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Papers by Eike Adams
Adams, E You get on a rollercoaster where you can't get off": Treatment decision-making and 'choi... more Adams, E You get on a rollercoaster where you can't get off": Treatment decision-making and 'choice' in the context of infertility after breast cancer. Adams, E (2007) "You get on a rollercoaster where you can't get off": Treatment decisionmaking and 'choice' in the context of infertility after breast cancer. Feminism & Psychology, 17 (3). pp. 330-335.
Introduction This thesis comprises two chapters. Chapter I is a meta-ethnography of 14 qualitativ... more Introduction This thesis comprises two chapters. Chapter I is a meta-ethnography of 14 qualitative papers on couples' experiences of breast cancer published between 1955 and 2014. It provides a critical review and model of adaptation processes that couples engage in to make sense of the experience of being diagnosed with breast cancer. It outlines how constructions of 'cancer' and 'the couple' are linked to these processes. Chapter II is a longitudinal qualitative study addressing two gaps identified in Chapter I: experiences 1) of younger couples (where the woman is diagnosed under the age of 50) and 2) over time. Four couples participated in two separate interviews, approximately six months apart. 16 interviews were analysed using Interpretative Phenomenological Analysis (IPA). Results focused on change over time in three dimensions with a bearing on couples' adaptation: 1) changes in external circumstances as couples moved along the cancer trajectory; 2) changes in the meaning given to 'cancer'; and 3) changes in the way the couples related to each other. Conclusion: Adaptation to cancer is a relational process that changes over time. Partners need to be more fully integrated into clinical care. Metaphors and meaning-making are linked to couples' adaptation and could be explored in further depth to develop tailored interventions. Overview This thesis was submitted in partial fulfilment of the requirements of the degree of Doctor in Clinical Psychology at the University of Birmingham. It comprises two volumes. Volume I consists of the research component of the degree, Volume II of the clinical component. Volume I is concerned with couples' experiences of breast cancer. It contains three chapters: a literature review, a research paper, and a public dissemination document. The literature review is a meta-ethnography of qualitative literature discussing the experiences of couples when the woman is diagnosed with early stage breast cancer. It provides a critical review as well as explanatory model of the adaptation processes that couples engage in to make sense of the experience of being diagnosed with breast cancer. The research paper provides a qualitative longitudinal analysis of young couples' experiences of early breast cancer, addressing some of the gaps in literature that the meta-ethnography has identified; as well as providing further evidence for the adaptation model it suggested. The public dissemination document provides a brief summary of the first and second chapters. It is written in a more accessible way, free of scientific jargon, to provide an overview of the work for non-specialist audiences. Volume II contains five Clinical Practice Reports (CPR), which were written to evidence clinical practice development over the three years of the Clinical Psychology training course. CPR I is a psychological case formulation of a 78-year old woman with agoraphobia and
European journal of cancer care, 2015
As more patients survive cancer for longer term, the long-term and late effects of treatments bec... more As more patients survive cancer for longer term, the long-term and late effects of treatments become increasingly important issues for cancer survivors and providing information to enable survivors to recognise and manage them becomes an increasingly pressing challenge for health care professionals. The aim of this study was to explore the experiences of cancer survivors regarding information given on potential long-term and late effects of pelvic radiotherapy. Semi-structured interviews were conducted with 28 cancer survivors who had had radiotherapy to the pelvic area for a range of cancers 1-11 years previously. Participants were recruited using maximum variation sampling from a larger questionnaire survey of patients treated at one hospital. Interviews were recorded, transcribed and analysed using Framework. Participants recognised the value of information to reassure and to inform action but also its potentially undesirable effects to frighten or raise anxieties about future pr...
Evidence Based Midwifery
Background. Freebirthing or unassisted birth is the active choice made by a woman to birth withou... more Background. Freebirthing or unassisted birth is the active choice made by a woman to birth without a trained professional present, even where there is access to maternity provision. Aim. To integrate the findings of the current literature on the phenomenon of freebirthing, asking the question: ‘Why do some women choose to freebirth?’ Design. A metasynthesis was carried out based upon Noblit and Hare’s (1988) meta-ethnography. Searches were carried out in March 2013, updated in March 2014 using 15 key databases. Inclusion criteria was applied: primary qualitative work, in English, focusing upon women who had freebirthed intentionally. A quality appraisal was carried out. This paper reports the findings from international studies, as there were no studies based on a UK population. Findings and key conclusions. Four studies were found that incorporated data collected from 272 women. The studies identified were based in the US (n=3) and in Australia (n=1). Four key themes were generated...
