INTRODUCTION

1. METHODS ANALYSIS DATA RESULTS INTERPRETATION INTRODUCTION ANALYSIS REPORT FAMILY MEMBERS

2. 1 INTRODUCTION & OVERVIEW • Overview and purpose of the analysis report/inquiry • Importance of the results • Basic information of hospice care in the healthcare environment • Background information of Vitas Healthcare 2 METHODS & PROCEDURE • Type of data gathering • Type of analysis • Goals from analysis and inquiry 3 DATA RESULTS & CODING • Coding using NVIVO • Compare and contrast • Look for connections and relationships 4 ANALYSIS & THEMES • Content organized into major themes • Concepts of patterns • General issues or key points 5 INTERPRETATION & CONCLUSIONS • Insights and conclusions • Design principles • Suggestions and recommendations t a b l e o f c o n t e n t

3. REPORT OVERVIEW REPORT PURPOSE HOSPICE CARE VITAS HEALTHCARE • Overview of the analysis report, what is the objective? Provide a thorough and well-explained content analysis from a collection of family member interviews. Students will be responsible for interviewing/questioning family members of patients whom are admitted at three specific Vitas Hospice care units throughout Miami-Dade County, FL. Qualitative data of transcribed interviews will be coded and queries will be made in order to provide quantitative data which will analyzed and interpreted; it’s a systematic approach of using interviews as a tool in order to interpret results, discuss implications and draw new concepts. Our responsibility will be to strive to conduct/create good research processes and stay away from poor research processes. • Purpose of the analysis report and inquiry: The primary purpose of this analysis report is to form a conceptual framework of the data results we have gathered, and understand the new knowledge we have created (research) from the qualitative data gathering (interviews). Research, data gathering (via coding and queries) and analysis will be the foundation of which we interpret our findings and may eventually form a conceptualization of underlying patterns and themes of which we retrieve from the interviews. It will allow us to develop new knowledge about the client, service interactions and the culture of the organization from the point of view of the family members. • Forming a conceptual framework of data: To form a conceptual framework of data one must first analyze all data as a whole to find commonalities and search for connections/relationships amongst the categories. Highlight what generalized themes, patterns and concepts exist from your data results. Further analysis is imperative to assess key points, patterns, missing information, how does this new information affect me. • Why are the results important? The results may help us gain insight of the hospice experience from the family members’ perspective and understand what about the whole process affects them and how. The results will provide quantitative data which will be further analyzed in order to define themes, strategic insights, principles and concepts. The results may help aide in understanding how the family member interacts with other staff members and the environment around them. The research will create new knowledge of a hospice environment within a healthcare setting. It may also help develop design principles and recommendations in future healthcare design. 1 introduction

4. REPORT OVERVIEW REPORT PURPOSE HOSPICE CARE VITAS HEALTHCARE • Overview of hospice care: Hospice care provides care , comfort and support for persons with life-limiting conditions which have been given the daunting news that they may only live for the next 6 months or less. Hospices not only care for patients but for their family as well. During their stay, patients will receive treatment (known as palliative care) to help relieve pain and other symptoms causing discomfort. They not only assist physical pain but also emotional and spiritual pain of the patient and family. A hospice: > cannot claim to extend life but rather > improves the quality of life > assists patients with discomfort > so that each day can be lived to the fullest > adds quality and dignity > ensuring that the remainder of the journey is not undertaken alone • What specific services are generally provided as part of hospice care? Manage pain and other symptoms; overall pain management Provide medications, medical supplies and equipment Offer support with the emotional and spiritual aspects of dying Teach family members skills to help them provide care Provide support and counseling to family members and loved ones Make short-term inpatient care available when pain or other symptoms become too difficult to manage at home • Patient importance in hospice care: • “A hospice is there to help, not to intrude. The closeness of family and friends during terminal illness is recognized. The hospice fully recognizes and respects cultural, ethnic and religious differences. Great care is taken to ensue that these priorities are never forgotten. “ – National Association of Hospice Fundraisers 1 introduction

