final riala market research project

Kathryn Almeida, Andrew Buckley, Norris Polk, and Lauren Yany

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TABLE OF CONTENTS

Title Page____________________________________________________________________________________1

Table of Contents_________________________________________________________________________2-‐4

Company Profile__________________________________________________________________________5-‐6

Oxygen Therapy Analysis________________________________________________________________7-‐8

Problem Definition_________________________________________________________________________ 9

Current Rules and Regulations_______________________________________________________10-‐11

Research Goals & Objectives_____________________________________________________________ 12

RIALA Goals & Objectives________________________________________________________________ 13

Demographics_________________________________________________________________________ 14-‐16

Rhode Island State Demographics_______________________________________________14

Consumer Demographics_________________________________________________________15

Administrator Demographics____________________________________________________16

Research Process Phases _____________________________________________________________17-‐18

Timeline________________________________________________________________________________19-‐20

Research Methodology_______________________________________________________________ 21-‐23

Consumer Surveys________________________________________________________________21

Administrator Surveys___________________________________________________________ 23

Data Analysis__________________________________________________________________________ 24-‐26

Focus Group Analysis_____________________________________________________________24

Consumer Survey Analysis_______________________________________________________25

Administrator Survey Analysis__________________________________________________ 26

Recommendations________________________________________________________________________ 27

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Error___________________________________________________________________________________ 28-‐29

Appendices____________________________________________________________________________ 30-‐53

Appendix A (Lung Diseases)_________________________________________________ 30-‐31

Appendix B (Interview with Robert Castiglione)___________________________32-‐33

Appendix C (Administrator Survey) ________________________________________ 34-‐35

Appendix D (Consumer Survey) _____________________________________________36-‐37

Appendix E (Administrator Survey Demographics)________________________38-‐39

Appendix F (Administrator Survey Question Five)____________________________ 40

Appendix G (Administrator Survey Question Six_______________________________40

Appendix H (Administrator Survey Question Seven)__________________________41

Appendix I (Administrator Survey Question Nine)_________________________42-‐43

Appendix J (Administrator Survey Question Ten)______________________________43

Appendix K (Administrator Survey Question Eleven)_________________________ 44

Appendix L (Administrator Survey Question Twelve)_____________________44-‐45

Appendix M (Administrator Survey Question Fourteen) _____________________ 45

Appendix N (Administrator Survey Question Fifteen)_________________________46

Appendix O (Consumer Survey Demographics)____________________________46-‐47

Appendix P (Consumer Survey Question Four)________________________________ 48

Appendix Q (Consumer Survey Question Five)_________________________________48

Appendix R (Consumer Survey Question Six)__________________________________ 49

Appendix S (Consumer Survey Question Seven)_______________________________ 49

Appendix T (Consumer Survey Question Eight)________________________________50

Appendix U (Consumer Survey Question Nine)____________________________ 50-‐51

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Appendix V (Consumer Survey Question Thirteen)____________________________51

Appendix W (Consumer Survey Question Fourteen)__________________________ 52

Appendix X (Consumer Survey Question Fifteen)______________________________52

Appendix Y (Consumer Survey Question Sixteen)_____________________________ 53

Appendix Z (Consumer Survey Question Seventeen)__________________________53

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COMPANY PROFILE

Rhode Island Assisted Living Association, commonly referred to as RIALA, is

the member association for assisted living communities within the state of Rhode

Island.

For those of you who are unaware of the term ‘assisted living,’ these

communities are geared to ensure independence in areas where elderly are

comfortable, but cushions them in the area’s where they are not as comfortable.

According to their mission statement, RIALA “we represent the interests of assisted

living communities in Rhode Island by advocating for the highest level of

independence and quality of life for our residents.”

Rhode Island Assisted Living Association is nationally affiliated with the

Assisted Living Federation of America, ALFA. This association is a liaison between

the healthcare providers and administrators. The company is responsible to act as

an educator for the different communities, as an educator for people interested in

taking CNA courses to better their occupational situations, and both a role model

and educator for interns from various institutions across the state of Rhode Island.

There are currently sixty-‐three different communities paying dues to RIALA to

receive their benefits.

Kathleen Kelly, Kathleen Smith, and Melody Song are the faces of RIALA, and

are always very cheerful when answering a million emails or a trillion telephone

calls. Kathleen Kelly, executive director of the office, has been with the company for

a little over ten years. She works to create Kelly also reports to the Board of

Directors on all business of the association. Kathleen Smith is the office’s manager.

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One of her many job tasks is to be the contact for RIALA’s many different members,

and their involvement with the company. Melody Song, the company’s project

coordinate, is a recent Rhode Island College graduate who was hired with the

company in 2014. One of her roles for RIALA is to act as the company’s liaison

between RI College interns and the intentions of RIALA. There is always a lot of

work being done at the office, located in East Providence.

This company is governed by a Board of Directors elected by the

membership, according to the by-‐laws of this association. There are nine faces of

the RIALA board, elected annually at the January membership meeting.

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OXYGEN THERAPY ANALYSIS

There are many different diseases that affect your lungs and breathing

according to the American Lung Association. When a person is unable to breathe,

whether it is from a disease or any other situation, that person is mentally and

physically in a terrible state. Imagine swimming in a large body of water requiring

you to hold your breath for long periods of time. If you are not used to holding your

breath for that long the feeling is very uncomfortable and could cause the person to

want to give up. Now imagine that feeling every time you try to accomplish

something in your life. That is the feeling of a patient in need of oxygen

supplementation.