Community practitioner : the journal of the Community Practitioners' & Health Visitors' Association, 2010
Semi-structured interviewing is an important tool for gathering data in qualitative research. Thi... more Semi-structured interviewing is an important tool for gathering data in qualitative research. This paper explores some of the joys and challenges associated with research interviewing. It discusses some of the basic skills required to do interviewing well, some of the difficulties associated with interviewing on a practical and emotional level, and how to address them. Being a good interviewer in a research context means to be aware of the responsibility for the participants' wellbeing as well as one's own. Good listening skills and emotional control are among the most crucial skills to develop. This paper summarises some of the skills needed to remain or become a professional, empathetic and ethical interviewer in the context of community practice. If some basic guidelines are followed and combined with practice, the craft of interviewing can become an art.
Tobacco control, 2010
To explore social and behavioural impacts of English smoke-free legislation (SFL) in different et... more To explore social and behavioural impacts of English smoke-free legislation (SFL) in different ethnic groups. A longitudinal, qualitative panel study of smokers using in-depth interviews conducted before and after introduction of SFL. A purposive sample of 32 smokers selected from three ethnic groups in deprived London neighbourhoods with approximately equal numbers of younger and older, male and female respondents. SFL has had positive impacts with half smoking less and three quitting. Although there were no apparent differences in smoking and quitting behaviours between groups, there were notable differences in the social impacts of SFL. The greatest negative impacts were in smokers over 60 years, potentially increasing their social isolation, and on young Somali women whose smoking was driven more underground. In contrast, most other young adult smokers felt relatively unaffected by SFL, describing unexpected social benefits. Although there was high compliance, reports of illegal...
BMJ Supportive & Palliative Care, 2011
AbstractIntroduction and aimsThere are an estimated 2 million cancer survivors in the UK today, w... more AbstractIntroduction and aimsThere are an estimated 2 million cancer survivors in the UK today, with earlier diagnosis and improved treatments leading to an increasing number of long-term survivors. Partners and/or close family members are often a key source of support to the patient, and yet they themselves may experience significant levels of distress and have unmet needs. The main aim
BMJ Supportive & Palliative Care, 2011
AbstractIntroduction and aimsThe role of primary care in the provision of cancer care is poorly d... more AbstractIntroduction and aimsThe role of primary care in the provision of cancer care is poorly defined. Practices in are offered a financial incentive to conduct a review with new patients within 6 months of diagnosis, but the extent to which these reviews occur and their scope and perceived usefulness is unknown. The purpose of this study was to explore the
Supportive Care in Cancer, 2012
Purpose The partners of cancer survivors may experience distress, anxiety, fear and uncertainty w... more Purpose The partners of cancer survivors may experience distress, anxiety, fear and uncertainty whilst also caring for and supporting a partner who is ill. As they concentrate on the cancer survivor's needs, their own needs may remain unaddressed. Primary care staff may be well placed to support partners as they are generally accessible and may have a better knowledge of the patient's background and family relationships. However, their current involvement in the cancer survivor's and partner's cancer-related care is unclear. This study aimed to describe the experience of the partners of cancer survivors in dealing with cancer-related issues in the first 3 years post-diagnosis, their use of primary care services in relation to these issues and the barriers in doing so and their views on the role that primary care could potentially play in supporting them as carers during this period. Methods Semi-structured interviews with 22 partners of cancer survivors diagnosed within the last 3 years and recruited through six GP practices in the Thames Valley Region of the UK were analysed using the 'framework' approach to thematic analysis. Results Three issues were identified as of particular concern to partners: providing practical support, providing emotional support and managing their own health and well-being. Few partners had sought or received support from primary care specifically for cancer-related issues, indicating confidentiality, lack of knowledge of family relationships and the greater need of the cancer survivor as barriers. Most partners would welcome a proactive approach from primary care and felt that this would provide an opportunity to discuss issues they were concerned about. Conclusions Needs and concerns of the partners of cancer survivors in caring for patients are often not addressed. There is a scope for primary care to elicit these needs and provide greater support. Changes to clinical practice in primary care could lead to greater involvement of and to better outcomes for cancer survivors and their partners. A proactive approach to patients and their partners or other close family members at the time of diagnosis through an offer of support and the inclusion in a designated review appointment at the end of initial treatment would be useful.
