Tool to Assess Psycho-Social-Spiritual Healing: Cognitive Interviewing
| Status: | Completed |
|---|---|
| Conditions: | Hospital |
| Therapuetic Areas: | Other |
| Healthy: | No |
| Age Range: | 18 - 100 |
| Updated: | 11/11/2018 |
| Start Date: | January 20, 2016 |
| End Date: | January 5, 2017 |
Analysis of a Tool to Assess Psycho Social Spiritual Healing: Cognitive Interviewing
Background:
People undergo many changes when they have a life-threatening illness. Their values may
change. They may have less fear of illness and death. They may become more spiritual.
Researchers made a questionnaire called HEALS (Healing Experience During All Life Stressors).
They want to use it to better understand these positive changes. They hope to provide better
care for people with serious illnesses.
Objectives:
To develop the HEALS tool to better understand psycho-social-spiritual healing in people with
serious illnesses. Also, to find out how palliative care services help people handle their
illness or stress.
Eligibility:
Adults at least 18 years old at least 91 days after being diagnosed with a life-threatening
illness. They must be getting:
Inpatient or outpatient palliative care at NIH Clinical Center OR
Inpatient palliative care at Suburban Hospital OR
NIH outpatient palliative care provided at Mobile Medical Care Clinic
Design:
Participants will be screened with questions to make sure they are eligible.
Participants will have 1 individual research session. This will be at the NIH Clinical
Center.
Participants will be interviewed by a research team member. They will be asked about changes
in a person s way of living that might happen during or after a serious illness.
Participants will be asked for their thoughts and opinions about the questions. They will be
asked what ideas they may have to make the questions better.
Interviews will be audiotaped.
Participants will be asked some questions specific to their care location and team. These are
to better understand how their services are helping participants.
People undergo many changes when they have a life-threatening illness. Their values may
change. They may have less fear of illness and death. They may become more spiritual.
Researchers made a questionnaire called HEALS (Healing Experience During All Life Stressors).
They want to use it to better understand these positive changes. They hope to provide better
care for people with serious illnesses.
Objectives:
To develop the HEALS tool to better understand psycho-social-spiritual healing in people with
serious illnesses. Also, to find out how palliative care services help people handle their
illness or stress.
Eligibility:
Adults at least 18 years old at least 91 days after being diagnosed with a life-threatening
illness. They must be getting:
Inpatient or outpatient palliative care at NIH Clinical Center OR
Inpatient palliative care at Suburban Hospital OR
NIH outpatient palliative care provided at Mobile Medical Care Clinic
Design:
Participants will be screened with questions to make sure they are eligible.
Participants will have 1 individual research session. This will be at the NIH Clinical
Center.
Participants will be interviewed by a research team member. They will be asked about changes
in a person s way of living that might happen during or after a serious illness.
Participants will be asked for their thoughts and opinions about the questions. They will be
asked what ideas they may have to make the questions better.
Interviews will be audiotaped.
Participants will be asked some questions specific to their care location and team. These are
to better understand how their services are helping participants.
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.
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
We found this trial at
1
site
9000 Rockville Pike
Bethesda, Maryland 20892
Bethesda, Maryland 20892
Phone: 800-411-1222
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