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P103 The Importance of Family in End-Of-Life Care
Vol. 52 No. 6 December 2016
Selected Abstracts
Objectives: The occurrence of end-of-life delirium is quite common and can be distressing for patients, family members and care providers. While there is growing evidence that information and support can help to mitigate some of this distress for family members, there is still much to be understood about how care providers perceive and respond to family member needs. This means addressing how care providers engage with emotional complexities and how care providers manage this delicate balance in feeling able to support and address these heightened needs. Methods: A delirium family information leaflet, created in collaboration with a working group of Palliative Care Unit (PCU) nurses, was reviewed by the larger interprofessional PCU team to gain insight into family information and support needs. Five focus groups with 25 staff were conducted, wherein participants were asked to share their experiences of working with delirious patients and their families, what information and support needs were raised by family members and explored leaflet content. Initial qualitative analysis of the transcripts followed an exploratory design and data was analyzed thematically and iteratively. A secondary discourse analysis was conducted and explored in more detail the needs, concerns, and fears that may surround delirium and how these needs were directly (or indirectly) acknowledged. Results: While initial thematic analysis emphasized the importance of information provision and promoted self-care, a deeper discourse analysis reflected care providers’ protective concerns, vulnerabilities and hesitancies in responding to and/or addressing family members’ distress, confusion, shock and fear. Conclusions: It is imperative that care providers are able to recognize and address the delicate balance in meeting multiple concerns and needs that arise for family members during this time. Building competencies and comfort in supporting family members’ emotional experiences is integral in providing strong holistic, patient and family centered care.
P102 Caregiver Coach Service: A Volunteer Service Aimed at Maintaining the Wellbeing of Family Caregivers
S. Robin Cohen1,4, Jamie L. Penner1,4, Monica P. Parmar Calislar1,2,4, Christopher J. MacKinnon1,5, Vasiliki Bitzas2, Maria Cherba, Susan Keats, Anna Feindel3, Suzanne O’Brien3, Bernard Lapointe1,2, Dawn Allen, Kelli Stajduhar6, Naomi Kogan 1 McGill University, Montre al, QC, Canada 2 SMBD Jewish General Hospital, Montre al, QC, Canada
e91
3
Hope and Cope, Montre al, QC, Canada Lady Davis Institute for Medical Research, Montre al, QC, Canada 5 McGill University Health Centre, Montre al, QC, Canada 6 University of Victoria, Victoria, BC, Canada 4
Objectives: Family caregivers (FCGs) often experience decreased wellbeing hile providing care and in bereavement. Volunteers may have a role to play in supporting FCGs, but the literature indicates that they are not trained to focus on FCGs’ own wellbeing. The goal of this study was to implement and formatively evaluate a volunteer service to guide FCGs to maintain their own wellbeing in the patient’s last months and in early bereavement. Methods: Study design was informed by the participatory Fourth Generation Evaluation methodology (Guba and Lincoln 1989). Data were collected from FCGs (n¼21), volunteers (n¼13), their coordinator, and referring clinicians, as well as the service database, via various means, including interviews and reflective notes. Content analysis was conducted for ongoing formative evaluation. Results: The volunteers bolstered the FCGs’ abilities to cope by guiding the FCGs to find resolutions to their problems where possible, providing emotional support and concern for the FCGs’ own wellbeing. For issues where there was no solution, they enabled the FCGs to adopt a different perspective and approach, bringing a new meaning to the situation. Most FCGs reported that the volunteers filled a unique role in their life, as someone with lay knowledge about and sometimes personal experience of their situation who is not a family member or health care provider and as the only person with a primary focus on their own wellbeing. Several reported that the volunteer’s encouragement to take time for themselves and seek help in caregiving, either from other family members or within the community, enabled them to provide care at home longer. Conclusions: The Caregiver Coach Service fills an important service gap for FCGs. A summative evaluation as well as a study to assess the pros and cons of solely focusing on the FCG vs also including patient care are warranted.
