Tom Bootsma - Academia.edu (original) (raw)

Papers by Tom Bootsma

Supportive Care in Cancer, Jan 12, 2024

Journal of cancer survivorship, Apr 4, 2024

Purpose Due to the increase in both cancer incidence and overall survival rates, more adolescents... more Purpose Due to the increase in both cancer incidence and overall survival rates, more adolescents and young adults (AYAs) have to live with the effects that their cancer diagnosis and following treatments have on their bodies. This qualitative phenomenological study aimed to gain more insight into the way AYAs experience these effects and how they respond to these effects. Methods Semi-structured interviews with a sample of 11 AYAs with an age range of 25-41 years at the time of the interview, who were diagnosed with different types of cancer, were conducted. Participants were recruited via social media and patient associations until data saturation was reached. A topic guide with open-ended questions about lived experiences was used. Interpretative phenomenological analysis (IPA) was performed to analyse the transcripts. Results We identified six Group Experiential Themes based on different ways AYAs experience their bodies: (1) selfconscious body, (2) vulnerable body, (3) adapting to the body, (4) uncontrollable body, (5) remembering the body and (6) shared bodies. Conclusion This study offers in-depth insight into the bodily experiences of AYAs after cancer and how they respond to these changes from a phenomenological point of view. Implications for Cancer Survivors This knowledge could be beneficial to provide more guidance for AYAs during and after their illness, by focussing on personalised psychological (after)care.

KWALON, 2020

Embodied experiences of patients with severe chronic fatigue after cancer. An interpretive phenom... more Embodied experiences of patients with severe chronic fatigue after cancer. An interpretive phenomenological study This article presents a phenomenological study on embodied experiences based on interviews with 25 patients with severe chronic cancer-related fatigue (CCRF). Insight into the patient’s perspective can help to facilitate personalized treatment in CCRF. Theoretically resorting to philosophical phenomenology, we explored embodied experiences of living with CCRF. Using interpretative phenomenological analysis, we identified four superordinate themes: (1) Worn out; (2) Diminishment of one’s ‘I can’; (3) Socially invisible objectification of the body; and (4) Restoring one’s ‘I can’. For clinical practice, these results suggest that focusing on the body and restoring one’s ‘I can’ could be helpful during treatment of CCRF. Future research should focus on measuring individual patterns of CCRF symptoms in order to personalize treatment.

Psycho-oncology, Feb 24, 2020

Objective: Male breast cancer (MBC) is rare. Information about breast cancer is usually designed ... more Objective: Male breast cancer (MBC) is rare. Information about breast cancer is usually designed for female patients. However, in males this disease and some side effects differ from its female counterpart. Therefore, there is a need for male-specific information. The aim was to assess unmet information needs of (a) MBC patients and (b) health professionals. Methods: Dutch MBC patients (diagnosed between 2011 and 2016 in 21 hospitals), patient advocates and partners were invited to participate in focus groups and/or complete a paper-based questionnaire on information needs. In addition, an online questionnaire on information needs was sent to health professionals involved in MBC patient care. Results: In three focus groups with MBC patients (N = 12) and partners (N = 2) the following unmet information themes were identified: patients' experiences/photographs, symptoms, (delay of) diagnosis, treatments, side effects, follow-up, psychological impact/coping, genetics and family, research and raising awareness. 77 of 107 MBC patients (72%) completed the questionnaire: most patients lacked information about acute (65%) or late (56%) side effects, particularly sexual side effects. Among health professionals, 110 of 139 (79%) had searched for MBC-related information, specifically: patient information, anti-hormonal therapy, genetic testing, research, and psychosocial issues. Conclusions: Unmet information needs in MBC patients and health professionals were identified. Specific information on MBC should be developed to improve timely diagnosis, quality of life, treatment, and survival. A targeted website is an ideal tool to meet these needs. Therefore, we integrated these results into a user-centered design to develop an informative website, www. mannenmetborstkanker.nl.