Acute Bronchitis, Acute Respiratory Distress Syndrome (ARDS)*, Asbestosis*,

Asthma, Bronchiectasis, Bronchiolitis, Bronchiolitis Obliterans with Organizing

Pneumonia (BOOP)*, Bronchopulmonary Dysplasia*, Byssinosis*,

Coccidioidomycosis, Chronic Obstructive Pulmonary Disease (COPD)*, Cryptogenic

Organizing Pneumonia (COP)*, Cystic Fibrosis, Emphysema*, Hantavirus Pulmonary

Syndrome (HPS)*, Histoplasmosis, Human Metapneumovirus (hMPV),

Hypersensitivity Pneumonitis, Influenza, Lymphangioleiomyomatosis (LAM)*,

Mesothelioma, Middle Eastern Respiratory Syndrome (MERS), Nontuberculosis

Mycobacteria, Pertussis, Pneumoconiosis*, Pneumonia, Pulomary Fibrosis*,

Respiratory Syncytial Virus (RSV)*, Sarcoidosis, Severe Acute Respiratory Syndrome

(SARS), Silicosis*, Sleep Apnea, Sudden Infant Death Syndrome (SIDS), and

Tuberculosis are all diseases and conditions that can effect the proper functions of

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the lungs. The starred items on the list are the conditions that could result in the

usage of oxygen therapy.

People requiring oxygen assistance do not necessarily need the oxygen

twenty-‐four seven. There are people who require the oxygen only when they sleep

at night and there are people who require the oxygen concentrators more than

oxygen tanks. Every situations every person with these conditions

*See Appendix A

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PROBLEM DEFINITION

A person in need of oxygen therapy could require assistance in both the

simplest and most skilled ways. In today’s day in age the most recent set of rules

and regulations for patients with the distribution of oxygen states that only a nurse

can assist a patient requiring any form of oxygen assistance. A patient could need

the simple assistance of plugging their machine back into the wall because they have

rolled over in their sleep causing the wire to disconnect from the outlet. That

patient could also need the simple assistance of a bed bath while using oxygen

assistance. Other problems patients need assistance with is getting to know the

machines if they have been recently diagnosed with oxygen, learning when to call

for help with oxygen level management, or simply knowing the difference between

needing their oxygen dose turned up or needing to get a bite to eat. As of today, the

current rules and regulations for CNAs in a hospital setting are very limited when it

comes to oxygen assistance. According to the regulations in place by the state of

Rhode Island family members (no degree or license necessary, registered nurses or

medical doctors are the only professions permitted to care for these patients.

Current professor at Rhode Island College, Robert Castiglione agreed to sit

down with us and discuss his experience with a lifetime of smoking and his recent

diagnosis with COPD.

See Appendix B

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CURRENT RULES AND REGULATIONS

Assisted Living facilities within the state of Rhode Island can only accept or

retain a resident who requires the use of oxygen gas if the resident is mentally and

physically capable of operating the equipment, determine how much oxygen they

need, and are able to administer it themselves (with the exception of the probable

assistance from a registered nurse).

Listed below are a few regulations assigned by the department of health of

the state of Rhode Island:

• Facility’s staff is required to have the knowledge and ability to operate

the oxygen equipment, however, are not allowed to assist the resident

due.

• Only a registered nurse or medical doctor is regulated to assist patients,

NOT a CNA, LPN, MedTech, etc.

• Facility has to have appropriate signage of oxygen being in use:

o “No smoking-‐ oxygen in use”

o Smoking prohibited

o Said to be not portable and have to be secured to wall or stand

• Plastic tubing for oxygen use must be long enough to allow movement

• Equipment is operable

• Equipment removed when no longer in use

• Room size must accommodate equipment

• Facility may accept/retain resident who require liquid oxygen if:

o License obtains prior approval from licensing agency

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o Resident is mentally and physically capable of operating the

equipment

o Must be able to determine his/her need for oxygen and able to

administer it themselves

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RESEARCH GOALS AND OBJECTIVES:

• Allow assisted living providers to assist to residents with COPD and all

other illnesses that require the use of oxygen therapy

• From research, group discovers that people on oxygen assistance do not

need as much assistance as assumed

• We discover that patients are much more self sufficient than assumed

• We discover exactly where assistance is needed by patients, whether it be

that they need dosage changed often or simple tasks as adjusting wires

for the patients

• Today’s technology (21st century technology) is much easier to use than

the technology patients needed back when the most recent rules and

regulations were developed (20th century technology)

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RIALA GOALS AND OBJECTIVES:

• Results of survey work in favor of RIALA, proving that those needing

oxygen therapy can do so self sufficiently

• Change the rules and regulations for all assisted living providers to allow

CNAs, LPNs, or MedTechs to assist residents

• Assisted Living facilities can squash the ideas that patients needing

oxygen supplements are not welcome, and are actually a pain, in assisted

living

• People requiring oxygen won’t feel helpless when they require assistance

and the staff around them can finally help

• Long-‐Term Goal: patients with illnesses requiring oxygen therapy will

more likely choose assisted living facilities over living at home or within

nursing homes

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DEMOGRAPHICS

Rhode Island State Demographics

According to the Rhode Island census:

• 15.7% of the population is over 65 years old (149,775 people)

o 8.8% of that are females

o 6.9% of that are males

According to the 2014 American Lung Association’s Estimated Prevalence and

Incidence of Lung Disease:

• Estimated 19.7 thousand people were diagnosed with Pediatric

Asthma

• Estimated 89.9 thousand people were diagnosed with Adult

Asthma (18+)

• Estimated 54 thousand people were diagnosed with COPD

• Estimated 700 people were diagnosed with Lung Cancer

According to the AARP’s 2014 Quick Facts on Social Security:

• Nearly all Rhode Island residents age 65 or older receive Social

Security

• Rhode Island retirees receive about $1267 a month from SS

• Social security lifts 60 thousand Rhode Island retirees from

poverty

• Social Security is the only source of income for one in three Rhode

Islanders 65 or older

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Consumer Demographics

It became apparent to our group that most people filling out the surveys

were from the same background. Most people filling out the surveys were women,

but a few were males. Due to the fact that the state of Rhode Island is highly

populated with white people, white men and women were more available to fill out

our surveys. There was only one person of Native American decent was available to

take our survey. Of these people, all seem to have been diagnosed with COPD, with

the exception of one person who was diagnosed with Lung Cancer. All of the people

who filled out our survey were of the elderly population, and within the ages of sixty

and ninety years old.

