Abstract:The study findings illustrate the importance of addressing patients' emotional and psychological needs, and the significance of providing support for those with myeloma.
“…Living with and beyond cancer is an experience that disrupts implicit assumptions about life and forces people to reconstruct their perspectives on self and future . The disruption of living with and beyond cancer has been associated with both “relinquishing control” and “taking charge,” and while living with and beyond cancer is associated with loss and altered life, included studies also report positive changed attitudes and views of life after a cancer diagnosis . The thematic analysis of the 73 included studies of conceptualisations of living with and beyond cancer yielded three interlinked common themes on how people make sense of their cancer experience: Adversity (realising cancer), Restoration (readjusting life with cancer) and Compatibility (reconciling cancer), resulting in the overarching ARC framework.…”
Section: Resultsmentioning
confidence: 99%
“…Included studies further highlight the adversity experienced because of healthcare. Some studies describe a “silent” health care system that provides limited time with healthcare professionals . Others highlight the feeling of struggling and a loss of control due to the lack of participants' involvement in treatment planning: Just people bossing you around and telling me what to do.…”
Section: Resultsmentioning
confidence: 99%
“…For example, participants spoke about managing the challenges of “whispers in public” and about a desire to be able to appraise illness and talk about cancer openly: People are not able to talk about it … it's this big monster you are carrying. ( Kelly and Dowling45(p40))Appraising illness and values in life were also identified as influencing the ability to readjust. Boehmke and Dickerson found that those who approached treatment as a transient experience to be handled in the short‐term were more able to move on with their lives.…”
Section: Resultsmentioning
confidence: 99%
“…People are not able to talk about it … it's this big monster you are carrying. ( Kelly and Dowling45(p40))…”
Objective
The concept of living with and beyond cancer is now emerging in policy and literature. Rather than viewing this notion simply as a linear timeline, developing an agreed understanding of the lived experience of people affected by cancer will aid the development of person‐centred models of care.
Methods
A systematic review was conducted. The review question was “What does the term ‘living with and beyond cancer’ mean to people affected by cancer?” The protocol for the review was preregistered in the PROSPERO database (PROSPERO CRD42017059860). All included studies were qualitative, so narrative synthesis was used to integrate descriptions and definitions of living with and beyond cancer into an empirically based conceptual framework.
Results
Out of 2345 papers that were identified and 180 that were reviewed, a total of 73 papers were included. The synthesis yielded three interlinked themes: Adversity (realising cancer), Restoration (readjusting life with cancer), and Compatibility (reconciling cancer), resulting in the ARC framework.
Conclusions
Three themes describe the experience of living with and beyond cancer: adversity, restoration, and compatibility. The ARC framework provides an empirically informed grounding for future research and practice in supportive cancer care for this population.
“…Living with and beyond cancer is an experience that disrupts implicit assumptions about life and forces people to reconstruct their perspectives on self and future . The disruption of living with and beyond cancer has been associated with both “relinquishing control” and “taking charge,” and while living with and beyond cancer is associated with loss and altered life, included studies also report positive changed attitudes and views of life after a cancer diagnosis . The thematic analysis of the 73 included studies of conceptualisations of living with and beyond cancer yielded three interlinked common themes on how people make sense of their cancer experience: Adversity (realising cancer), Restoration (readjusting life with cancer) and Compatibility (reconciling cancer), resulting in the overarching ARC framework.…”
Section: Resultsmentioning
confidence: 99%
“…Included studies further highlight the adversity experienced because of healthcare. Some studies describe a “silent” health care system that provides limited time with healthcare professionals . Others highlight the feeling of struggling and a loss of control due to the lack of participants' involvement in treatment planning: Just people bossing you around and telling me what to do.…”
Section: Resultsmentioning
confidence: 99%
“…For example, participants spoke about managing the challenges of “whispers in public” and about a desire to be able to appraise illness and talk about cancer openly: People are not able to talk about it … it's this big monster you are carrying. ( Kelly and Dowling45(p40))Appraising illness and values in life were also identified as influencing the ability to readjust. Boehmke and Dickerson found that those who approached treatment as a transient experience to be handled in the short‐term were more able to move on with their lives.…”
Section: Resultsmentioning
confidence: 99%
“…People are not able to talk about it … it's this big monster you are carrying. ( Kelly and Dowling45(p40))…”
Objective
The concept of living with and beyond cancer is now emerging in policy and literature. Rather than viewing this notion simply as a linear timeline, developing an agreed understanding of the lived experience of people affected by cancer will aid the development of person‐centred models of care.