P103 The Importance of Family in End-Of-Life Care
Doa’a Kerwat1, Meelad Sayma2, Shiraz Jamshaid3, Dina Saleh3, Folashade Oyewole3, Samad Wahid3, Aaniya Ahmed3 1 Barts and The London School of Medicine and Dentistry, London, United Kingdom
e92
Selected Abstracts
2
Peninsula College of Medicine and Dentistry, London, United Kingdom 3 Imperial College London, London, United Kingdom Objectives: To investigate the role of families in facilitating patient death at home. Methods: Primary qualitative data collection was undertaken to investigate the factors that prevent and enable patients to fulfill their dying wishes in regard to home as a place of death. 33 experts in this field were interviewed, with approval from Imperial College Research Ethics Committee. A thematic analysis of interview transcripts was carried out. Results: The fundamental role played by family members was highlighted as a key theme. This major subtheme within the overarching theme of stakeholders was the role of families. This comprised of their role in the provision of end of life care, their preferences, attitudes and perceived burden; and their influence on patient choice.
Vol. 52 No. 6 December 2016
Method: Sixty-five participants (25 parents and 40 children) were recruited to CLIMBÒ, provided to seven groups from November 2012 to December 2015. 1) Participant feedback was analyzed qualitatively after each course. 2) Twenty-eight of 41 (71%) participating medical staff filled out a 10-item questionnaire about obstacles to dissemination of this program in Japan. Results: 1) Participants reported that attending CLIMBÒ was a good opportunity and useful for both children and their parents. After taking the course, they could share their feelings not only as family members but also as comrades who suffered similar hardships. This program helped children understand what cancer is, and how to cope with their parents’ distress. 2) The top five issues pointed out were: 1. Poor publicity of CLIMBÒ to patients with cancer (86%), 2. Poor recognition of the program by medical colleagues (84%), 3. Time-consuming (79%), 4. Inadequate funding (57%) and 5. No compensation to medical professionals (50%).
Conclusions: The attitude and willingness of family members plays a pivotal role in facilitating patient death at home. These findings highlight the importance of considering that informal carers are key in the end of life care process, thus we must consider their needs, alongside those of the dying patient. However, it is important to acknowledge the qualitative nature of results. As a result, further studies must be conducted to assess the role of families in achieving home death.
Conclusion: CLIMBÒ is very useful for patients with cancer and their families. A publicity campaign for this program is indispensable for further recognition by the general public and the medical community in Japan. Fund raising is also an important issue for efficient dissemination of this program.
Family Issues
Jenny J. Lin1, Cardinale B. Smith1, Shelli Feder2, Nina A. Bickell1, Dena Schulman-Green2 1 Icahn School of Medicine at Mount Sinai, New York, NY, United States 2 Yale University, New Haven, CT, United States
P106 Psychosocial Support Program for Children Who Have Parents with Cancer e Program Significance and Problems for Dissemination in Japan
Miwako Inada1, Kaori Komatsuzaki1, Mariko Kobayashi2, Atsushi Shimizu1, Alan Kawarai Lefor1, Kaichiro Tamba1 1 Jichi Medical University Hospital, Shimotsuke, Tochigi, Japan 2 The Open University of Japan, Chiba, Japan Introduction: With an increased number of patients with cancer who have small children, support of the children is a major issue. Children’s Lives Include Moments of Bravery (CLIMBÒ) is a psychosocial intervention program provided as a part of child support at our hospital. The aim of this study is 1) to analyze participant feedback and 2) to elucidate problems which prevent this program from disseminating more widely in Japan.