Based on the questions we asked the consumers, all seem to be in a rough

physical state, due to their diagnosis, but almost all patients were able to maintain

their own medication. Most respondents stated that they had a difficult time

performing everyday tasks such as walking up flights of stairs, carrying laundry

baskets, and maintaining yard work.

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Administrator Demographics

As expected, most the respondents were female nurses. Of all conducted

surveys, only two males were available to contribute to the data. Similar to the data

gathered from the consumer surveys, because of the Rhode Island state population

most of the medical professionals we found were white females. Seventy five

percent of the survey respondents were white, while the other twenty-‐five percent

were African American, Asian, or Hispanic.

Nurses, CNAs, and Respiratory Therapists seemed to offer the most

information to our research project. Most of these people were resistant at first, but

after hearing the intentions of the research, filled out the surveys as requested.

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RESEARCH PROCESS PHASES

Phase One

Meet with client for complete list of topics needed to hit the situations form

all angles in order to make a bigger impact in changing the regulations of Oxygen

Therapy in Assisted Living. These include dissection of the regulations in Rhode

Island and surrounding areas. Also, by getting a better point of view from first hand

parties such as administers and users.

Phase Two

Gather and examine the background of different medical experts in order to

define a better understanding of what oxygen therapy entails. These would consist

of registered nurses in different demographics and expertise to better understand

what they think of oxygen therapy as well as the regulations of the states.

Phase Three

Conduct two levels of focus groups consisting of about fifteen oxygen therapy

users and ten oxygen therapy administers regarding their opinions, knowledge, and

stories of life with oxygen therapy in order to develop and analyze the top five

issues with the current assisted living regulations and finding better solutions. This

gives a better reading to determining if the current regulation is still appropriate to

the modern age and constantly updating world we live in.

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Phase Four

The results from the focus groups will be transferred from the most

important facts and topics of oxygen therapy from a provided survey in the focus

group to if a newer modern solution is more appropriate or not for an the existing

regulation. Survey respondent findings will be analyzed through different statistical

software in order to ensure accurate quantitative results. These results will help us

appropriate the regulation to how technology and the conditions are now, from

when the regulation was stated in 1995.

Phase Five

The quantitative results obtained through data analysis will be presented in a

multidimensional scaling format. A full report of all findings will be made available

to the Board along with a solution to updating the regulation.

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TIMELINE

January 20h, 2016: Classes begin

February 1st, 2016: Professor Ramocki introduces projects to the

three groups

February 3rd-‐21st: Group researches COPD and the background of

COPD within assisted living facilities

February 22nd, 2016: Research group meets with Kathleen Kelly to

adjust expectations and deadlines of COPD

project

February 23rd-‐29th, 2016 Surveys drawn out and participants were

contacted regarding study

March 3rd, 2016 Speak to discharge planners about cooperation

with COPD study. Meeting with Better Breathers

Club to discuss survey distribution at annual

meeting

March 7th, 2016 Better Breathers Club Annual Meeting, surveys

are distributed

March 10th, 2016 Surveys distributed by Kathleen Calandra

through Health Centrix

March 22rd, 2016 Norris Polk meeting with Professor Robert

Castiglione, RI College

March 23rd, 2016 Surveys distributed through RIALA

board members

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April 1st, 2016 Received surveys from hospice nurse, her peers,

and her patients

April 7th, 2016 Distribution of Consumer and Administrator

surveys at the American Lung Association’s Lung

Force Expo

April 10th, 2016 Examination of surveys and data gathered from

the surveys

April 14th, 2016 Presentation of the study at the RIALA Board

Meeting at 8:30

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RESEARCH METHODOLOGY

Consumer Surveys

Surveys were distributed in March to gather information about the

community of people requiring oxygen therapy. While some of the people who took

the survey have not received a diagnosis just yet, a majority of our survey

respondents have had diagnoses of diseases such as COPD, CHS, Pulmonary Fibrosis,

Asbestosis, with the list continuing. We have contacted the Better Breathers club, a

nationwide organization affiliated with The American Lung Association, with a local

chapter at New England Technical Institution in East Greenwich, Rhode Island.

We began the surveys with three simple demographical questions. These

questions were asked with the intentions of discovering the person’s age, race, and

gender. With the demographic information we will able to pinpoint target markets

when selling assisted living to people with lung related illnesses. From the

information in just the first three questions of the survey we are hoping to

differentiate the difference in needs between a fifty-‐two year old Native American

male from an eighty-‐seven year old Hispanic female.

The surveys questions different aspects of a persons physical abilities to

perform tasks. The overall goal of the survey was to discover how physically fit a

person with a lung disease is and how much assistance they usually require. We

were curious to find out exactly how much work this person can do on their own,

without the assistance of a family member, spouse, or CNA. We were curious to

discover what illnesses these people were diagnosed with, what forms of oxygen

therapy they require, and whether or not they were actually interested and open to

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the idea of assisted living. We were curious to discover if those in need of oxygen

supplements use just one form of oxygen daily or if there are ever instances where

they rotate between both tanks and concentrators, or concentrators and liquid

oxygen.

