Psychosocial Factors of Burn Related Injuries and Perceived Gaps in Service Delivery

Background:

Survivors of burn injury can experience a broad spectrum of physical and psychological
outcomes depending on the burn severity (Esselman, 2007; Fauerbach et al., 2007). Strides in
research have been made to further our understanding of burn related injuries, however, there
are gaps in the literature concerning the areas of prevention, intervention, and improving
outcomes for psychosocial adjustment post-burn, and a fractious and varied approach to the
measurement of psychosocial adjustment (Attoe & Pounds-Cornish, 2015). Two major research
areas have been identified as priority areas in burn research: further understanding
psychosocial factors associated with burn related injuries and intervention related research
(Fauerbach, Pruzindky, & Saxe, 2007; Attoe & Pounds-Cornish, 2015). Attoe & Pounds-Cornish
(2015) identified the following constructs as warranting further study: depression anxiety
disorders, phobias, substance abuse, sexuality, body image, peer support, post-traumatic
growth, social support, active coping, sleep problems, bullying. Fauerbach, Pruzindky, & Saxe
(2007) added that the role of length of hospital stay, personality, burn characteristics, and
time since burn on return to work, work changes, and work satisfaction are also important
factors to study.

There is, without question, an important bridge to be built between our emerging
understanding of the psychosocial needs among burn survivors and the offering of hope through
intervention (Fauerbach, Pruzindky, & Saxe, 2007). The first step to ensure that
interventions are effective is to identify and assess which services and interventions are
available, utilization of these services, patient satisfactions of services, measured
outcomes, degree of compliance, facilitators and barriers to psychosocial interventions,
impact of psychological and psychological stressors on outcomes, and gaps in services. Having
a greater understanding of the psychosocial factors and needs among burn survivors has the
potential to impact how services are developed, implemented, and utilized.

Research Objectives and Purpose:

The two research questions guiding this study are:

1. What are the psychological factors impacting burn related injury survivors?

2. What is the relationship between psychosocial factors for burn related injury survivors,
discharge readiness, and service utilization?

This proposed study aims to:

1. Assess psychosocial symptoms, behaviors, and adjustment post-burn in adolescents,
adults, and family members; and

2. Conduct a needs assessment related to post-burn services utilization, perception of
service quality and service need, and facilitators and barriers to service delivery and
utilization.

Research Methods:

Study design:

This study will utilize a mixed methods design featuring quantitative assessment of symptoms
in conjunction with collection of in-depth qualitative data. A convergent parallel mixed
methods design will be used, in which qualitative and quantitative data will be collected in
parallel, analyzed separately, and then merged. In this study, perceived stress, mental
health symptoms and behaviors and other variables will be used to test how they will
influence the daily functioning and service utilization for adolescent an adult burn related
injury patients. The data gathered in the interviews will explore these constructs in-depth
for the participants.

Patients who are hospitalized due to a burn related injury who require skin grafts will be
eligible to participate in this study. After it is determined by hospital staff that they are
medically stabilized, hospital staff will give information to the patient about the study.
This determination will be made with the clinical team (nurses, doctors, PAs, mental health
professionals) and final determination will come from the clinical supervisor. If they agree
to the initial pre-screening meeting, the PI will give detailed information about the study
and will go through the consent procedure. Participation in this study is completely
voluntary. Participation does not give patients any incentive related to care or services
available.

Participation in the study will involve patients participating in comprehensive assessments
during hospital stay, during discharge planning, and three times post-hospitalization. The
goal is that 300 individuals participate in the comprehensive assessments over a two year
period. Power analysis for cross-sectional data was conducted in Open Source Epidemiologic
Statistics for Public Health to determine a sufficient sample size using an alpha of 0.05, a
power of 0.80, a medium effect size (ρ = 0.30), and one tail (Faul et al., 2008). Based on
the aforementioned assumptions, the desired sample size is 95 (utilizing data related to PTSD
with a conservative 22% rate with outcome). A sample size of 300 will give sufficient power
for analysis of factors that may have lower prevalence.

Data Collection for quantitative data:

1. Once enrolled in the study, the PI will collect the initial baseline assessment data
from study participants during meetings. Sociodemographic data will include items such
as age (at time of first assessment, while participant is still in the hospital), race
and ethnicity, household income, perceived financial stability, marital status, and work
and school related information. The baseline assessment includes discharge questions
asked during the discharge process. The assessment instrument includes the following
measures/assessment questions. The surveys will be completed interview style, with the
PI marking answers to the questions. Data will be entered into Qualtrics, a secure
online survey program.