5. REPORT OVERVIEW REPORT PURPOSE HOSPICE CARE VITAS HEALTHCARE • Quick facts from the National Association of Hospice Fundraisers: • The average stay in a hospice is twelve to fourteen days • Hospice patients are teenagers or adults- 80% of patients will have cancer - The remaining 20% will be suffering from a variety of illnesses - They will receive a great deal of love, care and skilled attention • From trained medical, nursing and support staff- Hospices deal with physical, psychological and spiritual pain • Typical multidisciplinary team includes: • Doctor/Physician • Nurses- Secretary • Social worker • Chaplain • and perhaps a Volunteer • Common interactions and relationships: • Doctor and Nurse • Doctor or Nurse and Secretary • Patient and Doctor or Nurse- Family and Doctor or Nurse • Patient and Family • Patient or Family and Chaplain • Patient or Family and Social Worker • Patient or Family and Volunteer • Family with other patient’s Family Members 1 introduction

6. REPORT OVERVIEW REPORT PURPOSE HOSPICE CARE VITAS HEALTHCARE • Who is VITAS Healthcare? VITAS Healthcare, is the nation’s largest provider in hospice care and has been in operation since 1978. “Vitas” is a derivative of the word “lives”, and this is crucial because it serves as a relationship to the values that they strive to achieve. In their eyes it serves as a symbol to their guiding principle or mission which is “to preserve the quality of life for those who have a limited time to live.” • VITAS and patient importance? “We take an individualized approach to every patient we care for. Our goal is to support our patients and their loved ones through a difficult time. “ • VITAS and south Florida: • VITAS Headquartered in Miami, Florida • VITAS has its roots in Florida, where in 1978 a Methodist minister and a registered nurse began talking about how people were being treated at the end of life • Today VITAS has hospices from Jacksonville at the Georgia border to Tavernier at the gateway to the Florida Keys • VITAS has changed the way Floridians think about what  is important at the end of life and how they choose to die • - VITAS has arrangements with hospitals and other facilities, including14 VITAS inpatient hospice units in South Florida • Why is this important? The basis of this content analysis will be taken from interviews of family members of patient’s which are currently admitted into one of the three following VITAS hospice unit locations: 1. University of Miami 2. Hialeah Hospital 3. Jackson North It may be useful or helpful to understand how the VITAS program works, what is their mission and how they started in South Florida. 1 introduction

7. TYPE OF DATA GATHERING TYPE OF ANALYSIS GOALS • Data gathering: “The process of gathering and measuring information on variables of interest, in an established systematic fashion that enables one to answer stated research questions, test hypotheses, and evaluate outcomes. “ • The type of data gathering used for this analysis: The platform of data gathering used for this analysis was an interview; the act of interviewing. An interview is essentially a research tool in which we gain new information, facts and perspective on how someone sees their world from their eyes. It involves a conversation between two or more people which involves and interviewer which asks questions to the interviewee in order to obtain information that may be pertinent to them. It is similar to a narrative in the aspect that it gathers qualitative data; it captures the interviewee’s emotions and feelings from their perspective or point of view. There are several types of interviews which may be used: topical oral history, life history, evaluation interview, focus group interview, cultural interviews, photo elicitation interviews and photo sorting interviews. • The type of interview used for this analysis: The type of interview used in this case was a topical, semi-structure interview which concentrates on eliciting facts. It focuses on the facts of the experience of the family member from their perspectives rather than our interpretation of the experience. Prior to the interview, a questionnaire was completed with questions of topical issues pertaining to their experience in the VITAS hospice environment. It included questions that involved areas of service, staff relationships, hospice environment, patient room, hospice amenities and their connection to the patient. The interviewer(s) then asked the interviewee these questions and the answers were recorded and later transcribed. The transcripts were then coded/run through queries, then analyzed for patterns or themes which would then be used to create concepts or insights. The interviews were strictly verbal and allowed for a comfortable conversation/discussion. • Why is it the best method for this project? • The topical interview helps us understand the hospice experience from the family members point of view and in their own words to that facts may be extracted in order to find themes amongst the collection of interviews- It helps us understand different stakeholders involved and the relationships between the patient and family • It helps give insight to the culture of the VITAS hospice organization along with associated issues or affordances- The topical interview allows a free flowing conversation which helps elicit their emotions, thoughts and feelings- The semi-structure is informal and allows a more natural and unrestricted approach to gaining new information- If rapport and trust are obtained, the interviewee may feel comfortable opening up to the interviewer - Interview may be similar to story-telling which may allow easy communication of a broad message or set of morals 2 methods