See Appendix B

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Administrator Survey

The administrator surveys were distributed during the second and third

week of March to as many people in contact with people requiring oxygen

supplements as we could come by. Our ideal goal was formed with the intentions to

pass out these surveys to the nurses, doctors, and CNAs that come in contact with

oxygen therapy. From these surveys we are looking to figure out as much

information on patients requiring oxygen from a different point of view. We wanted

to know just what these people need help with, that physicians can assist. We are

looking to learn exactly how easy it is for these patients to access the oxygen due to

accessibility, arthritis diagnoses, and whether or not they are able to adjust the

doses of their medication.

We were looking for the information they could give us to inform RIALA what

could be done differently to make medication administration easier. We also were

wondering if they could change one thing about oxygen assisting, what would that

be? We hope that the information we gain from these surveys will be enough

information to assist RIALA in ways they weren’t assisted before.

See Appendix C

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DATA ANALYSIS

Focus Group Analysis: Better Breathers Club

On March 7th, 2016 members from our market research group attended the

Better Breathers Club meeting at New England Technical Institute in East

Greenwich Rhode Island. At this meeting we were able to not only distribute our

surveys, but also watch the ways people needed oxygen supplements acted. In the

meeting we learned that these people are pretty self-‐sufficient. All oxygen

dependent people within the club meeting were able to sit there and fully function

on the oxygen supplements they were already connected to. The people using

oxygen did not need someone to run up as assist them every fifteen minutes, and the

tasks were simple and did not need advanced medical attention, as the rules and

regulations state.

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Consumer Survey Analysis

After analyzing the surveys we discovered that almost all the people

diagnosed with COPD were the ones to participate. These people gave us all the

necessary information. When asking these participants if they needed help

managing their illness sixty percent of the respondents stated they did. The

following question then asks if the participants would take the help if the help were

available. To that question almost eighty percent of the people would take the help

over the twenty percent who would not.

We then asked other questions such as whether or not they would accept

assisted living, whether or not they are using an oxygen tank or concentrator, how

much assistance they need with medication adjusting, and who helps them with the

adjust.

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Administrator Survey Analysis

The administrator surveys teach us the case-‐to-‐case information about lung

related illnesses that we could not find elsewhere. From the survey we learned that

less than half the people diagnosed with a lung related illness require oxygen

assistance. I think the most important factor in knowing this understands that just

because someone does not use oxygen today does not mean they won’t need it next

week. The surveys help us stop generalizing the everyday stereotypes of the elderly

population. It’s assumed that older people have been diagnosed with arthritis and

have memory loss. Our surveys have taught us otherwise.

The administrator surveys have taught use exactly where people are

struggling with their illnesses (Placing cannulas inside the nose, filling/changing

their tanks, limited range with tubing, activity tolerance with daily functioning). We

went on to ask whether or not people can carry the oxygen on their own, whether

they need medication adjusted frequently, or whether they just need help switching

from a concentrator to a tank. We asked what could be done to make oxygen

distribution made easier and received some feedback that could really benefit the

consumers.

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RECOMMENDATIONS

One recommendation we have with this project is that a partnership with a

larger hospital should have been set up before hand. If we were conducting these

surveys and telling our consumers and administrators that we were Rhode Island

College marketing students partnered with the RIALA “along with Rhode Island

Hospital,” then the title carries further. We feel that because a lot of people are

unaware of the Rhode Island Assisted Living Association. Unfortunately, the few

people who are aware are also the ones who are very quick to say that assisted

living is not for them.

After speaking with Rachel Hill, Respiratory Therapist and coordinator of the

Better Breathers Club, we were given information on the way people deal with their

illnesses. We also spoke to other Respiratory Therapists at the Lung Force Expo who

feel as though they should be hired in assisted living communities. We feel as

though this is one of the best recommendations we can give to RIALA. The upside of

this option is that it is cheaper to hire a Respiratory Therapist than it would be to

hire a Registered Nurse.

Lastly, our final, and most obvious, suggestion to RIALA would be for the

Department of Health to change the regulations for oxygen therapy within assisted

living facilities. If a Licensed Practicing Nurse (LPN), Certified Nursing Assistant

(CNA), and a Medical Assistant (MA) were allowed to assist patients in these areas

than more people using oxygen therapy would qualify for assisted living.

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ERROR

Due to the Rhode Island Health Information Privacy Act gives medical

facilities a duty to their patients and clients to respect their rights to request

restrictions on Protective Health Information (PHI) uses and/or disclosures, the

right to requisition confidential communications, the right to access a copy of any

clients PHI, the right to requisition and amendments of a patients PHI, and the right

to an accounting of disclosures of the clients PHI. Under these circumstances, HIPAA

has blocked off any anonymous survey of medical professionals giving opinions and

stance on oxygen therapy in regard to background and experience.

Health insurance Portability and Accountability Act, commonly known is

HIPAA, was passed in 1996.

According to the HHS:

Who must follow these laws?

• Health Plans (Including health insurance companies, HMOs, company

health plans, and Medicare/Medicaid)

• Most Health Care Providers (Those who conduct certain business

electronically, such as electronically billing your health insurance)

• Health Care Cleaning Houses (Entities that process nonstandard health

information they receive from another entity into a standard, or vice

versa)

• In addition, business associates of covered entities must follow parts of

the HIPAA regulations.

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What information is protected?