P107 Patient and Physician Views About Family Involvement in Goals of Care Conversations
Background: Family views can significantly impact advanced cancer patients’ treatment. Yet, limited research examines patient and physician perspectives about family involvement and influence on goals of care (GoC) conversations for patients with advanced cancer. Methods: We audio-taped semi-structured interviews at academic, community, and municipal hospitals (n¼4) with patients with advanced cancer (n¼40) and their oncologists (n¼21). Three coders independently and then jointly coded transcripts. We analyzed data using interpretive description. Results: Themes among both patients and physicians include the importance of family involvement when patients do not want health information, interdependence of patient and family emotions, patients and
Selected Abstracts
Objectives: The occurrence of end-of-life delirium is quite common and can be distressing for patients, family members and care providers. While there is growing evidence that information and support can help to mitigate some of this distress for family members, there is still much to be understood about how care providers perceive and respond to family member needs. This means addressing how care providers engage with emotional complexities and how care providers manage this delicate balance in feeling able to support and address these heightened needs. Methods: A delirium family information leaflet, created in collaboration with a working group of Palliative Care Unit (PCU) nurses, was reviewed by the larger interprofessional PCU team to gain insight into family information and support needs. Five focus groups with 25 staff were conducted, wherein participants were asked to share their experiences of working with delirious patients and their families, what information and support needs were raised by family members and explored leaflet content. Initial qualitative analysis of the transcripts followed an exploratory design and data was analyzed thematically and iteratively. A secondary discourse analysis was conducted and explored in more detail the needs, concerns, and fears that may surround delirium and how these needs were directly (or indirectly) acknowledged. Results: While initial thematic analysis emphasized the importance of information provision and promoted self-care, a deeper discourse analysis reflected care providers’ protective concerns, vulnerabilities and hesitancies in responding to and/or addressing family members’ distress, confusion, shock and fear. Conclusions: It is imperative that care providers are able to recognize and address the delicate balance in meeting multiple concerns and needs that arise for family members during this time. Building competencies and comfort in supporting family members’ emotional experiences is integral in providing strong holistic, patient and family centered care.
P102 Caregiver Coach Service: A Volunteer Service Aimed at Maintaining the Wellbeing of Family Caregivers
S. Robin Cohen1,4, Jamie L. Penner1,4, Monica P. Parmar Calislar1,2,4, Christopher J. MacKinnon1,5, Vasiliki Bitzas2, Maria Cherba, Susan Keats, Anna Feindel3, Suzanne O’Brien3, Bernard Lapointe1,2, Dawn Allen, Kelli Stajduhar6, Naomi Kogan 1 McGill University, Montre al, QC, Canada 2 SMBD Jewish General Hospital, Montre al, QC, Canada
e91
3
Hope and Cope, Montre al, QC, Canada Lady Davis Institute for Medical Research, Montre al, QC, Canada 5 McGill University Health Centre, Montre al, QC, Canada 6 University of Victoria, Victoria, BC, Canada 4
Objectives: Family caregivers (FCGs) often experience decreased wellbeing hile providing care and in bereavement. Volunteers may have a role to play in supporting FCGs, but the literature indicates that they are not trained to focus on FCGs’ own wellbeing. The goal of this study was to implement and formatively evaluate a volunteer service to guide FCGs to maintain their own wellbeing in the patient’s last months and in early bereavement. Methods: Study design was informed by the participatory Fourth Generation Evaluation methodology (Guba and Lincoln 1989). Data were collected from FCGs (n¼21), volunteers (n¼13), their coordinator, and referring clinicians, as well as the service database, via various means, including interviews and reflective notes. Content analysis was conducted for ongoing formative evaluation. Results: The volunteers bolstered the FCGs’ abilities to cope by guiding the FCGs to find resolutions to their problems where possible, providing emotional support and concern for the FCGs’ own wellbeing. For issues where there was no solution, they enabled the FCGs to adopt a different perspective and approach, bringing a new meaning to the situation. Most FCGs reported that the volunteers filled a unique role in their life, as someone with lay knowledge about and sometimes personal experience of their situation who is not a family member or health care provider and as the only person with a primary focus on their own wellbeing. Several reported that the volunteer’s encouragement to take time for themselves and seek help in caregiving, either from other family members or within the community, enabled them to provide care at home longer. Conclusions: The Caregiver Coach Service fills an important service gap for FCGs. A summative evaluation as well as a study to assess the pros and cons of solely focusing on the FCG vs also including patient care are warranted.