1. Relevant demographic information

2. CFPB Financial Well-Being Scale Questionnaire

3. Psychosocial Assessment

4. Sleep - Wake Questionnaire (University of South Carolina)

5. Perceived Stress Scale: This 10-item scale measures the perception of stress
(Cohen, Kamarck, & Mermelstein, 1983).

6. Burn's Depression Checklist

7. Burn's Anxiety Inventory

8. Rosenberg Self-Esteem Scale: A 10-item scale that measures global self-worth by
measuring both positive and negative feelings about the self (Rosenberg, 1965).

9. WHO Disability Assessment Schedule 2.0

10. Satisfaction with Appearance Scale

11. Sexual Distress Scale

12. Adverse Childhood Experience Questionnaire

13. PTSD Checklist for DSM-5 with Life Events Checklist: This 20-item self-report
measure assesses the twenty DSM-5 symptoms of Post Traumatic Stress Disorder
(Weathers, Litz, Keane, Palmieri, Marx, & Schnurr, 2013).

14. Dissociative Subtype of PTSD Scale (DSPS): The DSPS is a 15-item measure that
assesses lifetime and past-month (current) dissociative symptoms, including
symptoms that define the DSM-5 definition of the dissociative subtype of PTSD
(Wolf, Mitchell, Sadeh, Hein, Fuhrman, Pietrzak, & Miller, in press).

15. Center for Epidemiological Studies Depression Scale for Children (CES-DC)
(Faulstich, Carey, Ruggiero et al., 1986)

16. Screen for Child Anxiety Related Disorders (SCARED) (Birmaher, Brent, Chiappetta,
Bridge, Monga, & Baugher, 1999)

17. UCLA PTSD Index for DSM (Adolescent version)

18. Adolescent Dissociative Experiences Scale-II (A-DES) (Armstrong, Putnam, Carlson,
Libero, & Smith, 1997)

19. Discharge questions

First meeting: during hospitalization and during discharge planning Demographic
information (Adults, Adolescents, Parents) CFPB Financial Well-Being Scale
Questionnaire (Adults, Parents) Psychosocial assessment (Adults, Adolescents,
Parents) Sleep - Wake Questionnaire (Adults, Adolescents) Perceived Stress Scale
(Adults, Adolescents) Burn's Depression Checklist (Adults) Burn's Anxiety Inventory
(Adults) Rosenberg Self-Esteem Scale (Adults, Adolescents) WHO Disability
Assessment Schedule 2.0 (Adults, Adolescents) Satisfaction with Appearance Scale
(Adults, Adolescents) Sexual Distress Scale (Adults) Adverse Childhood Experience
Questionnaire (Adults) PTSD Checklist for DSM-5 with Life Events Checklist (Adults)
Dissociative Subtype of PTSD Scale (Adults) Center for Epidemiological Studies
Depression Scale for Children (Adolescents) Screen for Child Anxiety Related
Disorders (Adolescents) UCLA PTSD Index for DSM (Adolescent version) (Adolescents)
Adolescent Dissociative Experiences Scale-II (Adolescents) Discharge questions
(Adults, Adolescents, Parents) Second meeting: approximately 1 month post-discharge
CFPB Financial Well-Being Scale Questionnaire (Adults, Parents) Psychosocial
assessment (Adults, Adolescents, Parents) Sleep - Wake Questionnaire (Adults,
Adolescents) Perceived Stress Scale (Adults, Adolescents) Burn's Depression
Checklist (Adults) Burn's Anxiety Inventory (Adults) Rosenberg Self-Esteem Scale
(Adults, Adolescents) WHO Disability Assessment Schedule 2.0 (Adults, Adolescents)
Satisfaction with Appearance Scale (Adults, Adolescents) Sexual Distress Scale
(Adults) PTSD Checklist for DSM-5 with Life Events Checklist (Adults) Dissociative
Subtype of PTSD Scale (Adults) Center for Epidemiological Studies Depression Scale
for Children (Adolescents) Screen for Child Anxiety Related Disorders (Adolescents)
UCLA PTSD Index for DSM (Adolescent version) (Adolescents) Adolescent Dissociative
Experiences Scale-II (Adolescents) Third meeting: approximately 6 months
post-discharge CFPB Financial Well-Being Scale Questionnaire (Adults, Parents)
Psychosocial assessment (Adults, Adolescents, Parents) Sleep - Wake Questionnaire
(Adults, Adolescents) Perceived Stress Scale (Adults, Adolescents) Burn's
Depression Checklist (Adults) Burn's Anxiety Inventory (Adults) Rosenberg
Self-Esteem Scale (Adults, Adolescents) WHO Disability Assessment Schedule 2.0
(Adults, Adolescents) Satisfaction with Appearance Scale (Adults, Adolescents)
Sexual Distress Scale (Adults) PTSD Checklist for DSM-5 with Life Events Checklist
(Adults) Dissociative Subtype of PTSD Scale (Adults) Center for Epidemiological
Studies Depression Scale for Children (Adolescents) Screen for Child Anxiety
Related Disorders (Adolescents) UCLA PTSD Index for DSM (Adolescent version)
(Adolescents) Adolescent Dissociative Experiences Scale-II (Adolescents) Fourth
meeting: approximately 1 year post-discharge CFPB Financial Well-Being Scale
Questionnaire (Adults, Parents) Psychosocial assessment (Adults, Adolescents,
Parents) Sleep - Wake Questionnaire (Adults, Adolescents) Perceived Stress Scale
(Adults, Adolescents) Burn's Depression Checklist (Adults) Burn's Anxiety Inventory
(Adults) Rosenberg Self-Esteem Scale (Adults, Adolescents) WHO Disability
Assessment Schedule 2.0 (Adults, Adolescents) Satisfaction with Appearance Scale
(Adults, Adolescents) Sexual Distress Scale (Adults) PTSD Checklist for DSM-5 with
Life Events Checklist (Adults) Dissociative Subtype of PTSD Scale (Adults) Center
for Epidemiological Studies Depression Scale for Children (Adolescents) Screen for
Child Anxiety Related Disorders (Adolescents) UCLA PTSD Index for DSM (Adolescent
version) (Adolescents) Adolescent Dissociative Experiences Scale-II (Adolescents)