• Information your doctors, nurses, and other health care providers put in

your medical record

• Conversations your doctor has about your care or treatment with nurses

and others

• Information about you in your health insurer’s computer system

• Billing information about you at your clinic

• Most other information about you held by those who must follow these

laws

Although the fear of violating HIPAA regulations was our biggest error when

conducting the research, we came an additional form of error in the research

collection. Every case with every person is different. It was very hard to pin point

exactly who will need oxygen assistance, at what point in their diagnosis, and how

much oxygen is right for them. As hard as it is for the Department of Health to

generalize the conditions of each and every person diagnosed with a lung condition,

it is even harder for this generalization to be proven wrong. A person could be

diagnosed with lung cancer requiring oxygen therapy, arthritis on their fingers, and

poor eyesight. Although this person is physically fit enough to qualify for assisted

living, they would be over looked due to the fact that their poor eyesight matched

with arthritis causes issues in managing their own oxygen.

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APPENDIX A-‐ LUNG RELATED DISEASES THAT DO AND DO NOT REQUIRE

OXYGEN THERAPY

Acute Bronchitis Lower respiratory track inflammation affecting the air tubes (Bronchi) of the lungs. Comes suddenly and lasts 3-‐10 days.

Acute Respiratory Distress Syndrome (ARDS)

Rapidly progressive disease occurring in critically ill patients. Main complication in ARDS is that fluid leaks into the lungs making breathing difficult.

Asbestosis Chronic lung condition caused by prolonged exposure to high concentrations of asbestos fibers in the air

Asthma Lung disease that makes breathing difficult. Nor cure for asthma, but it can be managed and treated.

Bronchiectasis Chronic condition where the walls of the bronchi are thickened from the inflammation and infection. Periodic flare-‐ups of breathing difficulties called exacerbations.

Bronchiolitis Obliterans with Organizing Pneumonia (BOOP)

Commonly referred to today as Cryptogenic Organizing Pneumonia (COP)

Bronchopulmonary Dysplasia Chronic lung disease that affects newborns and infants. You can recover from BPD, but some have long term breathing difficulties (resulting in oxygen use later in life)

Byssinosis Occupational lung disease primarily affecting workers in cotton processing, hemp, or flax industries.

Coccidioidomycosis Also called valley fever, infection in southwest US primarily affecting lungs

COPD Chronic Bronchitis and Emphysema *Treatable, but not reversible

Cryptogenic Organizing Pneumonia (COP)

Rare lung condition affecting small airways, alveoli, and the walls of small bronchi. Pattern of lung damage involves inflammation and stiffening of affected lung areas with connective tissues.

Cystic Fibrosis Inherited disease thickens mucus forming in lungs, pancreas, and other organs. Life threatening condition.

Emphysema Damage of lung tissue, destruction of the alveoli or air sacs.

Hantavirus Pulmonary Syndrome (HPS)

Viral illness from inhaling infected rodent urine, droppings, and saliva

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Histoplasmosis Infection caused by Histoplasma Capsulatum Human Metapneumovirus (hMPV)

Respiratory virus that causes upper respiratory infection

Hypersensitivity Pneumonitis Disease of the lungs (allergic reaction to dust, functions, molds, chemicals)

Influenza Respiratory illness that is highly contagious, but fully recoverable

Lung Cancer Leading cancer killer of Men and Women in the United States

Lymphangioleiomyomatosis (LAM)

Rare disease for women in their 30s-‐40s. Progressive disease affecting lungs and breathing.

Mesothelioma Rare cancer, caused from exposure to asbestos (insulation industry)

Middle Eastern Respiratory Syndrome (MERS)

Viral disease that can cause lung infection and kidney failure

Nontuberculosis Mycobacteria (NTM)

Organisms infect airways and lung tissue leading to disease

Pertussis Whooping cough, contagious respiratory tract infection caused by bacteria

Pneumoconiosis Any lung disease caused b dusts (occupational disease) black lung disease

Pneumonia Lung infection caused by bacteria, virus, fungi Primary Ciliary Dyskinesia (PCD)

Genetic condition that can lead to chronic ear, sinus, pulmonary disease, reversed or flipped organs and fertility issues

Pulmonary Fibrosis Similar to interstitial lung diseases that result in lung scaring, makes it very hard to breathe

Respiratory Syncytial Virus (RSV)

Respiratory virus similar to common cold

Sarcoidosis Immune system overreact (Causes lung damage) Severe Acute Respiratory Syndrome (SARS)

Infectious condition causes serious respiratory illness or death

Silicosis Breathing tiny pieces of silica causes scaring to lungs, affects breathing

Sleep Apnea (OSA) Obstructive Sleep Apnea, Disease stopping and starting breathing during sleep

Sudden Infant Death Syndrome (SIDS)

Unexpected cause of death of infants

Tuberculosis Infectious disease usually affects lungs ** Highlighted diseases require oxygen assistance

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APPENDIX B-‐ INTERVIEW WITH PROFESSOR ROBERT CASTIGLIONE

Rhode Island College’s philosophy professor, Robert Castiglione, was

recently diagnosed with COPD (Chronic Obstructive Pulmonary Disease,) at the age

of seventy-‐two. This long-‐term smoker had been smoking for fifty-‐five years, until

his diagnosis caused him to quit on the spot. He stated during his interview that his

work at RI College has been hindered due to the COPD. He states that he has slowed

down a lot and his course load went from teaching four classes a semester to three.

He told us about the commitment necessary for living comfortable with this disease.

