Interdisciplinary Team Role Clarification within Hospice Care

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1 Interdisciplinary Team Role Clarification within Hospice Care Antionette D. Washington, MSW Department of Social Work, Tulane University SOWK 9206: APP Research Ethics Dr. Fredrick Buttell, LCSW, PhD September 21, 2023

2 1. Study aim, background, and design The primary objective of this study is to examine and gain an understanding of the intricacies surrounding hospice care in the United States. Specifically, it aims to investigate the duties and contributions of various multidisciplinary team members in relation to the welfare of patients and their families in the face of terminal situations. The objective is to emphasize the significance of every member of the team, comprising social workers, nurses, chaplains, certified nurse's aides, and volunteers, in the provision of all-encompassing care for individuals and families coping with terminal illnesses (Morris et al., 2017). The objective of this study is to clarify the distinct challenges and capabilities associated with each function, emphasizing the significance of effective collaboration and communication among members of the multidisciplinary team. In order to achieve this objective, we employ a qualitative research methodology that permits a comprehensive exploration of the perspectives, responsibilities, and experiences of hospice team members (Downe-Wamboldt and Ellerton, 1985). Qualitative methodologies, such as focus group discussions and interviews, will be employed to obtain comprehensive and intricate viewpoints firsthand from hospice care providers. A comprehensive thematic analysis will be conducted on the data in order to identify recurring patterns, themes, and significant connections within the narratives of the participants. Our research is motivated by the following inquiry: "In what ways do the different constituents of the hospice interdisciplinary team contribute to the overall welfare of terminally ill patients and their families?" The collected data will be of utmost importance in providing a comprehensive understanding of the responsibilities, challenges, and impact of each team member's efforts on the overall standard of hospice care. Our objective is to provide substantial

3 insights that will impact and enhance the practice of hospice care, ultimately benefiting patients, families, and the healthcare professionals involved in this critical aspect of medical care. 2. Subject Population The subject population of this research consists of hospice care professionals employed in the United States of America. Eligible candidates include social workers, nurses, chaplains, licensed nurse's assistants, and volunteers who are actively engaged in hospice care. Since individuals of all ages make significant contributions to the multidisciplinary hospice team, there are no age restrictions for participation. To ensure seamless comprehension and communication, participants must possess a high level of English proficiency. The rationale for choosing this particular cohort of participants is their active involvement in the provision of palliative care. These experts possess unique viewpoints regarding the challenges, successes, and complexities associated with providing end-of-life care. The objective of this research is to provide crucial insights that can enhance the overall effectiveness of palliative care through a better comprehension of the patients' perspectives. Parental consent or minor sanction is not necessary for the research as it exclusively involves adults. Nevertheless, in consideration of the potentially vulnerable nature of the population due to the emotionally charged aspects of their occupation, the research team will implement ethical measures to safeguard the welfare of the participants. Prospective participants will be contacted through a variety of channels during the recruitment procedure. Aerial posters, including the research's objective, methodology, and contact details, shall be distributed to pertinent professional organizations, palliative facilities, and healthcare

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4 facilities. In addition, potential volunteers will be contacted through correspondence by the research team, making use of pre-existing connections within the healthcare community. To ensure a diverse sample of participants, the research team will also utilize social media platforms, including professional groups on LinkedIn where pertinent individuals frequently engage in discussions. In order to promote transparency, every recruiting resource—posters, emails, and social media posts—will be appended to the application. Ensuring the preservation of participants' privacy and confidentiality throughout the recruitment process, the research staff will provide comprehensive explanations of the study's objectives to all individuals prior to their consent to partake. 3. Procedure a) Participant recruitment (one week): The research will commence with the distribution of recruitment materials, including flyers and emails, to potential participants affiliated with healthcare facilities, hospice centers, and professional organizations. Additionally, social media platforms, specifically LinkedIn communities, will be utilized. The total amount of time that participants dedicate to this phase is minimal, consisting of a few minutes dedicated to reviewing research materials. b) Informed Consent and Screening (one week): Detailed research information will be provided to participants who express interest, and they will be required to provide informed consent. A rapid assessment will be implemented throughout the screening procedures in order to validate that candidates meet the criteria for inclusion. The total time investment made by participants during this segment is approximately 30 minutes. c) Data Collection (four weeks): In-depth interviews and focus group discussions will be conducted with participants. These sessions shall be scheduled according to the

