Carole Robinson | University of British Columbia (original) (raw)

Papers by Carole Robinson

Research paper thumbnail of “Just because you’ve got lung cancer, doesn’t mean I will”: Lung cancer, smoking and family dynamics.

Although individuals who are diagnosed with smoking-related disorders are offered smoking cessati... more Although individuals who are diagnosed with smoking-related disorders are offered smoking cessation programs, little attention has been directed toward reducing tobacco use among healthy relatives who smoke. The purpose of this article is to report smoking relatives' responses to a family member's diagnosis of lung disease, their constructions of smoking in this context, and their interaction patterns with the patient. Interviews with 11 family members where there was a diagnosis of lung cancer and 3 family members where there was another serious smoking-related diagnosis were analyzed. Family members used two strategies to support their continued smoking: distancing themselves from the diagnosis and taking the position that smoking cessation needed to be internally motivated by the " right reason " and initiated at the " right time " to anticipate success. The few participants who chose to quit, did so in support of their ill family member. The findings provide direction for intervening with family members who smoke.

Research paper thumbnail of A Motivational, Gender-Sensitive Smoking Cessation Resource for Family Members of Patients 
With Lung Cancer

Oncology nursing forum, 2015

To gather feedback on an innovative gender-sensitive booklet that draws on emotional connections ... more To gather feedback on an innovative gender-sensitive booklet that draws on emotional connections and relationship factors to motivate smoking cessation. . Qualitative, descriptive. . Six provinces in Canada. . 30 family members of patients with lung cancer who were currently smoking or had recently quit. . Parallel booklets for women and men were developed using language and images to emphasize family relationships and gender considerations to motivate smoking cessation. Participants were provided with the women's and men's versions of the resource, and they were asked to review the gender-specific version of the booklet that was relevant to them. Semistructured telephone interviews were conducted, and transcriptions were analyzed for themes. . Three themes were evident in the data, including "new perspectives. A gender-sensitive approach that focuses on relationship factors represents an acceptable way to engage relatives of patients with lung cancer in discussions to...

Research paper thumbnail of Smoking, lung cancer and family dynamics

Research paper thumbnail of It’s not going to Ruin our Relationships-or will it?: Smoking, Lung Cancer and Family Dynamics

Research paper thumbnail of It is not going to ruin our relationships–or will it?: Smoking, lung cancer and family dynamics

Research paper thumbnail of Lung cancer, tobacco and family dynamics

Research paper thumbnail of Advance care planning: re-visioning our ethical approach

The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmières, 2011

This qualitative study explored the applicability and usefulness of a promising advance care plan... more This qualitative study explored the applicability and usefulness of a promising advance care planning (ACP) intervention and examined the ACP process. Nine dyads (patients newly diagnosed with advanced lung cancer and a family member) participated in the ACP intervention, with evaluative interviews at 3 and 6 months after the intervention. All interviews were recorded, transcribed verbatim, and analyzed using constant comparison. The process was found not to be one of preparing a substitute decision-maker to speak for oneself and direct health care at a time when one is incapacitated; rather, the families engaged in a deeply relational process where meaning, values, and preferences were negotiated in conversation. ACP is theoretically rooted in a traditional notion of patient autonomy that is not aligned with the relational process that unfolded in this study. An approach that embraces relational autonomy is more congruent and provides a stronger foundation for meeting the needs of ...

Research paper thumbnail of Nurses' experiences of caring for the older adult in the emergency department: A focused ethnography

International Emergency Nursing, 2014

The purpose of this study was to explore nurses' experience of caring for the older adult within ... more The purpose of this study was to explore nurses' experience of caring for the older adult within the ED. This focused ethnographic study used a combination of semi-structured interviews and non-participant observation. Seven registered nurses participated, detailing their experiences of caring for the older adult in the ED. Data were transcribed verbatim and analyzed thematically. Findings revealed three themes: the culture, which focused on priority setting and throughput of patients, lack of fit between the older adult and the ED, and managing lack of fit. Nurses relied on a default orientation of priority setting, recognizing this put the older adult at risk of substandard care. Lack of fit was accentuated by the need to 'puzzle through' atypical presentations of many older adults. It is concluded that consideration needs to be given on how to mitigate lack of fit and how to support nurses to give the care the older adult requires.