P103 The Importance of Family in End-Of-Life Care
Doa’a Kerwat1, Meelad Sayma2, Shiraz Jamshaid3, Dina Saleh3, Folashade Oyewole3, Samad Wahid3, Aaniya Ahmed3 1 Barts and The London School of Medicine and Dentistry, London, United Kingdom
e92
Selected Abstracts
2
Peninsula College of Medicine and Dentistry, London, United Kingdom 3 Imperial College London, London, United Kingdom Objectives: To investigate the role of families in facilitating patient death at home. Methods: Primary qualitative data collection was undertaken to investigate the factors that prevent and enable patients to fulfill their dying wishes in regard to home as a place of death. 33 experts in this field were interviewed, with approval from Imperial College Research Ethics Committee. A thematic analysis of interview transcripts was carried out. Results: The fundamental role played by family members was highlighted as a key theme. This major subtheme within the overarching theme of stakeholders was the role of families. This comprised of their role in the provision of end of life care, their preferences, attitudes and perceived burden; and their influence on patient choice.
Vol. 52 No. 6 December 2016
Method: Sixty-five participants (25 parents and 40 children) were recruited to CLIMBÒ, provided to seven groups from November 2012 to December 2015. 1) Participant feedback was analyzed qualitatively after each course. 2) Twenty-eight of 41 (71%) participating medical staff filled out a 10-item questionnaire about obstacles to dissemination of this program in Japan. Results: 1) Participants reported that attending CLIMBÒ was a good opportunity and useful for both children and their parents. After taking the course, they could share their feelings not only as family members but also as comrades who suffered similar hardships. This program helped children understand what cancer is, and how to cope with their parents’ distress. 2) The top five issues pointed out were: 1. Poor publicity of CLIMBÒ to patients with cancer (86%), 2. Poor recognition of the program by medical colleagues (84%), 3. Time-consuming (79%), 4. Inadequate funding (57%) and 5. No compensation to medical professionals (50%).
Conclusions: The attitude and willingness of family members plays a pivotal role in facilitating patient death at home. These findings highlight the importance of considering that informal carers are key in the end of life care process, thus we must consider their needs, alongside those of the dying patient. However, it is important to acknowledge the qualitative nature of results. As a result, further studies must be conducted to assess the role of families in achieving home death.
Conclusion: CLIMBÒ is very useful for patients with cancer and their families. A publicity campaign for this program is indispensable for further recognition by the general public and the medical community in Japan. Fund raising is also an important issue for efficient dissemination of this program.
Family Issues
Jenny J. Lin1, Cardinale B. Smith1, Shelli Feder2, Nina A. Bickell1, Dena Schulman-Green2 1 Icahn School of Medicine at Mount Sinai, New York, NY, United States 2 Yale University, New Haven, CT, United States
P106 Psychosocial Support Program for Children Who Have Parents with Cancer e Program Significance and Problems for Dissemination in Japan
Miwako Inada1, Kaori Komatsuzaki1, Mariko Kobayashi2, Atsushi Shimizu1, Alan Kawarai Lefor1, Kaichiro Tamba1 1 Jichi Medical University Hospital, Shimotsuke, Tochigi, Japan 2 The Open University of Japan, Chiba, Japan Introduction: With an increased number of patients with cancer who have small children, support of the children is a major issue. Children’s Lives Include Moments of Bravery (CLIMBÒ) is a psychosocial intervention program provided as a part of child support at our hospital. The aim of this study is 1) to analyze participant feedback and 2) to elucidate problems which prevent this program from disseminating more widely in Japan.
P107 Patient and Physician Views About Family Involvement in Goals of Care Conversations
Background: Family views can significantly impact advanced cancer patients’ treatment. Yet, limited research examines patient and physician perspectives about family involvement and influence on goals of care (GoC) conversations for patients with advanced cancer. Methods: We audio-taped semi-structured interviews at academic, community, and municipal hospitals (n¼4) with patients with advanced cancer (n¼40) and their oncologists (n¼21). Three coders independently and then jointly coded transcripts. We analyzed data using interpretive description. Results: Themes among both patients and physicians include the importance of family involvement when patients do not want health information, interdependence of patient and family emotions, patients and