8. TYPE OF DATA GATHERING TYPE OF ANALYSIS GOALS • Analysis: A “detailed examination of the elements or structure of something, typically as a basis for discussion or interpretation“. • The type of analysis used for this project: In this assignment a content analysis was used. A content analysis is a quantitative and qualitative approaches to obtaining new information. It is the analysis of various types of texts and medias into one cohesive study. In this project it combined person-to person discussion, audio recordings, transcribed writings, images of the hospice environment, in person tours of the environment (or images of floor plans), quantitative collection of coding and queriesin order to be interpreted into one thorough and well defined content analysis. • What were the steps, texts and tools used for this content analysis: 1. Information Gathering = Web-based searches + In person hospice tour + Staff to family interactions Knowledge of hospice environment, hospice culture, staff to patient relationships and the VITAS organization 2. Qualitative Analysis = Pre-conceived questionnaire + In person verbal/audio interviews + Transcripts Facts regarding feelings, thoughts and emotions of the hospice experience from the user’s point of view 3. Quantitative Analysis = Coding NVIVO + Queries NVIVO + Quantitative representations (graphs, charts, etc) Exploration of commonalities, major themes, and underlying key points which may be used to create concepts 4. Interpretation = Insights and conclusions + Design principles + Suggestions and recommendations Critical and creative thinking have been put together and communicated thoroughly and effectively • Why is it the best method for this project? • A content analysis engages an active learning process to improve overall student understanding - It is a part of the content analysis which help us derive meaningful concepts and ideas from the interviews - Through the discovery of significant categories and relationships it becomes more saturated and theoretically complete - The results of this step should help develop grounded theories • A content analysis is a method of which different these different texts and medias can be studied to find authenticity, meaning, importance and hierarchies of different information- It will allow commonalities and common themes to be explored between all the family member interviews in order to create a general assessment as the family members as a whole and not as a single individual experience- It provides a thorough research (and not just data gathering) of the experience which is unbiased and non judgmental- It answers questions as “who says/does what, to whom, why to what extent, and with what effect” • It used the data of which we have gathered to the next step and starts answering questions in order to gain insights 2 methods

9. CODING COMPARE & CONTRAST RELATIONSHIPS • What is NVivo and what does it involve? Nvivo is a “qualitative data analysis (QDA) computer software package produced by QSR International”. It works with text-based documents and volumes of information which may undergo levels of data analysis. It is used to code and perform basic queries and create visual representations of the information; such as word frequency, word count, text search, pie graphs, bar graphs, word clusters, word trees, outlines, etc. It organized the content of your information into categories and sub topics in order to later explore themes and patterns. • How was the content analysis performed using NVIVO, what were the steps? 1. Before using Nvivo, collect all transcripts and read them as a whole and take notes, circle important words 2. Try to understand what you are analyzing by taking notes of your first impressions 3. Find, organize and prepare source data - open transcripts in Nvivo - establish nodes - link key words and other meaningful chunks to nodes - make new nodes as you discover new categories and organize them into groups 4. Labeling/Memoing - create conceptual labels (based on the theories we are testing) - go over identification of categories - record your thinking in memos (theoretical notes) - identify half-formed ideas and action notes 5. Axial coding - look for contextual factors - explore actions and interactions 6. Triangulation (seek other information to confirm your interpretation) 7. Create graphical representations of your interpretation and analyis (queries, lists, clusters, graphs, charts, etc) • Why is it the main purpose of this step of the content analysis, why is it a good method? • Coding extracts key words and other meaningful bit of information from the data • It will allow sub topics and categories to be created and theories to be developed • It provides inspiration and verification; and further supports theories and ideas which we may have • It explores the relationships between all the subcategories we have created and identifies relations to other codes • It moves our ideas to the next step because it now has meaning, depth and connections to other nodes 3 data results