Psychology & Health, Sep 2, 2021

Objective: This article presents a phenomenological study on the embodied experiences of patients... more Objective: This article presents a phenomenological study on the embodied experiences of patients with Chronic Cancer-Related Fatigue (CCRF), aiming to better understand this complex phenomenon. Design: Data collection consisted of individual interviews with 25 participants who suffered from severe CCRF for at least three months after cancer treatment was finished. Main outcome measures: Against the theoretical background of philosophical phenomenology, we explored embodied experiences, incorporated temporal and spatial aspects of living with CCRF. We applied interpretative phenomenological analysis (IPA) to analyze the transcripts of the interviews. Results: Using IPA, we identified four themes on how chronic fatigue is experienced post-cancer: (1) Worn out; (2) Diminishment of one's 'I can'; (3) Invisibility; and (4) Regaining one's 'I can'. Conclusion: For clinical practice, these results imply that professionals could focus more on the role of the body and limitations of one's 'I can' when treating CCRF. By studying these embodied CCRF experiences in individual patients, future research could help personalize and optimize treatment.

Journal for person-oriented research, Aug 26, 2021

Approximately 25% of cancer patients suffer from chronic cancer-related fatigue (CCRF), which is ... more Approximately 25% of cancer patients suffer from chronic cancer-related fatigue (CCRF), which is a complex, multifactorial condition. While there are evidence-based interventions, it remains unclear what treatment works best for the individual patient. Psychological network models can offer a schematic representation of interrelations among fatigue and protective and perpetuating factors for the individual patient. We explored whether feedback based on these individual fatigue networks can help personalize psychological care for CCRF. A 34-year old woman with CCRF was referred to our mental healthcare institute for psycho-oncology. During the waitlist period, she filled out an experience sampling app for 101 days, including five daily assessments of fatigue, pain, mood, activity and fatigue coping. The interplay between items was visualized in network graphs at the moment-level and day-level, which were discussed with the patient. For example, acceptance of fatigue in the past three hours was associated with less hopelessness and less fatigue in the following moment. At the day-level, acceptance was also being associated with less fatigue, less hopelessness, a better mood, and more motivation to do things. The patient recognized these patterns and explained how unexpected waves of fatigue can make her feel hopeless. This started a dialogue on how cultivating acceptance could potentially help her handle the fatigue. The patient would discuss this with her therapist. Feedback based on individual fatigue networks can provide direct insight into how one copes with CCRF and subsequently offer directions for treatment. Further research is needed in order to implement this in clinical practice.

Supportive Care in Cancer, May 6, 2021

Purpose The growing group of patients who suffer from chronic cancer-related fatigue (CCRF) after... more Purpose The growing group of patients who suffer from chronic cancer-related fatigue (CCRF) after cancer have helpful and less helpful ways of responding to this long-lasting and disruptive problem. This qualitative study aimed to gain insight in essential elements of how patients respond to CCRF, with a focus on helpful responses to facilitate adaptation. Methods We conducted semi-structured interviews with a purposive sample of 25 participants who experienced severe CCRF for at least 3 months. Participants were recruited via media, patient associations, meetings, and health professionals until data saturation was attained. We used a topic guide with open-ended questions about lived experiences. Interpretative phenomenological analysis (IPA) was used for analysis of the transcripts. Results We identified five interrelated themes of how patients respond to CCRF: (1) discovering physical and emotional boundaries; (2) communicating support needs; (3) reorganizing and planning activities and rest; (4) letting go of one's habitual identity; and (5) recognizing and accepting CCRF. Conclusion This study highlights the development of new habits and positive beliefs in the face of CCRF and the importance of (social) support in this process. This experiential knowledge on helpful responses can be used to inform patients and their significant others and improve self-efficacy. Health professionals could use these insights to improve recognition of CCRF and personalize treatment.

Journal of Behavioral Medicine, Aug 22, 2019

Receiving a cancer diagnosis has a major impact on patients' lives. One of the most prevalent lon... more Receiving a cancer diagnosis has a major impact on patients' lives. One of the most prevalent long-term sideeffects of cancer and its treatment is fatigue. Patients who suffer from severe fatigue also often suffer from symptoms of depression and/or anxiety (Donovan et al., 2013; Hofman et al., 2007; Zhu et al., 2017). In addition, depression and anxiety often co-occur in cancer patients (Mitchell et al., 2011). Multiple studies have demonstrated high correlations among these three problem areas in cancer patients (Brown & Kroenke, 2009). Agasi-Idenburg et al. (2017) demonstrated that fatigue, depression and anxiety form a symptom cluster: a set of multiple co-occurring symptoms that are strongly interrelated (Miaskowski et al., 2017). Compared with a single symptom, the occurrence of Electronic supplementary material The online version of this article (