5 participants' convenience, thereby affording increased flexibility in terms of participation. The duration of each interview and focus group session will range from sixty to ninety minutes. The total amount of time devoted by participants to this phase is approximately 1.5 to 2 hours. d) Data Analysis (six weeks): Uncovering patterns and themes within the narratives, the data will be subjected to a thematic analysis. Approximately six weeks will be required to complete this procedure in order to ensure a thorough and exhaustive examination. e) Storage and Dissemination of Results (Continuous): The results of the study will be securely stored in electronic files that are password-protected and accessible solely to the research team. Through academic publications, conferences, and possibly community engagement programs, the findings will be shared. Time and place of the research: a) Interviews and focus groups: These sessions will be conducted at a participant-friendly location, such as a neutral site or their place of employment. Sessions shall be arranged in accordance with the availability of the participants, potentially fitting within regular business hours or at times that are convenient for them. b) Data Analysis: This procedure will be conducted in a secure and confidential environment within the researcher's institution. c) In the course of the permission process, participants will be duly informed if audio recordings are deemed necessary. Without exception, these recordings shall be safeguarded and utilized solely for the purpose of transcription. d) Research Activity Occurring During Class Time (If Relevant): In the event that a research activity takes place during class time, students will be granted the opportunity to

6 compensate for any missed classwork. Those who choose not to participate will be provided with alternative opportunities to earn additional credit, thereby ensuring flexibility and fairness. 4. Risks There are hazards associated with participating in this study, the majority of which are psychological and emotional in nature. Participants may feel apprehensive or distressed when discussing their hospice care responsibilities, recounting personal experiences, or contemplating challenging aspects of their métier. Another concern is that the identities of the participants will be associated with their comments, which would violate their privacy. Risk Mitigation: The following risk mitigation measures will be implemented: a) Confidentiality Protection: In order to safeguard the privacy of the participants, they will be assigned pseudonyms or code names during the entirety of the data collection process. To maintain confidentiality, personal identifiers shall remain distinct from the data. The electronic files, which contain all data, will be password-protected and accessible solely to the research team. b) Informed Consent: Comprehensive information regarding the objectives of the study, potential risks, and the voluntary withdrawal option will be provided to all participants without imposing any additional penalties. The authorization form shall furnish a comprehensive exposition of the measures implemented to ensure privacy and confidentiality.

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7 c) In the event that participants perceive specific inquiries as offensive or delicate, they will be provided with the opportunity to abstain from providing a response. The participants will be duly apprised that their decision to disregard specific inquiries will not have any bearing on their involvement in the research or the outcomes of the study. d) Flexible Scheduling: Diligent consideration will be given to the work schedules and personal obligations of participants when organizing interviews and focus group sessions. In order to mitigate irritation and establish a cheerful atmosphere that promotes engaged involvement. e) Safeguarding Privacy in Focus Groups: Participants will be duly informed of the imperative nature of maintaining confidentiality during the entirety of the discourse, encompassing pre-, during-, and post-session periods. A brief statement pledging a commitment to refrain from publicly disclosing group processes might be required of them. Confidentiality of data: a) Data Storage: It is imperative that all study materials, such as interview guides, permission forms, and secured containers, are securely stored in electronic files that require password protection. b) Data Retention: For the duration of the study, personally identifiable information will be retained. After erasing or destroying the data, all identities must be removed and the information must be safeguarded for a specified period of time. c) Securing storing audio and video recordings in a closed cabinet for a duration of one year subsequent to the study. Subsequent to this period, recordings will be expunged or