10. THEMES PATTERNS KEY POINTS • OVERALL THEMES • family members main need was for the patient to receive optimal ”care” and ”support” from the doctors, nurses and other staff members • family members sought comfort from the staff since they are experienced with this sort of thing • family members and patient felt comfort with the more “knowledge” they “understood” from • speaking to staff members • they sought for compassion and “respect” from staff member interactions or relationships • family members created some sort of rapport and ”trust” or “dependence” from staff members FAMILY STAFF FAMILY PATIENT • family members main goal was for the patient to be “comfortable” and “relaxed” • family members wanted the patient to feel as pain-free as possible • the family wanted to be able to spend quality time with their loved one, ideally uninterrupted • family members ideally would like to be able to do “activities” with the patient • most important thing for family was just being able “to see” the patient; visual connections • they wanted to feel secure and “trust” that the staff members were completing their job • they wanted to be able to “help out” the patient in any way possible; their personal goal FAMILY ENVIRONMENT • family members main goal was to achieve a “home-like interior” similar to how the patient would feel at their own residence • they sought for “peaceful” and “calming” qualities from their environment • the physical environment shall attempt to decrease feelings of “anxiety” and “discomfort” • family wanted a space which was “comfortable” for the patient • family members expressed importance of the patient not feeling “alone” in their room • family members found themselves constantly interrupted in the room but also found that the staff respected their space and conducted themselves in a good manner/disposition • family members found acoustic privacy to be a big issue; sound was not controlled effectively • PATTERNS PHYSICAL • main goal was for staff should provide pain management for the patient’s physical “discomfort” • family expressed importance of having a place to sleep over and be “close to” their loved one • there was an overall need for patients and family members to get some good “sleep and rest” • food and nourishment was an important factor to both patient and family • it was an overall pattern that all users needed some sort of space to “relax” and be away from the “stress”, very important • family members wanted some sort of access to items such as blankets., pillows and places to sleep 4 analysis

11. THEMES PATTERNS KEY POINTS • PATTERNS (continued) EMOTIONAL • main goal emotionally was for guidance and “consolation” from staff • even though it was not always attainable, privacy was a huge issue for most family members and patients • family members sought for help with grief and pain • sometimes they expressed they simply wanted a “shoulder to cry on” • many times, family members just wanted someone to listen to what they had to say or how they felt • they wanted to make the “most of their time” while they are here; felt a shortage of time and importance of its quality SPIRITUAL • main idea was that spiritual moments or activities can provide consolation and peace for the patient • some, but not all, family members expressed care or importance on emotional support • they expressed emotional support as extra aide in the healing process • sometimes it was just a religious icon or monument that could be near the patient; the “presence of” an item • family members wanted some sort of spiritual text they may read for their own consolation • spiritual needs were individually or culturally based • main goal spatially was for the patient to thrive in an “ideal environment” which physically benefits them • family cherished their “space” within the patient room, which usually was not to the desires or caliber they wished/wanted- generally people wanted spaces and moments of solitude or being alone • family members also wanted a space where they can go to when not in the patient’s room, a space “to get away” • there was an overall pattern of views and nature; some sort of plant life or windows • there is an overall need for “quiet spaces” • some expressed the cleanliness or lack there of the patient room or facility • some family members expressed importance of space where they can eat together with their loved one • usually there was a lack of seating for family members to congregate in the patient room SPATIAL • KEY POINTS – FAMILY MEMBERS (in regards to themselves or for the patient) Care, Support, Pain Management, Sleep, Low Noise, Accommodations PHYSICALLY WANTED Comfort, Counseling, No Stress, Subdued Anxiety, Communication EMOTIONALLY WANTED Knowledge, Information, Interaction, A shoulder to cry on, An ear to listen LOOKED FOR Empathy, Respect, Appreciation, Help, Consolation FOUND Little to no Privacy, Acoustical Distractions, Lack of Space EXPERIENCED 4 analysis