Internet interventions, Dec 1, 2022

Journal for Person-Oriented Research

Approximately 25% of cancer patients suffer from chronic cancer-related fatigue (CCRF), which is ... more Approximately 25% of cancer patients suffer from chronic cancer-related fatigue (CCRF), which is a complex, multifactorial condition. While there are evidence-based interventions, it remains unclear what treatment works best for the individual patient. Psychological network models can offer a schematic representation of interrelations among fatigue and protective and perpetuating factors for the individual patient. We explored whether feedback based on these individual fatigue networks can help personalize psychological care for CCRF. A 34-year old woman with CCRF was referred to our mental healthcare institute for psycho-oncology. During the waitlist period, she filled out an experience sampling app for 101 days, including five daily assessments of fatigue, pain, mood, activity and fatigue coping. The interplay between items was visualized in network graphs at the moment-level and day-level, which were discussed with the patient. For example, acceptance of fatigue in the past three...

Supportive Care in Cancer

Purpose The growing group of patients who suffer from chronic cancer-related fatigue (CCRF) after... more Purpose The growing group of patients who suffer from chronic cancer-related fatigue (CCRF) after cancer have helpful and less helpful ways of responding to this long-lasting and disruptive problem. This qualitative study aimed to gain insight in essential elements of how patients respond to CCRF, with a focus on helpful responses to facilitate adaptation. Methods We conducted semi-structured interviews with a purposive sample of 25 participants who experienced severe CCRF for at least 3 months. Participants were recruited via media, patient associations, meetings, and health professionals until data saturation was attained. We used a topic guide with open-ended questions about lived experiences. Interpretative phenomenological analysis (IPA) was used for analysis of the transcripts. Results We identified five interrelated themes of how patients respond to CCRF: (1) discovering physical and emotional boundaries; (2) communicating support needs; (3) reorganizing and planning activiti...

Psychology & Health

Objective: This article presents a phenomenological study on the embodied experiences of patients... more Objective: This article presents a phenomenological study on the embodied experiences of patients with Chronic Cancer-Related Fatigue (CCRF), aiming to better understand this complex phenomenon. Design: Data collection consisted of individual interviews with 25 participants who suffered from severe CCRF for at least three months after cancer treatment was finished. Main outcome measures: Against the theoretical background of philosophical phenomenology, we explored embodied experiences, incorporated temporal and spatial aspects of living with CCRF. We applied interpretative phenomenological analysis (IPA) to analyze the transcripts of the interviews. Results: Using IPA, we identified four themes on how chronic fatigue is experienced post-cancer: (1) Worn out; (2) Diminishment of one's 'I can'; (3) Invisibility; and (4) Regaining one's 'I can'. Conclusion: For clinical practice, these results imply that professionals could focus more on the role of the body and limitations of one's 'I can' when treating CCRF. By studying these embodied CCRF experiences in individual patients, future research could help personalize and optimize treatment.

Journal of Behavioral Medicine, Aug 22, 2019

General rights Copyright and moral rights for the publications made accessible in the public port... more General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights.-Users may download and print one copy of any publication from the public portal for the purpose of private study or research-You may not further distribute the material or use it for any profit-making activity or commercial gain-You may freely distribute the URL identifying the publication in the public portal Take down policy If you believe that this document breaches copyright, please contact us providing details, and we will remove access to the work immediately and investigate your claim.

Psycho-Oncology

Objective: Male breast cancer (MBC) is rare. Information about breast cancer is usually designed ... more Objective: Male breast cancer (MBC) is rare. Information about breast cancer is usually designed for female patients. However, in males this disease and some side effects differ from its female counterpart. Therefore, there is a need for male-specific information. The aim was to assess unmet information needs of (a) MBC patients and (b) health professionals. Methods: Dutch MBC patients (diagnosed between 2011 and 2016 in 21 hospitals), patient advocates and partners were invited to participate in focus groups and/or complete a paper-based questionnaire on information needs. In addition, an online questionnaire on information needs was sent to health professionals involved in MBC patient care. Results: In three focus groups with MBC patients (N = 12) and partners (N = 2) the following unmet information themes were identified: patients' experiences/photographs, symptoms, (delay of) diagnosis, treatments, side effects, follow-up, psychological impact/coping, genetics and family, research and raising awareness. 77 of 107 MBC patients (72%) completed the questionnaire: most patients lacked information about acute (65%) or late (56%) side effects, particularly sexual side effects. Among health professionals, 110 of 139 (79%) had searched for MBC-related information, specifically: patient information, anti-hormonal therapy, genetic testing, research, and psychosocial issues. Conclusions: Unmet information needs in MBC patients and health professionals were identified. Specific information on MBC should be developed to improve timely diagnosis, quality of life, treatment, and survival. A targeted website is an ideal tool to meet these needs. Therefore, we integrated these results into a user-centered design to develop an informative website, www. mannenmetborstkanker.nl.