2. One month post-discharge, the PI will again collect the assessment data.

3. Six months post-discharge, the PI will again collect the assessment data.

4. One year post-discharge, the PI will collect that last assessment data.

Data Collection for qualitative data:

The investigators will utilize a sample of participants (both adults and adolescents) for the
in-depth interviews. The investigators will randomly select a subset of participants from the
larger sample, who may be stratified by age, gender, work-related vs. non work-related
injuries, or other injury characteristics. This depends on the participant data available.
The investigators plan to include approximately 50 participants for the qualitative in-depth
interviews at approximately 6 months from discharge from the hospital. Once data is
stratified, individuals who have consented to participate in the qualitative portion will be
randomized and asked to participate in the full interview.

In depth interviews will be conducted with 25 participants each grant year (total of 50
participants). The interviews will consist of more in depth questions related to functioning,
symptoms, stressors, services available, services utilized, financial and community
resources, gaps in service delivery, perceptions of discharge preparation, satisfaction with
services received, emotional and physical preparedness during recovery stages, and short and
long term worries and goals.

Interviews will be recorded and transcribed by a professional transcription service (no
identifiable data will be included in recordings).

Data Collection from hospital staff:

The investigators will use a survey to ask hospital staff about their perceptions of
hospital-based service utilization. The goal is for 15 staff members to complete either the
on-line or in person survey. Data collected from hospital staff will be entered into
Qualtrics (for in person interviews) and directly entered into Qualtrics online.

Study Participants:

The investigators anticipate that 300 participants will be enrolled in the study over a two
year period.

Inclusion Criteria for Adults and Adolescents:

- Ages: 16 years and older

- Males and females

- Individuals with burn related injuries requiring a skin graft and in the hospital long
enough to complete the first assessment.

Exclusion Criteria

• Individuals with burn related injuries, but who do not receive skin grafts. Individuals who
are physically or mentally unable to give consent for participation.

Inclusion Criteria for Mercy Hospital Staff:

- Currently working in the St. Louis Burn Center in Mercy Hospital

- Males and females

Recruitment, Informed Consent, and Financial Information:

When patients in the Burn Center are physically stabilized, the hospital staff will inform
patients of the study. They will have the option to participate in a pre-screening meeting
where the PI goes through the study and consent information.