He said that rehab, regular exercise, excellent medical assistance, and being open to

treatments is the best way to life a close to normal life with COPD. Castiglione is not

currently using oxygen therapy as a form of medication for his condition, but he is

aware of the concept and knows people who do. Castiglione states that ‘COPD is

debilitating when it goes untreated.’ He informed us that having good doctors is

vital to living with the condition, and rehabilitation is a major key. He stated that his

rehabilitation for pulmonary and cardiac problems were performed at both South

County Hospital and Kent Hospital, and both locations had a phenomenal work staff.

As asbestos is also a leading cause of COPD, Castiglione states that that is a

very painful form of the disease. Those people who have asbestos caused COPD

suffer a lot more than those who go the disease from a lifetime of smoking,

according to the professor. He states that medication improvements help people life

comfortable lives and he is grateful to live in a world where there is an abundance of

medical research on his condition.

33

We asked the professor what exactly his take was on assisted living

communities. He says that he supports the idea of assisted living and he feels as

though they should be able to accommodate patients requiring oxygen therapy. He

has told us that based on word of mouth of those around him, people his age group

have a favorable attitude towards assisted living. A large portion of today’s society

have zero to no information on assisted living, and the ones who are informed feel

that they are not ready.

34

APPENDIX C-‐ CONSUMER SURVEY

Survey'for'Patients:'Please'circle'the'answers'to'the'questions'below.'Demographics'I'am'within'the'age'bracket:'40@50' ' 51@60' ' 61@70' ' 71@80' ' 81@90' ' 91+''I'am'a:'' ' Male' ' ' Female''I'am:'' ''''''White' African'American' '''Hispanic' ''Asian'''''''''Native'American''I'consider'myself'fit'enough'to'walk'up'a'flight'of'stairs.'Strongly'agree'' Agree' ' Disagree' Strongly'Disagree'' ''I'consider'myself'fit'enough'to'walk'up'a'flight'of'stairs'with'a'basket'of'laundry.'Strongly'agree'' Agree' ' Disagree' Strongly'Disagree'' ''I'consider'myself'fit'enough'to'shovel'snow/rake'leaves.'Strongly'agree'' Agree' ' Disagree' Strongly'Disagree'' ''I'need'much'help'managing'my'illness.''Strongly'agree'' Agree' ' Disagree' Strongly'Disagree'' ''I'would'accept'help'if'help'was'available.''Strongly'agree'' Agree' ' Disagree' Strongly'Disagree'' ''I'would'consider'assisted'living.''Strongly'agree'' Agree' ' Disagree' Strongly'Disagree'' '' ' If'not,'please'state'why_____________________________________________________''Do'you'have'a'COPD'diagnosis?'Yes' ' ' no' ' ' self@diagnosed''

35

'

I'am'using'an'oxygen'tank,'oxygen'concentrator,'or'some'other'form'of'oxygen'

assistance.'

Yes' ' ' No' ' If'yes,'please'specify'which_________________________'

'

What'could'you'compare'the'weight'of'your'oxygen'assistance'to?'

A'notebook' ' A'bag'of'flour'' A'gallon'of'milk' A'24@pack'of'Water'

' ' ' ' Other:_____________________________'

'

How'often'do'you'use'oxygen'assistance'to'supplement'your'breathing?'

Nightly' ' Daily' ' ' Both' ' ' Less' ' I'don’t'

' ' If'less,'please'explain'why__________________________________________________'

'

To'adjust'my'medication'at'home'it'usually'takes:'

Myself'alone''''''''''''Myself'+'1'person'''''''''''''Myself'+'2'people'''''''''''''I'don’t'need'help''

'

If'you'do'need'help'at'home,'who'helps'you?'

Spouse' Sibling'' Child' ' Friend'' Medical'Aid' ''''''''''No'one'

'

If'you'have'been'diagnosed'with'COPD,'what'do'you'think'caused'this'diagnosis?''

Smoking' ' Second@hand'smoke' ' Factory'use' ' Past'Asthma'

' Other:__________________' ' Prefer'not'to'answer'

'

Please'share'any'other'information'you'would'like'to'share'regarding'your'COPD'

diagnosis,'oxygen'use,'or'your'reasoning'behind'joining'the'better'breathers'club:'

'

'

'

'

'

'

36

APPENDIX D-‐ ADMINISTRATOR SURVEY

Survey'for'administers:'Please'circle'the'answer'you'agree'with'the'most.''I'am'within'the'age'bracket:'25>35'' ' 35>45'' ' 45>55'' ' 55>65'' ' 65+''I'am'a:' ' ' Male' ' ' Female''I'am:''''''''White' African'American''''Hispanic' ''Asian' ''''''''Native'American''What'is'your'specific'role'in'the'medical'business:'_______________________________________''More'than'half'of'those'diagnosed'with'a'lung'related'illness'require'oxygen'assistance.'Strongly'agree'' Agree'' Disagree' Strongly'Disagree'' ''Most'of'these'people'diagnosed'with'a'lung'related'illness'are'also'memory'care'patients.'Strongly'agree'' Agree'' Disagree' Strongly'Disagree'' ''Most'of'these'people'diagnosed'also'have'arthritis.''Strongly'agree'' Agree'' Disagree' Strongly'Disagree'' ''Patients'on'oxygen'need'assistance'fixing/adjusting'their'oxygen'often.'Strongly'agree'' Agree'' Disagree' Strongly'Disagree''' 'If'so,'what'exactly'do'they'struggle'with?'_________________________________________________'

37

'People'using'oxygen'are'able'to'carry'it'on'their'own.'Strongly'agree'' Agree'' Disagree' Strongly'Disagree'' ''People'using'oxygen'need'their'medication'levels'adjusted'frequently.'Strongly'agree'' Agree'' Disagree' Strongly'Disagree'' ''People'need'to'help'switching'from'a'concentrator'to'an'oxygen'tank?''Strongly'agree'' Agree'' Disagree' Strongly'Disagree'' ''If'so,'what'exactly'do'they'seek'help'with?'________________________________________________''If'you'could'change'anything'about'the'way'oxygen'is'distributed'what'would'it'be?'''''''How'do'you'think'oxygen'administration'could'be'made'easier?''''