Psycho-Oncology

Objective: One of the most prevalent and disrupting symptoms experienced by cancer patients is ch... more Objective: One of the most prevalent and disrupting symptoms experienced by cancer patients is chronic cancer-related fatigue (CCRF). A better understanding of the chronic nature of CCRF can provide valuable insights for theory and practice. The purpose of this meta-ethnography was to derive an overarching interpretative narrative on patients' experiences and responses to CCRF. Methods: We conducted a comprehensive systematic literature search in five databases (05-03-2018). In addition, papers from reference lists were retrieved. Two researchers independently screened the papers for eligibility and appraised quality (CASP-criteria). We followed the seven phases of meta-ethnography to extract, translate, and synthesise first-order constructs (ie, patients' views) and second-order constructs (ie, authors' views) from the selected studies into third-order constructs (ie, new interpretations). Results: Of the 1178 collected articles, 16 articles were included. Through synthesis, a new figure of six interrelated third-order constructs was developed: (1) embodied experience entails the dominating presence of the body; (2) (mis)recognition includes lack of recognition of CCRF by patients, relatives, and health providers; (3) small horizon describes a resultant narrowed world; (4) role change encompasses adopting other life roles; (5) loss of self refers to the impact on one's identity; and (6) regaining one's footing describes the struggle against CCRF, adaptation to CCRF and finally acceptance of a "new normal with CCRF." Conclusion: A new embodiment figure of CCRF with social (eg, (mis)recognition), spatial (eg, small horizon) and temporal dimensions (eg, regaining one's footing) was developed. This figure can help professionals to recognise CCRF, inform patients, and personalise treatment.

Supportive Care in Cancer, Jan 12, 2024

Journal of cancer survivorship, Apr 4, 2024

Purpose Due to the increase in both cancer incidence and overall survival rates, more adolescents... more Purpose Due to the increase in both cancer incidence and overall survival rates, more adolescents and young adults (AYAs) have to live with the effects that their cancer diagnosis and following treatments have on their bodies. This qualitative phenomenological study aimed to gain more insight into the way AYAs experience these effects and how they respond to these effects. Methods Semi-structured interviews with a sample of 11 AYAs with an age range of 25-41 years at the time of the interview, who were diagnosed with different types of cancer, were conducted. Participants were recruited via social media and patient associations until data saturation was reached. A topic guide with open-ended questions about lived experiences was used. Interpretative phenomenological analysis (IPA) was performed to analyse the transcripts. Results We identified six Group Experiential Themes based on different ways AYAs experience their bodies: (1) selfconscious body, (2) vulnerable body, (3) adapting to the body, (4) uncontrollable body, (5) remembering the body and (6) shared bodies. Conclusion This study offers in-depth insight into the bodily experiences of AYAs after cancer and how they respond to these changes from a phenomenological point of view. Implications for Cancer Survivors This knowledge could be beneficial to provide more guidance for AYAs during and after their illness, by focussing on personalised psychological (after)care.

KWALON, 2020

Embodied experiences of patients with severe chronic fatigue after cancer. An interpretive phenom... more Embodied experiences of patients with severe chronic fatigue after cancer. An interpretive phenomenological study This article presents a phenomenological study on embodied experiences based on interviews with 25 patients with severe chronic cancer-related fatigue (CCRF). Insight into the patient’s perspective can help to facilitate personalized treatment in CCRF. Theoretically resorting to philosophical phenomenology, we explored embodied experiences of living with CCRF. Using interpretative phenomenological analysis, we identified four superordinate themes: (1) Worn out; (2) Diminishment of one’s ‘I can’; (3) Socially invisible objectification of the body; and (4) Restoring one’s ‘I can’. For clinical practice, these results suggest that focusing on the body and restoring one’s ‘I can’ could be helpful during treatment of CCRF. Future research should focus on measuring individual patterns of CCRF symptoms in order to personalize treatment.