Research paper thumbnail of Nurses' experiences of caring for the older adult in the emergency department: A focused ethnography

International Emergency Nursing, 2014

The purpose of this study was to explore nurses' experience of caring for the older adult within ... more The purpose of this study was to explore nurses' experience of caring for the older adult within the ED. This focused ethnographic study used a combination of semi-structured interviews and non-participant observation. Seven registered nurses participated, detailing their experiences of caring for the older adult in the ED. Data were transcribed verbatim and analyzed thematically. Findings revealed three themes: the culture, which focused on priority setting and throughput of patients, lack of fit between the older adult and the ED, and managing lack of fit. Nurses relied on a default orientation of priority setting, recognizing this put the older adult at risk of substandard care. Lack of fit was accentuated by the need to 'puzzle through' atypical presentations of many older adults. It is concluded that consideration needs to be given on how to mitigate lack of fit and how to support nurses to give the care the older adult requires.

Research paper thumbnail of Program Assessment Framework for a Rural Palliative Supportive Service

Palliative Care: Research and Treatment, 2013

Although there are a number of quality frameworks available for evaluating palliative services, i... more Although there are a number of quality frameworks available for evaluating palliative services, it is necessary to adapt these frameworks to models of care designed for the rural context. The purpose of this paper was to describe the development of a program assessment framework for evaluating a rural palliative supportive service as part of a community-based research project designed to enhance the quality of care for patients and families living with life-limiting chronic illness. A review of key documents from electronic databases and grey literature resulted in the identification of general principles for high-quality palliative care in rural contexts. These principles were then adapted to provide an assessment framework for the evaluation of the rural palliative supportive service. This framework was evaluated and refined using a community-based advisory committee guiding the development of the service. The resulting program assessment framework includes 48 criteria organized under seven themes: embedded within community; palliative care is timely, comprehensive, and continuous; access to palliative care education and experts; effective teamwork and communication; family partnerships; policies and services that support rural capacity and values; and systematic approach for measuring and improving outcomes of care. It is important to identify essential elements for assessing the quality of services designed to improve rural palliative care, taking into account the strengths of rural communities and addressing common challenges. The program assessment framework has potential to increase the likelihood of desired outcomes in palliative care provisions in rural settings and requires further validation.

Research paper thumbnail of Program Assessment Framework for a Rural Palliative Supportive Service

Palliative Care: Research and Treatment, 2013

Although there are a number of quality frameworks available for evaluating palliative services, i... more Although there are a number of quality frameworks available for evaluating palliative services, it is necessary to adapt these frameworks to models of care designed for the rural context. The purpose of this paper was to describe the development of a program assessment framework for evaluating a rural palliative supportive service as part of a community-based research project designed to enhance the quality of care for patients and families living with life-limiting chronic illness. A review of key documents from electronic databases and grey literature resulted in the identification of general principles for high-quality palliative care in rural contexts. These principles were then adapted to provide an assessment framework for the evaluation of the rural palliative supportive service. This framework was evaluated and refined using a community-based advisory committee guiding the development of the service. The resulting program assessment framework includes 48 criteria organized under seven themes: embedded within community; palliative care is timely, comprehensive, and continuous; access to palliative care education and experts; effective teamwork and communication; family partnerships; policies and services that support rural capacity and values; and systematic approach for measuring and improving outcomes of care. It is important to identify essential elements for assessing the quality of services designed to improve rural palliative care, taking into account the strengths of rural communities and addressing common challenges. The program assessment framework has potential to increase the likelihood of desired outcomes in palliative care provisions in rural settings and requires further validation.