38

APPENDIX E: ADMINISTRATOR SURVEY DEMOGRAPHICS

39

JOB TITLES NUMBER OF PARTICIPANTS

NURSE NINETEEN

CNA FOUR

RESPIRATORY SPECIALIST SIX

40

APPENDIX F: ADMINISTRATOR SURVEY QUESTION FIVE: MORE THAN HALF OF THOSE

DIAGNOSED WITH A LUNG RELATED ILLNESS REQUIRE OXYGEN ASSISTANCE.

APPENDIX G: ADMINISTRATOR SURVEY QUESTION SIX: MOST OF THESE PEOPLE

DIAGNOSED WITH A LUNG RELATED ILLNESS ARE ALSO MEMORY CARE PATIENTS

Q5 More than half of those diagnosed with a

lung related illness require oxygen

assistance.

Answered: 29 Skipped: 0

24.14%

7

13.79%

4

58.62%

17

3.45%

1

0.00%

0

29

2.41

Strongly Agree Agree Disagree Strongly Disagree N/A

0%

20%

40%

60%

80%

100%

24.14%

13.79%

58.62%

3.45%

Strongly Agree Agree Disagree Strongly Disagree N/A Total Weighted Average

1 / 1

administrator SurveyMonkey

Q6 Most of these people diagnosed wth a

lung related illness are also memory care

patients.


0.00%

0

17.24%

5

58.62%

17

24.14%

7

0.00%

0

29

3.07

Strongly Agree Agree Diagree Strongly Disagree N/A

(no label)

0%

20%

40%

60%

80%

100%

17.24%

58.62%

24.14%

Strongly Agree Agree Diagree Strongly Disagree N/A Total Weighted Average

(no label)

1 / 1


41

APPENDIX H: ADMINISTRATOR SURVEY QUESTION SEVEN: MOST OF THESE PEOPLE

DIAGNOSED HAVE ARTHRITIS

Q7 Most of these people diagnosed have

arthritis.


3.45%

1

20.69%

6

62.07%

18

13.79%

4

0.00%

0

29

2.86


(no label)

0%

20%

40%

60%

80%

100%

3.45%

20.69%

62.07%

13.79%


(no label)

1 / 1


42

APPENDIX I: ADMINISTRATOR SURVEY QUESTION NINE: PATIENTS USING OXYGEN

NEED ASSISTANCE FIXING/ADJUSTING THEIR OXYGEN OFTEN.

If so, what exactly do they struggle with?

Going to the bathroom/ ambulating with the oxygen cord

Seeing numbers on the O2

Placing cannula in the nose

Filling/changing tanks

Knowledge deficit

Price of portable tanks

ADL humidity control

Adjustment and maintenance of oxygen delivery devices

Q8 Patients using oxygen need assistance

fixing/adjusting their oxygen often.


6.90%

2

44.83%

13

44.83%

13

3.45%

1

0.00%

0

29

2.45


(no label)

0%

20%

40%

60%

80%

100%

6.90%

44.83% 44.83%

3.45%


(no label)

1 / 1


43

Activity tolerance with daily functioning

Limited range with tubing

Patients trip over clear tubing (they should be colored)

APPENDIX J: ADMINISTRATOR SURVEY QUESTION TEN: PEOPLE USING OXYGEN ARE

ABLE TO CARRY IT ON THEIR OWN.

Q10 People using oxygen are able to carry

it on their own.


6.90%

2

65.52%

19

20.69%

6

6.90%

2

0.00%

0

29

2.28


(no label)

0%

20%

40%

60%

80%

100%

6.90%

65.52%

20.69%

6.90%


(no label)

1 / 1


44

APPENDIX K: ADMINISTRATOR SURVEY QUESTION ELEVEN: PEOPLE USING OXYGEN

NEED THEIR MEDICATION LEVELS ADJUSTED FREQUENTLY.

APPENDIX L: ADMINISTRATOR SURVEY QUESTION TWELVE: PEOPLE NEED HELP

SWITCHING FROM A CONCENTRATOR TO AN OXYGEN TANK.

Q11 People using oxygen need their

medication levels adjusted frequently.


3.45%

1

34.48%

10

55.17%

16

6.90%

2

0.00%

0

29

2.66


(no label)

0%

20%

40%

60%

80%

100%

3.45%

34.48%

55.17%

6.90%


(no label)

1 / 1


Q12 People need help switching from a

concentrator to an oxygen tank.


14.29%

4

39.29%

11

42.86%

12

3.57%

1

0.00%

0

28

2.36


(no label)

0%

20%

40%

60%

80%

100%

14.29%

39.29%42.86%

3.57%


(no label)

1 / 1


45

If so, what exactly do they seek help with?

Transferring from tank to concentrator

Plugging in the concentrator and adjusting the cord around them

Connecting and disconnecting tubing

Transferring the cannula from one to the other and turning on the device

Attaching tubes (Due to poor eyesight/agility/dexterity)

Proper instructions

Adjusting the humidifier

The amount of oxygen remaining in the tank

APPENDIX M: ADMINISTRATOR SURVEY QUESTION FOURTEEN

If you could change anything about the way oxygen is distributed what

would it be?