Psycho-oncology, Feb 24, 2020

Objective: Male breast cancer (MBC) is rare. Information about breast cancer is usually designed ... more Objective: Male breast cancer (MBC) is rare. Information about breast cancer is usually designed for female patients. However, in males this disease and some side effects differ from its female counterpart. Therefore, there is a need for male-specific information. The aim was to assess unmet information needs of (a) MBC patients and (b) health professionals. Methods: Dutch MBC patients (diagnosed between 2011 and 2016 in 21 hospitals), patient advocates and partners were invited to participate in focus groups and/or complete a paper-based questionnaire on information needs. In addition, an online questionnaire on information needs was sent to health professionals involved in MBC patient care. Results: In three focus groups with MBC patients (N = 12) and partners (N = 2) the following unmet information themes were identified: patients' experiences/photographs, symptoms, (delay of) diagnosis, treatments, side effects, follow-up, psychological impact/coping, genetics and family, research and raising awareness. 77 of 107 MBC patients (72%) completed the questionnaire: most patients lacked information about acute (65%) or late (56%) side effects, particularly sexual side effects. Among health professionals, 110 of 139 (79%) had searched for MBC-related information, specifically: patient information, anti-hormonal therapy, genetic testing, research, and psychosocial issues. Conclusions: Unmet information needs in MBC patients and health professionals were identified. Specific information on MBC should be developed to improve timely diagnosis, quality of life, treatment, and survival. A targeted website is an ideal tool to meet these needs. Therefore, we integrated these results into a user-centered design to develop an informative website, www. mannenmetborstkanker.nl.

Psychology & Health, Sep 2, 2021

Objective: This article presents a phenomenological study on the embodied experiences of patients... more Objective: This article presents a phenomenological study on the embodied experiences of patients with Chronic Cancer-Related Fatigue (CCRF), aiming to better understand this complex phenomenon. Design: Data collection consisted of individual interviews with 25 participants who suffered from severe CCRF for at least three months after cancer treatment was finished. Main outcome measures: Against the theoretical background of philosophical phenomenology, we explored embodied experiences, incorporated temporal and spatial aspects of living with CCRF. We applied interpretative phenomenological analysis (IPA) to analyze the transcripts of the interviews. Results: Using IPA, we identified four themes on how chronic fatigue is experienced post-cancer: (1) Worn out; (2) Diminishment of one's 'I can'; (3) Invisibility; and (4) Regaining one's 'I can'. Conclusion: For clinical practice, these results imply that professionals could focus more on the role of the body and limitations of one's 'I can' when treating CCRF. By studying these embodied CCRF experiences in individual patients, future research could help personalize and optimize treatment.

Journal for person-oriented research, Aug 26, 2021

Approximately 25% of cancer patients suffer from chronic cancer-related fatigue (CCRF), which is ... more Approximately 25% of cancer patients suffer from chronic cancer-related fatigue (CCRF), which is a complex, multifactorial condition. While there are evidence-based interventions, it remains unclear what treatment works best for the individual patient. Psychological network models can offer a schematic representation of interrelations among fatigue and protective and perpetuating factors for the individual patient. We explored whether feedback based on these individual fatigue networks can help personalize psychological care for CCRF. A 34-year old woman with CCRF was referred to our mental healthcare institute for psycho-oncology. During the waitlist period, she filled out an experience sampling app for 101 days, including five daily assessments of fatigue, pain, mood, activity and fatigue coping. The interplay between items was visualized in network graphs at the moment-level and day-level, which were discussed with the patient. For example, acceptance of fatigue in the past three hours was associated with less hopelessness and less fatigue in the following moment. At the day-level, acceptance was also being associated with less fatigue, less hopelessness, a better mood, and more motivation to do things. The patient recognized these patterns and explained how unexpected waves of fatigue can make her feel hopeless. This started a dialogue on how cultivating acceptance could potentially help her handle the fatigue. The patient would discuss this with her therapist. Feedback based on individual fatigue networks can provide direct insight into how one copes with CCRF and subsequently offer directions for treatment. Further research is needed in order to implement this in clinical practice.