Research paper thumbnail of Parenting a Child with Asperger’s Syndrome: A Balancing Act

Journal of Child and Family Studies, 2014

Research paper thumbnail of Parenting a Child with Asperger’s Syndrome: A Balancing Act

Journal of Child and Family Studies, 2014

Research paper thumbnail of Health care relationships: The chronic illness perspective

Research in Nursing & Health, 1988

Research paper thumbnail of Health care relationships: The chronic illness perspective

Research in Nursing & Health, 1988

Research paper thumbnail of Managing Life with a Chronic Condition: The Story of Normalization

Qualitative Health Research, 1993

One way that families and individuals manage living with a chronic condition is to construct and ... more One way that families and individuals manage living with a chronic condition is to construct and live a story of "life as normal." The conceptualization of this process is based on constant comparative analysis of accounts of individuals and family members who are managing chronic conditions. The process begins with construction of the story of life as normal and continues as the story is lived over time. As the story is enacted, persons reauthor their lives. Thus the reciprocal nature of the process becomes evident. Specifically, how individuals and families construct and enact the story is discussed along with the role of health care professionals in the process and associated costs and benefits.

Research paper thumbnail of Managing Life with a Chronic Condition: The Story of Normalization

Qualitative Health Research, 1993

One way that families and individuals manage living with a chronic condition is to construct and ... more One way that families and individuals manage living with a chronic condition is to construct and live a story of "life as normal." The conceptualization of this process is based on constant comparative analysis of accounts of individuals and family members who are managing chronic conditions. The process begins with construction of the story of life as normal and continues as the story is lived over time. As the story is enacted, persons reauthor their lives. Thus the reciprocal nature of the process becomes evident. Specifically, how individuals and families construct and enact the story is discussed along with the role of health care professionals in the process and associated costs and benefits.

Research paper thumbnail of “Our best hope is a cure.” Hope in the context of advance care planning

Palliative and Supportive Care, 2012

Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to liv... more Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to live up to that potential. This qualitative interpretive study was designed to explore the process and outcomes of ACP using the patient-centered Advance Care Planning Interview (PC-ACP) developed by the Respecting Choices® program in Wisconsin. Patients diagnosed with advanced lung cancer and close family members were recruited. Nine family dyads participated in the PC-ACP interview, which was audio-recorded. Follow-up interviews took place 3 and 6 months after the PC-ACP interview and were also recorded. Thematic analysis was conducted on transcribed interviews using constant comparison. Analysis showed that hope was a significant theme in the ACP process and this article reports on that theme. Hope for a cure was one of many hopes that supported quality of life for the participant dyads. Three themes were identified: hope is multifaceted, hope for a cure is well considered, and hope is resilient and persistent. The seeming paradox of hoping for a cure of an incurable cancer did not interfere with the process of ACP. The dyads engaged in explicit discussions of end-of-life scenarios and preferences for care. ACP did not interfere with hope and hope for a cure did not interfere with ACP. Concerns about false hope are called into question. The principle of honoring hope is not necessarily in conflict with the principle of truthful communication. This is clinically significant, as the findings suggest we need not disrupt hope that we think of as "unrealistic" as long as it supports the family to live well. Further, ACP can be successful even in the context of hoping for a cure.

Research paper thumbnail of “Our best hope is a cure.” Hope in the context of advance care planning

Palliative and Supportive Care, 2012

Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to liv... more Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to live up to that potential. This qualitative interpretive study was designed to explore the process and outcomes of ACP using the patient-centered Advance Care Planning Interview (PC-ACP) developed by the Respecting Choices® program in Wisconsin. Patients diagnosed with advanced lung cancer and close family members were recruited. Nine family dyads participated in the PC-ACP interview, which was audio-recorded. Follow-up interviews took place 3 and 6 months after the PC-ACP interview and were also recorded. Thematic analysis was conducted on transcribed interviews using constant comparison. Analysis showed that hope was a significant theme in the ACP process and this article reports on that theme. Hope for a cure was one of many hopes that supported quality of life for the participant dyads. Three themes were identified: hope is multifaceted, hope for a cure is well considered, and hope is resilient and persistent. The seeming paradox of hoping for a cure of an incurable cancer did not interfere with the process of ACP. The dyads engaged in explicit discussions of end-of-life scenarios and preferences for care. ACP did not interfere with hope and hope for a cure did not interfere with ACP. Concerns about false hope are called into question. The principle of honoring hope is not necessarily in conflict with the principle of truthful communication. This is clinically significant, as the findings suggest we need not disrupt hope that we think of as "unrealistic" as long as it supports the family to live well. Further, ACP can be successful even in the context of hoping for a cure.