Consent will take place once hospital staff determine that the patient is physically,
medically stabilized, before discharge. With input from other hospital staff, the Physician
Assistant will make the final determination if the patient is ready to be asked about their
participation in this study. The PA will use both written materials and the script to give
information to potential participants. Potential participants will be given time to consider
their participation while in the hospital, with understanding that participation would start
before discharge.

Both consent from parents and assent from individuals will be required for any adolescents in
the study. They will have full access to mental health services during their hospital stay.
They will also be given information about community mental health services available. If any
current abuse or neglect is reported, the study PI will follow reporting guidelines to ensure
the safety of the child.

The youngest children will be 16 and 17 years old and will be asked for the assent for
participation. Participants can stop their participation at any time and can skip any
questions. Questions do not go beyond typical psychological examinations. Participants will
have access to mental health services.

Hospital staff will be notified about the study during weekly staff meetings and via email.
They will directly contact the PI if they would like to participate in the study. After
signing consent forms, they will decide if they would like to participate in the online
survey or in the in person interview meeting.

Risk Assessment:

Participants may feel discomfort while answering questions related to personal information
and symptoms, especially if they have negative memories associated with the topics or
experiences.

Participants will have access to in-hospital psychological and counseling services. After
discharge, they will have access to community resources that provide mental health services.
In addition, participants will be informed that they can stop their participation at any time
and they can skip any questions that make them uncomfortable.

Due to the nature of some of the questions in the questionnaires, the PI collecting data will
continually check-in with study participants and monitor any symptoms, feelings, and thoughts
that come up during the meetings or interviews. Because of the sensitive nature, the meetings
will take place in person, so the PI collecting the data can visibly monitor participant
responses. In addition, between instruments, the PI will ask the participant if she/he is
able to continue and if she/he is experiencing any distress. If a participant discloses
intention to harm self or others, the PI will follow Missouri state reporting laws. If a
participant reports distress and/or strong emotions that they feel that they cannot
self-regulate or regulate through grounding and relaxation techniques utilized by the PI, the
PI and participant will decide the best course of action. If the meeting is held outside of
Mercy Hospital, this may include calling 911 or accompanying to the nearest hospital. The PI
will also have a list of community mental health resources that she will give to study
participants and assist participants to make appointments, when appropriate. While in the
hospital, the participant can be referred to psychological and counseling services, if she/he
is not already actively receiving services. The PI will ensure that the hospital clinical
staff members are aware of any reported distress (with participant permission).

Potential Benefits

There is no known direct benefit to individual participants.

This research study is significant in multiple ways. This study involves two major research
areas that have been identified as priority areas: further understanding of psychosocial
factors associated with burn related injuries and intervention related research. The proposal
includes an in depth analysis of multiple psychosocial factors that have been identified as
needing further study. The study also involves a needs assessment related to intervention
strategies currently utilized at Mercy Hospital St. Louis Burn Center and has the potential
to impact service delivery and utilization by identifying factors related to successes,
facilitators and barriers, perceived gaps in service, and perceptions in discharge
preparation. The results of this study can guide policy, practice, and future research both
at a local and national level.

Understanding the psychosocial factors related to burn related injury survivors is important
to improve current services for individuals and their families and develop needed services.
Identifying facilitators and barriers also aids in ensuring that individuals and their
families have access to these services. Ultimately, participation in the study adds to the
small knowledge base that seeks to alleviate psychological and emotional distress that
individuals and their families experience.

Data Confidentiality and Participant Privacy:

Participants will be assigned an ID number that will be utilized on all documents. The ID
number and name key will be held on the PI's computer, which will be password protected. Any
health information utilized for the study will be entered using only the ID number. Only the
PIs will have access to the data obtained in this study. Electronic data will be password
protected. Paper data (only containing ID numbers) will be stored in a locked file cabinet in
a locked office. Data collected from hospital staff will be entered into Qualtrics (for in
person interviews) and directly entered into Qualtrics online. Therefore no information from
the hospital staff will be kept at Mercy Hospital.

Inclusion Criteria:

- Individuals with burn related injuries requiring a skin graft and in the hospital long
enough to complete the first assessment.

Exclusion Criteria:

- Individuals with burn related injuries, but who do not receive skin grafts.

- Individuals who are physically or mentally unable to give consent for participation.