Supportive Care in Cancer, May 6, 2021

Purpose The growing group of patients who suffer from chronic cancer-related fatigue (CCRF) after... more Purpose The growing group of patients who suffer from chronic cancer-related fatigue (CCRF) after cancer have helpful and less helpful ways of responding to this long-lasting and disruptive problem. This qualitative study aimed to gain insight in essential elements of how patients respond to CCRF, with a focus on helpful responses to facilitate adaptation. Methods We conducted semi-structured interviews with a purposive sample of 25 participants who experienced severe CCRF for at least 3 months. Participants were recruited via media, patient associations, meetings, and health professionals until data saturation was attained. We used a topic guide with open-ended questions about lived experiences. Interpretative phenomenological analysis (IPA) was used for analysis of the transcripts. Results We identified five interrelated themes of how patients respond to CCRF: (1) discovering physical and emotional boundaries; (2) communicating support needs; (3) reorganizing and planning activities and rest; (4) letting go of one's habitual identity; and (5) recognizing and accepting CCRF. Conclusion This study highlights the development of new habits and positive beliefs in the face of CCRF and the importance of (social) support in this process. This experiential knowledge on helpful responses can be used to inform patients and their significant others and improve self-efficacy. Health professionals could use these insights to improve recognition of CCRF and personalize treatment.

Journal of Behavioral Medicine, Aug 22, 2019

Receiving a cancer diagnosis has a major impact on patients' lives. One of the most prevalent lon... more Receiving a cancer diagnosis has a major impact on patients' lives. One of the most prevalent long-term sideeffects of cancer and its treatment is fatigue. Patients who suffer from severe fatigue also often suffer from symptoms of depression and/or anxiety (Donovan et al., 2013; Hofman et al., 2007; Zhu et al., 2017). In addition, depression and anxiety often co-occur in cancer patients (Mitchell et al., 2011). Multiple studies have demonstrated high correlations among these three problem areas in cancer patients (Brown & Kroenke, 2009). Agasi-Idenburg et al. (2017) demonstrated that fatigue, depression and anxiety form a symptom cluster: a set of multiple co-occurring symptoms that are strongly interrelated (Miaskowski et al., 2017). Compared with a single symptom, the occurrence of Electronic supplementary material The online version of this article (

Internet interventions, Dec 1, 2022

Journal for Person-Oriented Research

Approximately 25% of cancer patients suffer from chronic cancer-related fatigue (CCRF), which is ... more Approximately 25% of cancer patients suffer from chronic cancer-related fatigue (CCRF), which is a complex, multifactorial condition. While there are evidence-based interventions, it remains unclear what treatment works best for the individual patient. Psychological network models can offer a schematic representation of interrelations among fatigue and protective and perpetuating factors for the individual patient. We explored whether feedback based on these individual fatigue networks can help personalize psychological care for CCRF. A 34-year old woman with CCRF was referred to our mental healthcare institute for psycho-oncology. During the waitlist period, she filled out an experience sampling app for 101 days, including five daily assessments of fatigue, pain, mood, activity and fatigue coping. The interplay between items was visualized in network graphs at the moment-level and day-level, which were discussed with the patient. For example, acceptance of fatigue in the past three...

Supportive Care in Cancer

Purpose The growing group of patients who suffer from chronic cancer-related fatigue (CCRF) after... more Purpose The growing group of patients who suffer from chronic cancer-related fatigue (CCRF) after cancer have helpful and less helpful ways of responding to this long-lasting and disruptive problem. This qualitative study aimed to gain insight in essential elements of how patients respond to CCRF, with a focus on helpful responses to facilitate adaptation. Methods We conducted semi-structured interviews with a purposive sample of 25 participants who experienced severe CCRF for at least 3 months. Participants were recruited via media, patient associations, meetings, and health professionals until data saturation was attained. We used a topic guide with open-ended questions about lived experiences. Interpretative phenomenological analysis (IPA) was used for analysis of the transcripts. Results We identified five interrelated themes of how patients respond to CCRF: (1) discovering physical and emotional boundaries; (2) communicating support needs; (3) reorganizing and planning activiti...