Research paper thumbnail of Among neighbors: An ethnographic account of responsibilities in rural palliative care

Palliative and Supportive Care, 2014

Building high quality palliative care in rural areas must take into account the cultural dimensio... more Building high quality palliative care in rural areas must take into account the cultural dimensions of the rural context. The purpose of this qualitative study was to conduct an exploration of rural palliative care, with a particular focus on the responsibilities that support good palliative care from rural participants' perspectives. This ethnographic study was conducted in four rural communities in Western Canada between June 2009 and September 2010. Data included 51 days of field work, 95 semistructured interviews, and 74 hours of direct participant observation. Thematic analysis was used to provide a descriptive account of rural palliative care responsibilities. Findings focus on the complex web of responsibilities involving family, healthcare professionals, and administrators. Family practices of responsibility included provision of direct care, managing and coordinating care, and advocacy. Healthcare professional practices of responsibility consisted of interpreting their own competency in relation to palliative care, negotiating their role in relation to that interpretation, and individualizing care through a bureaucratic system. Administrators had three primary responsibilities in relation to palliative care delivery in their community: navigating the politics of palliative care, understanding the culture of the community, and communicating with the community. Findings provide important insights into the complex ways rurality influences understandings of responsibility in palliative care. Families, healthcare providers, and administrators work together in fluid ways to support high quality palliative care in their communities. However, the very fluidity of these responsibilities can also work against high quality care, and are easily disrupted by healthcare changes. Proposed healthcare policy and practice changes, particularly those that originate from outside of the community, should undergo a careful analysis of their potential impact on the longstanding negotiated responsibilities.

Research paper thumbnail of “Just because you’ve got lung cancer, doesn’t mean I will”: Lung cancer, smoking and family dynamics.

Although individuals who are diagnosed with smoking-related disorders are offered smoking cessati... more Although individuals who are diagnosed with smoking-related disorders are offered smoking cessation programs, little attention has been directed toward reducing tobacco use among healthy relatives who smoke. The purpose of this article is to report smoking relatives' responses to a family member's diagnosis of lung disease, their constructions of smoking in this context, and their interaction patterns with the patient. Interviews with 11 family members where there was a diagnosis of lung cancer and 3 family members where there was another serious smoking-related diagnosis were analyzed. Family members used two strategies to support their continued smoking: distancing themselves from the diagnosis and taking the position that smoking cessation needed to be internally motivated by the " right reason " and initiated at the " right time " to anticipate success. The few participants who chose to quit, did so in support of their ill family member. The findings provide direction for intervening with family members who smoke.

Research paper thumbnail of A Motivational, Gender-Sensitive Smoking Cessation Resource for Family Members of Patients 
With Lung Cancer

Oncology nursing forum, 2015

To gather feedback on an innovative gender-sensitive booklet that draws on emotional connections ... more To gather feedback on an innovative gender-sensitive booklet that draws on emotional connections and relationship factors to motivate smoking cessation. . Qualitative, descriptive. . Six provinces in Canada. . 30 family members of patients with lung cancer who were currently smoking or had recently quit. . Parallel booklets for women and men were developed using language and images to emphasize family relationships and gender considerations to motivate smoking cessation. Participants were provided with the women's and men's versions of the resource, and they were asked to review the gender-specific version of the booklet that was relevant to them. Semistructured telephone interviews were conducted, and transcriptions were analyzed for themes. . Three themes were evident in the data, including "new perspectives. A gender-sensitive approach that focuses on relationship factors represents an acceptable way to engage relatives of patients with lung cancer in discussions to...

