like spiritual healing meant to them. We used these narratives to corroborate the findings from the earlier study on the key domains that shape the psychosocial and spiritual healing construct.
We further discussed the meaning of the construct healing to them to confirm the validity of themes identified via the narrative collected during the pilot. The patients also participated in the mapping of these themes on to the three pre-defined factors of the NIH-HEALS. We concluded by setting recommendations going forward and they emphasized a need for a user’s guide to provide some details about the meaning intent for each of the items and to provide some local examples for the five items they found difficult to understand but again felt were critical. The African drum was one of our working tools, during meeting breaks, we sung some folk songs and played the local instruments. Of course, a light well prepared African meal was inclusive, in line with the African tradition and the ethos of palliative care.
The patient public engagement was viewed as a tool for empowering patients to use their voices in shaping the care that they receive.
“Thank you for this initiative, I think as patients we have long been forgotten, such platforms set ground for meaningful partnership between patients, researchers, and care providers. I think our voices have been heard fairly in this activity.” - Female participant
As an epidemiologist, who has spent over ten years conducting medical anthropology research, this was a very exciting experience to twin the best practices from the two fields. I realized that asking about psychosocial and spiritual healing can open doors for discussing advance care planning (ACP)which is often a difficult conversation in palliative care. ACP is defined as “the process of planning for future health and personal care. It includes discussing one’s personal beliefs and goals for care with their loved ones and healthcare providers. ” Patients who have healed are more willing to accept things they cannot change, and this can be a good test for whether to initiative this conversation or focus on doing more counseling to prepare the patients. I also learnt that it is indeed possible to engage patients in research that informs their care, the data analysis, and generation of implications for care, irrespective of their functional status and disease stage. We just need to use the appropriate research methods. The study participants also expressed gratitude for being invited to learn about the study findings and to participate in the interpretation and developing of recommendations. This is a promising approach to empowering patients to use their voices to have a say in the care they receive.
These views in this blog post are my own and do not necessarily represent the views of the NIH
The project was funded by the NIH Clinical Centre and is led by Dr Ann M Berger