Methods
A systematic review was conducted. The review question was “What does the term ‘living with and beyond cancer’ mean to people affected by cancer?” The protocol for the review was preregistered in the PROSPERO database (PROSPERO CRD42017059860). All included studies were qualitative, so narrative synthesis was used to integrate descriptions and definitions of living with and beyond cancer into an empirically based conceptual framework.
Results
Out of 2345 papers that were identified and 180 that were reviewed, a total of 73 papers were included. The synthesis yielded three interlinked themes: Adversity (realising cancer), Restoration (readjusting life with cancer), and Compatibility (reconciling cancer), resulting in the ARC framework.
Conclusions
Three themes describe the experience of living with and beyond cancer: adversity, restoration, and compatibility. The ARC framework provides an empirically informed grounding for future research and practice in supportive cancer care for this population.
“…Relatively little attention has been paid to patients’ experiences of the disease in the published literature – still less so in the context of RRMM. Qualitative studies, using various methodologies, have outlined how living with uncertainty, symptom burden and quality of life concerns all impact on patients’ perceived body image, role function and social relations [4, 9, 11, 12]. A qualitative paper by Coon and Coleman (2007) reported on MM patients’ experiences of fatigue and their beliefs regarding exercise, but did not address lived experiences of the disease in a comprehensive way [13].…”
BackgroundMultiple myeloma is a haematological malignancy characterized by significant morbidity and mortality. This study sought to develop an in-depth understanding of patients’ lived experiences of relapsed or refractory multiple myeloma (RRMM) and its treatment, and to identify which features of treatment were most important to them.MethodsQualitative interviews and focus groups (FGs) were conducted with 32 people living with RRMM across Canada. In Phase 1, interviews focused on participants’ accounts of their experiences with the disease and its treatment and laid the groundwork for the FGs (Phase 2). The FGs developed a deeper understanding of patients’ treatment priorities. Interview and FG transcripts were coded for emergent themes and patterns.ResultsThe interviews identified important side effects that had significant impacts on patients’ lives, including physical, cognitive, and psychological/emotional side effects. Participants also identified specific treatment features (attributes) that were important to them. These were compiled into a list and used in the FGs to understand patients’ priorities. Higher prioritized attributes were: life expectancy, physical and cognitive side effects, and financial impact. Mode of administration, treatment intervals, psychological side effects, and sleep/mood effects were identified as lower priorities.ConclusionsRRMM and its treatments impact importantly on patients’ quality-of-life across a range of domains. Patients prioritized treatment features that could enhance life expectancy, minimize side effects and offset financial burdens.Implications for cancer survivorsA clear articulation of patient priorities can contribute to efforts to design treatment with patients’ concerns in mind, thereby promoting a more patient-centered approach to care.
ObjectiveMultiple myeloma (MM) and myelodysplastic syndrome (MDS) are treatable but incurable conditions that can substantially impact the daily lives of people living with these conditions and their carers. We sought to understand the experience of people living with and carers affected by these conditions in Tasmania, a regional area of Australia.MethodsExploratory qualitative study. People living with MM or MDS or their carers in Southern Tasmania were recruited by a haematology nurse and invited to participate in focus groups. Data collection was by groups held online and face‐to‐face in 2022. Thematic analysis was used.ResultsTen groups were held with 48 participants (n = 23 with MM, n = 9 with MDS, n = 16 carers). Key themes arising from focus groups with people living with MM/MDS were (1) Relationships and Support; (2) Positive Attitude; (3) Perception of Condition; and (4) Symptoms and Comorbidities. Some people with MM/MDS had to take on a caring role for their carer due to carer illness. Key themes arising from carer focus groups included (1) Supportive Relationships; (2) Accommodating Change; and (3) Own Needs. Not all carers viewed their caring role as burdensome.ConclusionFuture work should consider what supports are required for patients acting as carers, and carer burden should not be assumed.
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