Research paper thumbnail of Smoking, lung cancer and family dynamics

Research paper thumbnail of It’s not going to Ruin our Relationships-or will it?: Smoking, Lung Cancer and Family Dynamics

Research paper thumbnail of It is not going to ruin our relationships–or will it?: Smoking, lung cancer and family dynamics

Research paper thumbnail of Lung cancer, tobacco and family dynamics

Research paper thumbnail of Advance care planning: re-visioning our ethical approach

The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmières, 2011

This qualitative study explored the applicability and usefulness of a promising advance care plan... more This qualitative study explored the applicability and usefulness of a promising advance care planning (ACP) intervention and examined the ACP process. Nine dyads (patients newly diagnosed with advanced lung cancer and a family member) participated in the ACP intervention, with evaluative interviews at 3 and 6 months after the intervention. All interviews were recorded, transcribed verbatim, and analyzed using constant comparison. The process was found not to be one of preparing a substitute decision-maker to speak for oneself and direct health care at a time when one is incapacitated; rather, the families engaged in a deeply relational process where meaning, values, and preferences were negotiated in conversation. ACP is theoretically rooted in a traditional notion of patient autonomy that is not aligned with the relational process that unfolded in this study. An approach that embraces relational autonomy is more congruent and provides a stronger foundation for meeting the needs of ...

Research paper thumbnail of Nurses' experiences of caring for the older adult in the emergency department: A focused ethnography

International Emergency Nursing, 2014

The purpose of this study was to explore nurses' experience of caring for the older adult within ... more The purpose of this study was to explore nurses' experience of caring for the older adult within the ED. This focused ethnographic study used a combination of semi-structured interviews and non-participant observation. Seven registered nurses participated, detailing their experiences of caring for the older adult in the ED. Data were transcribed verbatim and analyzed thematically. Findings revealed three themes: the culture, which focused on priority setting and throughput of patients, lack of fit between the older adult and the ED, and managing lack of fit. Nurses relied on a default orientation of priority setting, recognizing this put the older adult at risk of substandard care. Lack of fit was accentuated by the need to 'puzzle through' atypical presentations of many older adults. It is concluded that consideration needs to be given on how to mitigate lack of fit and how to support nurses to give the care the older adult requires.

Research paper thumbnail of Nurses' experiences of caring for the older adult in the emergency department: A focused ethnography

International Emergency Nursing, 2014

The purpose of this study was to explore nurses' experience of caring for the older adult within ... more The purpose of this study was to explore nurses' experience of caring for the older adult within the ED. This focused ethnographic study used a combination of semi-structured interviews and non-participant observation. Seven registered nurses participated, detailing their experiences of caring for the older adult in the ED. Data were transcribed verbatim and analyzed thematically. Findings revealed three themes: the culture, which focused on priority setting and throughput of patients, lack of fit between the older adult and the ED, and managing lack of fit. Nurses relied on a default orientation of priority setting, recognizing this put the older adult at risk of substandard care. Lack of fit was accentuated by the need to 'puzzle through' atypical presentations of many older adults. It is concluded that consideration needs to be given on how to mitigate lack of fit and how to support nurses to give the care the older adult requires.

Research paper thumbnail of Program Assessment Framework for a Rural Palliative Supportive Service

Palliative Care: Research and Treatment, 2013

Although there are a number of quality frameworks available for evaluating palliative services, i... more Although there are a number of quality frameworks available for evaluating palliative services, it is necessary to adapt these frameworks to models of care designed for the rural context. The purpose of this paper was to describe the development of a program assessment framework for evaluating a rural palliative supportive service as part of a community-based research project designed to enhance the quality of care for patients and families living with life-limiting chronic illness. A review of key documents from electronic databases and grey literature resulted in the identification of general principles for high-quality palliative care in rural contexts. These principles were then adapted to provide an assessment framework for the evaluation of the rural palliative supportive service. This framework was evaluated and refined using a community-based advisory committee guiding the development of the service. The resulting program assessment framework includes 48 criteria organized under seven themes: embedded within community; palliative care is timely, comprehensive, and continuous; access to palliative care education and experts; effective teamwork and communication; family partnerships; policies and services that support rural capacity and values; and systematic approach for measuring and improving outcomes of care. It is important to identify essential elements for assessing the quality of services designed to improve rural palliative care, taking into account the strengths of rural communities and addressing common challenges. The program assessment framework has potential to increase the likelihood of desired outcomes in palliative care provisions in rural settings and requires further validation.

