Tool to Assess Psycho-Social-Spiritual Healing: Cognitive Interviewing

Background:

We identify healing in the context of chronic or life-threatening illness as a patient-reported outcome consisting of growth or benefit in psychological, social and/or spiritual dimensions representing improvement well above the patient s pre-morbidity baseline. This positive outcome often occurs despite substantial suffering during the illness, even in terminal cases. Current literature reflects numerous studies suggesting that psychological, social, and/or spiritual dimensions influence positive patient health outcomes and affects overall quality of life. This trend parallels a movement to understand how a difficult experience, such as a cancer diagnosis for example, may help facilitate positive growth, also referred to as healing. Although attention to positive growth/healing in the treatment of life limiting illness is increasing, a psychometrically sound instrument that assesses psycho-social-spiritual (PSS) growth as a means to healing does not exist. The ability to assess healing will allow improvements in programs aimed at helping individuals make positive personal changes in their health-related behavior (our larger program on healing). Content analysis of this contributes to construct validity of the assessment and brings us closer to creating a psychometrically sound measure of psycho- social spiritual healing.

This swill use cognitive interviewing to examine item performance of the NIH HEALS Assessment (healing experience during all life stressors) tool.

Objectives:

Primary Objective

• To continue with instrument development of a tool to assess an individual s progression toward psycho-social spiritual healing by evaluating the participant s understanding of questionnaire items through a cognitive interviewing technique.
• Examine differences in the understanding of questionnaire items between the three recruitment sites.

Eligibility:

• Age greater than or equal to 18 years old
• Understand and speak English
• Physician diagnosed with a life threatening illness
• 91+ days post diagnosis of life threatening illness
• Receiving inpatient or/ outpatient palliative care at NIH Clinical Center inpatient palliative Care at Suburban Hospital, and NIH outpatient palliative care provided at the Mobile Medical Care Clinic

Design:

• Exploratory descriptive study using mix-methods
• Cognitive interviews using retrospective probing in a purposive sample with three rounds of 10 for a total maximum sample of 30 participants, with the completion of content analysis after each round of 10 to inform content and clarity of question items.

• INCLUSION CRITERIA:
• Adults age greater than or equal to 18 years. The instrument under study for validation in this protocol is a self-assessment specifically designed for adult populations. Adults above the age of 18 are able to use logic, deductive reasoning, think more about the world / environment and has an understanding and ability to apply abstract ideas, which are all necessary for retrospective cognitive processes
• Understand and speak English
• Oriented to person, time and place at time of interview
• Physician diagnosed with life threatening illness
• 91+ days post diagnosis of life threatening illness
• Receiving inpatient or outpatient palliative care at NIH Clinical Center, inpatient palliative Care at Suburban Hospital, and NIH outpatient palliative care provided at the Mobile Medical Care Clinic

Exclusion criteria

• Patients with known brain metastases will be excluded because of their poor prognosis and because they often develop progressive neurologic dysfunction that would confound the evaluation of the assessment questions
• Inability to provide informed consent
• Inability to meet inclusion criteria