Psychology & Health

Objective: This article presents a phenomenological study on the embodied experiences of patients... more Objective: This article presents a phenomenological study on the embodied experiences of patients with Chronic Cancer-Related Fatigue (CCRF), aiming to better understand this complex phenomenon. Design: Data collection consisted of individual interviews with 25 participants who suffered from severe CCRF for at least three months after cancer treatment was finished. Main outcome measures: Against the theoretical background of philosophical phenomenology, we explored embodied experiences, incorporated temporal and spatial aspects of living with CCRF. We applied interpretative phenomenological analysis (IPA) to analyze the transcripts of the interviews. Results: Using IPA, we identified four themes on how chronic fatigue is experienced post-cancer: (1) Worn out; (2) Diminishment of one's 'I can'; (3) Invisibility; and (4) Regaining one's 'I can'. Conclusion: For clinical practice, these results imply that professionals could focus more on the role of the body and limitations of one's 'I can' when treating CCRF. By studying these embodied CCRF experiences in individual patients, future research could help personalize and optimize treatment.

Journal of Behavioral Medicine, Aug 22, 2019

General rights Copyright and moral rights for the publications made accessible in the public port... more General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights.-Users may download and print one copy of any publication from the public portal for the purpose of private study or research-You may not further distribute the material or use it for any profit-making activity or commercial gain-You may freely distribute the URL identifying the publication in the public portal Take down policy If you believe that this document breaches copyright, please contact us providing details, and we will remove access to the work immediately and investigate your claim.

Psycho-Oncology

Objective: Male breast cancer (MBC) is rare. Information about breast cancer is usually designed ... more Objective: Male breast cancer (MBC) is rare. Information about breast cancer is usually designed for female patients. However, in males this disease and some side effects differ from its female counterpart. Therefore, there is a need for male-specific information. The aim was to assess unmet information needs of (a) MBC patients and (b) health professionals. Methods: Dutch MBC patients (diagnosed between 2011 and 2016 in 21 hospitals), patient advocates and partners were invited to participate in focus groups and/or complete a paper-based questionnaire on information needs. In addition, an online questionnaire on information needs was sent to health professionals involved in MBC patient care. Results: In three focus groups with MBC patients (N = 12) and partners (N = 2) the following unmet information themes were identified: patients' experiences/photographs, symptoms, (delay of) diagnosis, treatments, side effects, follow-up, psychological impact/coping, genetics and family, research and raising awareness. 77 of 107 MBC patients (72%) completed the questionnaire: most patients lacked information about acute (65%) or late (56%) side effects, particularly sexual side effects. Among health professionals, 110 of 139 (79%) had searched for MBC-related information, specifically: patient information, anti-hormonal therapy, genetic testing, research, and psychosocial issues. Conclusions: Unmet information needs in MBC patients and health professionals were identified. Specific information on MBC should be developed to improve timely diagnosis, quality of life, treatment, and survival. A targeted website is an ideal tool to meet these needs. Therefore, we integrated these results into a user-centered design to develop an informative website, www. mannenmetborstkanker.nl.

Psycho-Oncology

Objective: One of the most prevalent and disrupting symptoms experienced by cancer patients is ch... more Objective: One of the most prevalent and disrupting symptoms experienced by cancer patients is chronic cancer-related fatigue (CCRF). A better understanding of the chronic nature of CCRF can provide valuable insights for theory and practice. The purpose of this meta-ethnography was to derive an overarching interpretative narrative on patients' experiences and responses to CCRF. Methods: We conducted a comprehensive systematic literature search in five databases (05-03-2018). In addition, papers from reference lists were retrieved. Two researchers independently screened the papers for eligibility and appraised quality (CASP-criteria). We followed the seven phases of meta-ethnography to extract, translate, and synthesise first-order constructs (ie, patients' views) and second-order constructs (ie, authors' views) from the selected studies into third-order constructs (ie, new interpretations). Results: Of the 1178 collected articles, 16 articles were included. Through synthesis, a new figure of six interrelated third-order constructs was developed: (1) embodied experience entails the dominating presence of the body; (2) (mis)recognition includes lack of recognition of CCRF by patients, relatives, and health providers; (3) small horizon describes a resultant narrowed world; (4) role change encompasses adopting other life roles; (5) loss of self refers to the impact on one's identity; and (6) regaining one's footing describes the struggle against CCRF, adaptation to CCRF and finally acceptance of a "new normal with CCRF." Conclusion: A new embodiment figure of CCRF with social (eg, (mis)recognition), spatial (eg, small horizon) and temporal dimensions (eg, regaining one's footing) was developed. This figure can help professionals to recognise CCRF, inform patients, and personalise treatment.