Research paper thumbnail of Program Assessment Framework for a Rural Palliative Supportive Service

Palliative Care: Research and Treatment, 2013

Although there are a number of quality frameworks available for evaluating palliative services, i... more Although there are a number of quality frameworks available for evaluating palliative services, it is necessary to adapt these frameworks to models of care designed for the rural context. The purpose of this paper was to describe the development of a program assessment framework for evaluating a rural palliative supportive service as part of a community-based research project designed to enhance the quality of care for patients and families living with life-limiting chronic illness. A review of key documents from electronic databases and grey literature resulted in the identification of general principles for high-quality palliative care in rural contexts. These principles were then adapted to provide an assessment framework for the evaluation of the rural palliative supportive service. This framework was evaluated and refined using a community-based advisory committee guiding the development of the service. The resulting program assessment framework includes 48 criteria organized under seven themes: embedded within community; palliative care is timely, comprehensive, and continuous; access to palliative care education and experts; effective teamwork and communication; family partnerships; policies and services that support rural capacity and values; and systematic approach for measuring and improving outcomes of care. It is important to identify essential elements for assessing the quality of services designed to improve rural palliative care, taking into account the strengths of rural communities and addressing common challenges. The program assessment framework has potential to increase the likelihood of desired outcomes in palliative care provisions in rural settings and requires further validation.

Research paper thumbnail of Parenting a Child with Asperger’s Syndrome: A Balancing Act

Journal of Child and Family Studies, 2014

Research paper thumbnail of Parenting a Child with Asperger’s Syndrome: A Balancing Act

Journal of Child and Family Studies, 2014

Research paper thumbnail of Health care relationships: The chronic illness perspective

Research in Nursing & Health, 1988

Research paper thumbnail of Health care relationships: The chronic illness perspective

Research in Nursing & Health, 1988

Research paper thumbnail of Managing Life with a Chronic Condition: The Story of Normalization

Qualitative Health Research, 1993

One way that families and individuals manage living with a chronic condition is to construct and ... more One way that families and individuals manage living with a chronic condition is to construct and live a story of "life as normal." The conceptualization of this process is based on constant comparative analysis of accounts of individuals and family members who are managing chronic conditions. The process begins with construction of the story of life as normal and continues as the story is lived over time. As the story is enacted, persons reauthor their lives. Thus the reciprocal nature of the process becomes evident. Specifically, how individuals and families construct and enact the story is discussed along with the role of health care professionals in the process and associated costs and benefits.

Research paper thumbnail of Managing Life with a Chronic Condition: The Story of Normalization

Qualitative Health Research, 1993

One way that families and individuals manage living with a chronic condition is to construct and ... more One way that families and individuals manage living with a chronic condition is to construct and live a story of "life as normal." The conceptualization of this process is based on constant comparative analysis of accounts of individuals and family members who are managing chronic conditions. The process begins with construction of the story of life as normal and continues as the story is lived over time. As the story is enacted, persons reauthor their lives. Thus the reciprocal nature of the process becomes evident. Specifically, how individuals and families construct and enact the story is discussed along with the role of health care professionals in the process and associated costs and benefits.