Find a way to make it easier for both the clients and caregivers

Make smaller concentrators, almost compact, more durable

Better assessment of O2 needs, need someone assigned to tasks

More Comfortable Cannulas, masks, etc.

Make portable tanks inexpensive and more available

More portable at higher flow rates- lighters- longer battery life

Smaller refillable containers

46

APPENDIX N ADMINISTRATOR SURVEY QUESTION FIFTEEN:

How do you think oxygen administration could be made easier?

Shortening length of cords so patients don’t get caught

O2 Terms (Education)

Longer lasting tanks *Have a bulk source

Better adaptor to ease ability to turn on and off, or smaller/ lighter tanks

Medicare guidelines/qualifications

APPENDIX O: CONSUMER SURVEY DEMOGRAPHICS

48

APPENDIX P: CONSUMER SURVEY QUESTION FOUR: I CONSIDER MYSELF FIT ENOUGH

TO WALK UP A FLIGHT OF STAIRS.

APPENDIX Q: CONSUMER SURVEY QUESTION FIVE: I CONSIDER MYSELF FIT ENOUGH

TO WALK UP A FLIGHT OF STAIRS WITH A BASKET OF LAUNDRY.

Q4 I consider myself fit enough to walk up a

flight of stairs.


11.11%

2

22.22%

4

38.89%

7

27.78%

5

0.00%

0

18

2.83


0

2

4

6

8

10

2

4

7

5


1 / 1

consumer surveys SurveyMonkey

Q5 I consider myself fit enough to walk up a

flight of stairs with a basket of laundry.


11.76%

2

5.88%

1

41.18%

7

41.18%

7

0.00%

0

17

3.12


(no label)

0

2

4

6

8

10

2

1

7 7


(no label)

1 / 1


49

APPENDIX R: CONSUMER SURVEY QUESTION SIX: I CONSIDER MYSELF FIT ENOUGH TO

SHOVEL SNOW/RAKE LEAVES.

APPENDIX S: CONSUMER SURVEY QUESTION SEVEN: I NEED MUCH HELP MANAGING MY

ILLNESS.

Q6 I consider myself fit enough to shovel

snow/rake leaves.


5.56%

1

5.56%

1

38.89%

7

50.00%

9

0.00%

0

18

3.33


(no label)

0

2

4

6

8

10

1 1

7 9


(no label)

1 / 1


Q7 I need much help managing my illness.


16.67%

3

44.44%

8

27.78%

5

11.11%

2

0.00%

0

18

2.33


(no label)

0

2

4

6

8

10

3

8

5

2


(no label)

1 / 1


50

APPENDIX T: CONSUMER SURVEY QUESTION EIGHT: I WOULD ACCEPT AVAILABLE

HELP.

APPENDIX U: CONSUMER SURVEY QUESTION NINE: I WOULD CONSIDER ASSISTED

LIVING.

Q8 I would accept help if help was available.


11.11%

2

66.67%

12

16.67%

3

5.56%

1

0.00%

0

18

2.17

Strongly Agree Agree disagree strongly disagree N/A

(no label)

0

4

8

12

16

20

2

12

3

1

Strongly Agree Agree disagree strongly disagree N/A Total Weighted Average

(no label)

1 / 1


Q9 I would consider assisted living.


0.00%

0

35.29%

6

17.65%

3

47.06%

8

0.00%

0

17

3.12

Strongly agree agree disagree Strongly disagree N/A

(no label)

0

2

4

6

8

10

6

3

8

Strongly agree agree disagree Strongly disagree N/A Total Weighted Average

(no label)

1 / 1


51

If not, please state why.

Want to stay at home

Not needed at this time, eventually will need

Live with a nurse

Still able to manage on my own

Too nervous, have anxiety.

APPENDIX V: QUESTION THIRTEEN: CONSUMER SURVEY I AM USING AN OXYGEN

TANK, CONCENTRATOR, OR SOME OTHER FORM OF OXYGEN ASSISTANCE.

52

APPENDIX W: CONSUMER QUESTION FOURTEEN: WHAT COULD YOU COMPARE THE

WEIGHT OF YOUR OXYGEN ASSISTANCE TO?

APPENDIX X: CONSUMER QUESTION FIFTEEN: HOW OFTEN DO YOU USE OXYGEN ASSISTANCE TO

SUPPLEMENT YOUR BREATHING?

16.67% 2

8.33% 1

16.67% 2

25.00% 3

33.33% 4

Q14 What could you compare the weight of

your oxygen assistance to?


Total 12

a notebook a bag of

flour

a gallon of

milk

a 24-pack of

water

I don't use

oxygen.

0

2

4

6

8

10

2

1

2

3

4

Answer Choices Responses

a notebook

a bag of flour

a gallon of milk

a 24-pack of water

I don't use oxygen.

1 / 1


53

APPENDIX Y: CONSUMER SURVEY QUESTION SIXTEEN: TO ADJUST MY MEDICATION, IT TAKES:

APPENDIX Z: CONSUMER SURVEY QUESTION SEVENTEEN: IF YOU HAVE BEEN DIAGNOSED WITH AN

ILLNESS WHAT DO YOU THINK CAUSED THIS DIAGNOSES?

58.82% 10

11.76% 2

0.00% 0

0.00% 0

29.41% 5

Q17 If you have been diagnosed with an

illness, what do you think caused this

diagnosis?


Total 17

Smoking Second-hand smoke factory use asthma prefer not to answer.

58.82%

(10)

11.76%

(2)

29.41%

(5)

Answer Choices Responses

Smoking

Second-hand smoke

factory use

asthma

prefer not to answer.

1 / 1


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