Phenomenological Study of Psycho-Socio-Spiritual Healing in the Context of Chronic or Life-Threatening Illness

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 (Kearney 2000).

In previous phenomenological studies, qualitative descriptions of healing and the processes
by which it develops have not been structured in categories suitable for the development of a
fully validated and standardized psychometric instrument. Also, the relationship of healing
to psychometrically measurable constructs such as posttraumatic growth, resilience, coping,
and acceptance is not clear.

Objective: This program is to provide (1) a qualitative model of healing-related processes,
(2) phenomenological categories of healing suitable for a psychometric instrument
development, (3) the relationship of healing to other relevant constructs such as trauma,
coping, and adult development, and (4) questionnaire items for healing assessment and (5)
software tools that greatly increase the qualitative analysis speed and rigor of
phenomenological category building.

Study populations: Two populations of subjects who have experienced a life-threatening
disease or serious chronic illness (cancer or cardiac disease) will be recruited from three
sites. The first population (50 subjects) are individuals with exemplary healing experiences
(life-transforming positive outcomes connected to illness along psychological, social and/or
spiritual dimensions) or in the early stages of healing-related processes. In-depth interview
data from these subjects will empirically help identify endpoint markers and process pathways
of profound healing. The second population (400 subjects) consists of current or past
participants in structured healing or medical rehabilitation programs. In a written
interview, these participants will qualitatively evaluate questionnaire items for identifying
readiness for and progress toward healing using their first-hand, illness-related experience.

Design: This protocol has a qualitative, phenomenological, natural history design similar to
identifying features of a medical syndrome or psychological disorder. It has two formats of
data collection: in-depth individual interviews of the exemplary healing population, and
self-administered written interviews for current participants in formal healing or
rehabilitation programs. In-depth interview sessions have 2 1/4-hour duration with three
components: a 50-minute, in depth phenomenological interview, a 30-minute short-statement
interview (how subjects view healing-related short questionnaire statements), and a 25-minute
related-constructs interview (how their positive outcomes, may be related to personality).
Interview and short-statement analyses consist of standard qualitative methodologies
including transcription, memo-writing, coding, categorization, and modeling.

Outcome measures: None (non-interventional)

- INCLUSION CRITERIA FOR ALL SUBGROUPS IN STUDY POPULATION 1:

1. Physician-diagnosed cancer or cardiac disease.

2. Audio clarity subjects must be able to participate in oral interviews with
sufficient speaking volume and clarity to enable clearly audible recording of the
participant s verbal responses using a recorder. For example, subjects with
severe hearing disability who nonetheless reads lip well are eligible for
enrollment in this study.

3. Willing to have audio recording during interview subjects must be willing to have
the interview recorded with a recorder during oral interviews.

4. English speaking and reading subjects must be proficient in English speaking and
reading. The purpose of the speaking requirement is to aid interview
transcription and coding processes. The purpose of the reading requirement is
two-fold: (A) for completion of English text documents during enrollment,
including written standard psychological exams, with minimal assistance, and (B)
fluent reading of specific written text in English is necessary for the training
of transcription software to perform automated transcription.

5. Able to provide informed consent.

SUBGROUP-SPECIFIC INCLUSION CRITERIA IN STUDY POPULATION 1:

1. SFC participants who have completed healing program: have well-established,
life-transforming positive psychosocio-spiritual outcome with onset > 6 months before
interview

2. SFC-CUP participants who may be considered underserved in healthcare: have
well-established, life-transforming positive psychosocio-spiritual outcome with onset
> 6 months before interview

3. CRS patients recent cardiac event, beginning rehabilitation: have willingness to
participate in a series of face-to-face or telephone interviews

4. CRS patients completed initial 36-session physical rehabilitation: have positive
psycho-socio-spiritual outcome with onset after cardiac event

5. NIH CC PPCS patients terminal prognosis or GVHD: positive psycho-socio-spiritual
outcome with onset after disease onset or diagnosis

INCLUSION CRITERIA FOR POPULATION 2:

1. Physician-diagnosed cancer.

2. Completion of at least one of the formal programs of palliative care (CC), healing
(SFC), or rehabilitation (CRS or CC).

3. No requirement for positive psychological, social, or spiritual change of any
duration.

4. English speaking and reading subjects must be proficient in English speaking and
reading. The purpose of the speaking requirement is to aid interview transcription and
coding processes. The purpose of the reading requirement is two-fold: (A) for
completion of English text documents during enrollment, including written standard
psychological exams, with minimal assistance, and (B) fluent reading of specific
written text in English is necessary for the training of transcription software to
perform automated transcription.

5. Able to provide informed consent.

SUBGROUP-SPECIFIC INCLUSION CRITERIA IN STUDY POPULATION 1:

1. SFC participants who have completed healing program: have well-established,
life-transforming positive psychosocio-spiritual outcome with onset > 6 months before
interview

2. SFC-CUP participants who may be considered underserved in healthcare: have
well-established, life-transforming positive psychosocio-spiritual outcome with onset
> 6 months before interview

3. CRS patients recent cardiac event, beginning rehabilitation: have willingness to
participate in a series of face-to-face or telephone interviews

4. CRS patients completed initial 36-session physical rehabilitation: have positive
psycho-socio-spiritual outcome with onset after cardiac event

5. NIH CC PPCS patients terminal prognosis or GVHD: positive psycho-socio-spiritual
outcome with onset after disease onset or diagnosis

EXCLUSION CRITERIA FOR THE STUDY POPULATION 1:

1. Age under 18 years. Subjects under 18 years of age are less likely to have a
sufficient volume of life experience and maturity of perspective to address the full
range and depth of psychological, social and spiritual issues that arise in the
context of psycho-socio-spiritual healing.

2. Born with the illness or diagnosed before 17 1/2 years of age. Even if the subject is
at least 18 years of age at the time of the interview, the scope of this study is
focused on the adult psycho-socio-spiritual response to cancer (see exclusion
criterion 1 above).

3. Emotional distress self-report (by the subject) that is equal to or above 3 as
indicated on the Distress Thermometer instrument s 0-10 scale.

EXCLUSION CRITERIA FOR POPULATION 2:

1. Age under 18 years. Subjects under 18 years of age are less likely to have a
sufficient volume of life experience and maturity of perspective to address the full
range and depth of psychological, social and spiritual issues that arise in the
context of psycho-socio-spiritual healing.

2. Born with the illness or diagnosed before 17 1/2 years of age. Even if the subject is
at least 18 years of age at the time of the interview, the scope of this study is
focused on the adult psycho-socio-spiritual response to cancer (see exclusion
criterion 1 above).