Research paper thumbnail of “Our best hope is a cure.” Hope in the context of advance care planning

Palliative and Supportive Care, 2012

Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to liv... more Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to live up to that potential. This qualitative interpretive study was designed to explore the process and outcomes of ACP using the patient-centered Advance Care Planning Interview (PC-ACP) developed by the Respecting Choices® program in Wisconsin. Patients diagnosed with advanced lung cancer and close family members were recruited. Nine family dyads participated in the PC-ACP interview, which was audio-recorded. Follow-up interviews took place 3 and 6 months after the PC-ACP interview and were also recorded. Thematic analysis was conducted on transcribed interviews using constant comparison. Analysis showed that hope was a significant theme in the ACP process and this article reports on that theme. Hope for a cure was one of many hopes that supported quality of life for the participant dyads. Three themes were identified: hope is multifaceted, hope for a cure is well considered, and hope is resilient and persistent. The seeming paradox of hoping for a cure of an incurable cancer did not interfere with the process of ACP. The dyads engaged in explicit discussions of end-of-life scenarios and preferences for care. ACP did not interfere with hope and hope for a cure did not interfere with ACP. Concerns about false hope are called into question. The principle of honoring hope is not necessarily in conflict with the principle of truthful communication. This is clinically significant, as the findings suggest we need not disrupt hope that we think of as "unrealistic" as long as it supports the family to live well. Further, ACP can be successful even in the context of hoping for a cure.

Research paper thumbnail of “Our best hope is a cure.” Hope in the context of advance care planning

Palliative and Supportive Care, 2012

Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to liv... more Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to live up to that potential. This qualitative interpretive study was designed to explore the process and outcomes of ACP using the patient-centered Advance Care Planning Interview (PC-ACP) developed by the Respecting Choices® program in Wisconsin. Patients diagnosed with advanced lung cancer and close family members were recruited. Nine family dyads participated in the PC-ACP interview, which was audio-recorded. Follow-up interviews took place 3 and 6 months after the PC-ACP interview and were also recorded. Thematic analysis was conducted on transcribed interviews using constant comparison. Analysis showed that hope was a significant theme in the ACP process and this article reports on that theme. Hope for a cure was one of many hopes that supported quality of life for the participant dyads. Three themes were identified: hope is multifaceted, hope for a cure is well considered, and hope is resilient and persistent. The seeming paradox of hoping for a cure of an incurable cancer did not interfere with the process of ACP. The dyads engaged in explicit discussions of end-of-life scenarios and preferences for care. ACP did not interfere with hope and hope for a cure did not interfere with ACP. Concerns about false hope are called into question. The principle of honoring hope is not necessarily in conflict with the principle of truthful communication. This is clinically significant, as the findings suggest we need not disrupt hope that we think of as "unrealistic" as long as it supports the family to live well. Further, ACP can be successful even in the context of hoping for a cure.

Research paper thumbnail of Among neighbors: An ethnographic account of responsibilities in rural palliative care

Palliative and Supportive Care, 2014

Building high quality palliative care in rural areas must take into account the cultural dimensio... more Building high quality palliative care in rural areas must take into account the cultural dimensions of the rural context. The purpose of this qualitative study was to conduct an exploration of rural palliative care, with a particular focus on the responsibilities that support good palliative care from rural participants' perspectives. This ethnographic study was conducted in four rural communities in Western Canada between June 2009 and September 2010. Data included 51 days of field work, 95 semistructured interviews, and 74 hours of direct participant observation. Thematic analysis was used to provide a descriptive account of rural palliative care responsibilities. Findings focus on the complex web of responsibilities involving family, healthcare professionals, and administrators. Family practices of responsibility included provision of direct care, managing and coordinating care, and advocacy. Healthcare professional practices of responsibility consisted of interpreting their own competency in relation to palliative care, negotiating their role in relation to that interpretation, and individualizing care through a bureaucratic system. Administrators had three primary responsibilities in relation to palliative care delivery in their community: navigating the politics of palliative care, understanding the culture of the community, and communicating with the community. Findings provide important insights into the complex ways rurality influences understandings of responsibility in palliative care. Families, healthcare providers, and administrators work together in fluid ways to support high quality palliative care in their communities. However, the very fluidity of these responsibilities can also work against high quality care, and are easily disrupted by healthcare changes. Proposed healthcare policy and practice changes, particularly those that originate from outside of the community, should undergo a careful analysis of their potential impact on the longstanding negotiated responsibilities.