8 removed. For future reference, transcripts that have had identifying information removed may be retained. Future Applications of Data: Participants will be informed on the consent form that the researcher may retain anonymized data for subsequent research endeavours that align with the primary objective of the study. This ensures transparency regarding the ultimate destination of the data and aligns with ethical considerations. 5. Benefits It is vital to clarify that individuals' involvement in this study will not result in any immediate advantages. The study's primary goal is to provide information and insights regarding the responsibilities of hospice care team members, so leading to a better understanding of end-of-life care practices. While there are no guarantees that individual participants would benefit, it is hoped that talks about their experiences in hospice care will provide them with a reflective opportunity, perhaps leading to a greater knowledge of their responsibilities and contributions. This study's findings may promote professional growth, increase self-awareness, and improve communication skills among members of the multidisciplinary hospice team. It is critical to recognize that these projected advantages are conditional and dependent on the results of the study. The particular advantages to participants are unknown until the research is finished, data is examined, and conclusions are shared. The major goal of this study is to expand collective knowledge and perhaps influence changes in hospice care methods, which will benefit society as a whole.

9 It is critical to underline that money for participation cannot be regarded an advantage of participating in the study. Without offering immediate personal rewards, the study's ethical conduct guarantees that participants are fully informed about the nature of their engagement and the possible social implications of the research. 6. Remuneration There will be no compensation for taking part in this research project. Participants are urged to participate in the research if they are interested in contributing to the knowledge of hospice care techniques. This study's ethical conduct promotes openness and guarantees that participants are motivated by a genuine interest in the research subject rather than monetary incentives. Participants will receive no monetary rewards, gift vouchers, or other forms of compensation. The research is based on the selfless contributions of people in the hospice care sector who are eager to share their experiences in order to further knowledge in the larger society. During the recruiting and consent procedure, participants will be clearly informed about the lack of payment, stressing the voluntary and non-commercial character of their participation in the study. 7. Costs The individuals will incur no expenditures as a result of their participation in this research project. Participants will incur no charges as a result of their participation in the research, including transportation, parking, or any other fees. The study team is dedicated to making the participation procedure as easy and simple as possible for all those interested. This commitment is consistent with the ethical objectives of eliminating obstacles to participation and fostering the voluntary character of research engagement.

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10 8. Alternatives The primary option for potential participants in this study is to decline to participate. Individuals are under no obligation to participate in the research, and their option to abstain will have no negative implications. The voluntary character of involvement is stressed in order for people to make informed decisions based on their own preferences and degrees of comfort. Because the research includes talks and reflections about hospice care experiences, individuals may drop out if they believe the issues presented are too sensitive or personal. The research team appreciates the potentially sensitive nature of the subject matter and supports participants' autonomy in selecting whether or not to participate in the study. During the recruiting and informed consent procedures, the options are explicitly given, enabling participants to make educated choices regarding their participation in the study. 9. Consent process and documentation This study's consent process is a thorough and continuous approach that starts with participant recruiting and continues throughout their participation in the study. Before agreeing to participate, the major objective is to ensure that participants completely grasp the study purpose, methods, possible risks, and benefits. The permission procedure also stresses the nature of voluntary engagement, enabling participants to make informed choices regarding their participation in the research. Key Consent Process Elements:

11 a) Recruiting: During the recruiting process, potential volunteers would be given clear and complete information about the study. This information will include the study's objective, protocols, possible hazards, projected benefits, and the fact that participation is optional. b) Informed Consent Form: Each participant will be given an official Informed Consent Form (ICF) that has been authorized by the Institutional Review Board (IRB). The ICF will present a thorough review of the study, ensuring that participants have all of the information they need to make an educated choice. c) Verbal Consent for Telephone Surveys: When conducting telephone surveys, verbal consent may be acquired. The script used to acquire verbal permission will be submitted for approval to the IRB. d) continued Consent: Any changes in methods, risks, or other relevant factors will be conveyed to participants during the study, and their continued consent will be confirmed. This guarantees that participants are kept fully informed and eager to participate in the research. Consent Documentation: a) Signed permission Form: For research requiring written permission, participants will sign the authorized ICF to confirm their willingness to participate. This will not happen until the researcher gets an official letter of permission from the IRB. b) Waiver of Written Consent: The IRB may issue a waiver of written consent in specific situations, particularly where the availability of a written permission form poses a serious danger to the participant's career, life, or reputation. In such circumstances, the IRB will carefully review and approve alternate consent methods. Consent Document Retention:

12 The researcher will keep all signed permission forms, whether physical or electronic, for at least three years after the study is completed. The time of retention may be prolonged if discipline- specific requirements and ethical criteria are met. The researcher is dedicated to adhering to these retention standards in order to maintain the study process's openness and accountability. 10. Qualifications of the investigators Dr. Emily Thompson is the principal investigator. The Principal Investigator (PI) for this study, Dr. Emily Thompson, has a Ph.D. in Psychology from Stanford University. Dr. Thompson, who has ten years of experience in behavioral psychology, has showed proficiency in cognitive processes and has previously performed research on stress management in hospice care. Dr. Thompson also has qualifications in qualitative research techniques, which add to the study's effectiveness. Dr. James Rodriguez is a co-investigator / sub-investigator. Dr. James Rodriguez is one of the Co-Investigators and/or Sub-Investigators for this study, if applicable. With a Ph.D. in Sociology and a focus on healthcare inequities, Dr. Rodriguez adds vital insight to the project. His past work in community health initiatives is relevant to the study objectives. Sarah Johnson and Michael Chang are the student investigators. Qualifications for student investigators engaging in this project include appropriate academic accomplishments, employment experience, volunteer activities, or research experience. Sarah Johnson and Michael Chang have completed Advanced Qualitative Research Methods courses and have worked on projects examining end-of-life care perspectives. Their academic interests

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13 and personal experiences, such as volunteering at a local hospice, add to their understanding of the study issues. Prof. Dr. Elizabeth Adams is the faculty advisor. Prof. Dr. Elizabeth Adams, the Faculty Advisor for the student investigator(s), is an Associate Professor at Tulane University. Dr. Adams has a Ph.D. in Social Work and has worked as a researcher in the area for 15 years. The advisor's experience, direction, and mentoring are critical to the student investigators, ensuring that the study adheres to ethical norms and intellectual rigor. The investigators' aggregate credentials, which include academic accomplishments, research experience, and relevant life qualifications, add to the research's legitimacy and the study's effective implementation.

14 References Cloyes, K. G., Berry, P. H., Reblin, M., Clayton, M., & Ellington, L. (2012). Exploring communication patterns among hospice nurses and family caregivers: A content analysis of in-home speech interactions. Journal of Hospice & Palliative Nursing , 14 (6), 426-437. Downe-Wamboldt, B., & Ellerton, M. L. (1985). A study of the role of hospice volunteers. The Hospice Journal , 1 (4), 17-31. Harris, M. D., & Satterly, L. R. (1998). The chaplain as a member of the hospice team. Home Healthcare Now , 16 (9), 591-593. Lai, D., Cloyes, K. G., Clayton, M. F., Doyon, K., Reblin, M., Beck, A. C., & Ellington, L. (2018). We’re the eyes and the ears, but we don’t have a voice: perspectives of hospice aides. Journal of hospice and palliative nursing: JHPN: the official journal of the Hospice and Palliative Nurses Association , 20 (1), 47. Moore, A. R., Bastian, R. G., & Apenteng, B. A. (2016). Communication within hospice interdisciplinary teams: A narrative review. American Journal of Hospice and Palliative Medicine® , 33 (10), 996-1012. Morris, S. M., Payne, S., Ockenden, N., & Hill, M. (2017). Hospice volunteers: bridging the gap to the community?. Health & social care in the community , 25 (6), 1704-1713. Reese, D. J. (2011). Interdisciplinary perceptions of the social work role in hospice: building upon the classic Kulys and Davis study. Journal of social work in end-of-life & palliative care , 7 (4), 383-406.

15 Williams, M. L., Wright, M., Cobb, M., & Shiels, C. (2004). A prospective study of the roles, responsibilities and stresses of chaplains working within a hospice. Palliative Medicine , 18 (7), 638-645. Williams, M. L., Wright, M., Cobb, M., & Shiels, C. (2004). A prospective study of the roles, responsibilities and stresses of chaplains working within a hospice. Palliative Medicine , 18 (7), 638-645.

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Interdisciplinary Team Role Clarification within Hospice Care

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