12. CONCLUSIONS DESIGN PRINCIPLES RECOMMENDATIONS • CONCLUSIONS This content analysis has assisted in understanding the overall hospice experience from a non-staff member and the physical interactions and environmental affordances or issues which are presented to them. It has given me an insight to how the patient views the world around them and how they are affected by it. It was interesting to understand the relationships between family and staff or patient and staff from the perspective of a family member and not just a staff member. It is valuable that we understand the physical connections and relationships not only between family an staff but family and environment as well. This analysis has allowed us understand what elements of the environment such as furniture options and availability of spaces are lacking or needed for family members to have a better stay at the hospice. This information can help guide us into the programming phase of the hospice program. We can better understand the physical needs all users within the space. We understand, spatially, what elements are needed in order for the users to be content and satisfied. This content analysis has helped shape and guide me as to how a proper analysis should be conducted. This research will be used in future steps of the design process going forward. 5 interpretation

13. CONCLUSIONS DESIGN PRINCIPLES RECOMMENDATIONS • DESIGN PRINCIPLES HOME-LIKE INTERIORS It is imperative for family members and patients alike, that the hospice feels more residential and “home-like”. A home-like” environment may promote sensations of comfort and contentment. This is important because this is a space where family is able to bond with their loved ones. RESTFULNESS – SLEEPING SPACE It is very important that the patient and family members are able to achieve restfulness. Sleep is a crucial component to the healing process physically and emotionally. The patient should feel very comfortable within their bed since this is the primary location where they spend most hours. Also, a space should be provided to family members where they are able to comfortably spend the night. Interruptions should be kept to a minimum if possible and staff should continue to be courteous when entering the patient room at night and the patient or family member is trying to sleep. CONTROL – DISTRACTIONS The spaces should limit all sorts of distractions as possible; acoustical distractions, visual distractions, etc. There should be elements of the interiors which allow different level of acoustical and visual control or affordances. SOLITUDE It is very important that there are spaces which are away from communal rooms which offer levels of privacy and optimal solitude for family members (staff can benefit from these spaces as well). Staff and family alike, need a moment of isolation in which they can be alone with their thoughts and escape from the reality of the situation. This may also tie into spiritual or religious touch points where family and staff can pray or conduct small activities/practices. • RECOMMENDATIONS • The interiors should be warm, cozy and residential instead of cold, sterile and hospital-like • More space and seating for family within patient room • Better sleeping affordances for family member to stay over; access to pillows, clean sheets, a cot or bed • A quiet space, with little to no distractions where family members may find solitude and optimal privacy • A communal space which can be used to “get away” from the patient room and serve as a positive distraction • Acoustical and sound proofing materials to decrease acoustical distractions • Materials which maintain their durability and appearance; a space which supports feelings of cleaniness 5 interpretation

14. Icons and Graphs http://thenounproject.com/ http://www.myseniorcare.com/providers/hospice/fl/miami/vitas-inpatient-hospice-of-university-of-miami-hospital. • Book and Articles References • Langs, R. (1978). The listening process. New York: J. Aronson. • Stewart-Pollack, J. & Menconi, R. (2005). Designing for privacy and related needs. New York: Fairchild. • Online References • National Association of Hospice Fundraisers http://www.nahf.org.uk/Nvivo http://www.qsrinternational.com/products_nvivo.aspx • ViTAS http://www.vitas.com/flhttp://www.vitas.com/fl/miami-fort-lauderdale-hospice/about-us/locations/vitas-inpatient-hospice-unit-at-university-of-miami 6 references