Patient Related Outcome Measures (Feb 2017)
An assessment of meaning in life-threatening illness: development of the Healing Experience in All Life Stressors (HEALS)
Abstract
Danetta Hendricks Sloan,1 Karlynn BrintzenhofeSzoc,2 Tiffany Kichline,1 Karen Baker,1 Jean-Paul Pinzon,1 Christina Tafe,1 Lingsheng Li,1 M Jennifer Cheng,1 Ann Berger1 1Pain and Palliative Care, National Institutes of Health, Clinical Center, Bethesda, MD, 2School of Social Work, College of Allied Health Sciences, University of Cincinnati, Cincinnati, OH, USA Context: Patients with life-threatening or chronic illness report an experience of increased positive psychological, social, and/or spiritual change during diagnosis and/or treatment of their illness, even in the face of unfavorable prognosis. This transformation begins through the ability to make their life meaningful by forming meaningful connections that emerge through self-introspection and relationships with a divine entity, nature, and other people. The Healing Experience in All Life Stressors (HEALS) assessment provides a way to identify distress-causing changes that may interfere with the development of meaning and psycho–social–spiritual homeostasis.Objective: Preliminary examination of responses to items on the HEALS and examination of the factor structure.Method: The 48-item HEALS questionnaire was developed using a multistep process: literature review for concept development, item generation from qualitative data, and face and content validity by expert panel. In the current study, HEALS was completed by 100 patients diagnosed with life-limiting disease and seen by the palliative care team at a large research institution in the US. Exploratory factor analysis techniques were used to determine scale structure of the instrument.Results: Outcome testing of sample adequacy using Kaiser–Meyer–Olkin statistic was 0.75, which exceeds the recommended value of 0.60. The HEALS show very good internal consistency with a Cronbach’s a of 0.94. Overall results of the exploratory factor analysis established a four-factor questionnaire: 1) religion; 2) spirituality, demonstrated by a) interaction with a religious community and b) belief in higher power; 3) intrapersonal; and 4) interpersonal relationships expressed through psychological changes resulting in enhanced outlook and improvement in relationships with family and friends.Conclusion: This study involved the initial step to commence the process of scale validation, with promising outcomes identifying subscales as an effective way to assess the construct of healing. These findings support further examination using cognitive appraisal and confirmatory factor analysis. Keywords: palliative care, psycho-social spiritual assessment, validation, instrumentation