Psycho-Oncology, 2010
1 Objective 2 This meta-ethnography synthesises the evidence on the experiences, needs and concer... more 1 Objective 2 This meta-ethnography synthesises the evidence on the experiences, needs and concerns of younger 3 women with breast cancer. Methods 5 Using a method called 'reciprocal translation' we developed a conceptual model to reflect the local 6 and social contexts, issues, processes, needs and concerns of importance in this literature. 7 Findings 8 Key findings relate to the particular point in the life-course at which young women with breast 9 cancer stand. Issues for these women relate to feeling different as a result of cancer, fear of 10 recurrence, feeling 'out of sync' and altered embodied subjectivity. Young women with breast 11 cancer use three processes to integrate the changes that cancer brings, namely balancing, 12 normalising and changing. Our conceptual model also highlights young women's needs, primarily for support, information, childcare, counselling, and spiritual support. Areas of reproduction, 14 fertility and sexuality were also of particular concern. The included papers have methodological 15 limitations which impact on our findings, such as opportunistic data analyses, lack of theoretical 16 frameworks and limited reference to socio-cultural factors. 17 Conclusion 18 The conceptual model developed as a result of this meta-ethnography provides a basis for 19 practitioners to address these young women's concerns more adequately and comprehensively. 20 21 22
Psycho-Oncology, 2011
Background: A cancer diagnosis can have a profound impact on partners and close family members of... more Background: A cancer diagnosis can have a profound impact on partners and close family members of patients. Little is currently known about the long-term impact. Objectives: The objective of this study is to describe health status, levels of anxiety and depression, unmet supportive care needs and positive outcomes in the partners/family members of breast, prostate and colorectal cancer survivors 5-16 years post-diagnosis. Methods: Patients in a linked study were asked to invite a partner or other close family member to complete a self-administered postal questionnaire. Data were analysed by cancer site and time since diagnosis. Matched comparisons were made between cancer patients in the linked study and their partners. Results: An expression of interest was received from 330 partners/family members, and 257 questionnaires (77.9%) were returned. Health status and levels of anxiety and depression were comparable with population norms. Respondents reported an average of 2.7 unmet needs from 34 possible options. Hospital parking, information about familial risk, help managing fear of recurrence and coordination of care were the most cited unmet needs. There was little variation in health status, psychological morbidity and unmet needs by cancer site or time since diagnosis. Concordance between patients and partners was low for anxiety but higher with respect to positive outcomes and some unmet needs. Conclusions: Most partners/family members of long-term cancer survivors report few ongoing issues. However, a small proportion (<10%) have high levels of anxiety and/or moderate or strong unmet needs. Strategies for identifying this group and addressing their needs are required, while allowing the majority to resume normal life.
Patient Education and Counseling, 2009
This review examined the extent to which the information needs of partners and family members of ... more This review examined the extent to which the information needs of partners and family members of cancer patients have been addressed in the literature. Methods We conducted a systematic search of 4 databases for papers published between 1998 and 2008 which assessed the information needs of partners and/or family members of adult cancer patients. Results Thirty-two papers were included in the review. Eleven categories of information need were identified. There was a predominant focus on breast or prostate cancer, leaving a knowledge gap in relation to other cancers. Few papers moved beyond the diagnosis and initial treatment phase, and most did not distinguish between met and unmet needs. Those that did, indicated that partners/family members are more likely to have unmet needs for information about supportive care than for medical information. The concept of 'information need' was generally poorly developed and theorised in the papers. Conclusion Establishing the information needs of partners and family members of cancer patients is an important, but as yet neglected, area of research. In order to develop our understanding of this area more empirical research, with sound conceptual and theoretical foundations is required.
Journal of Clinical Oncology, 2011
Purpose There are 1.2 million long-term cancer survivors in the United Kingdom. Existing research... more Purpose There are 1.2 million long-term cancer survivors in the United Kingdom. Existing research on the health and supportive care needs of these survivors is sparse and inconclusive. This study investigated health status, psychological morbidity, and supportive care needs in long-term cancer survivors in the United Kingdom. Methods Five to 16 years after diagnosis, 1,275 eligible survivors of breast, colorectal, and prostate cancers were approached to participate in a questionnaire survey. The questionnaire explored health status (European Quality of Life–5 Dimensions), psychological morbidity (Hospital Anxiety and Depression Scale), and supportive care needs (Cancer Survivors' Unmet Needs Measure). Data were analyzed by type of cancer and time since diagnosis. Logistic regression was used to identify predictors of unmet supportive care needs. Results The response rate was 51.7% (659 survivors). Overall health status and levels of psychological morbidity were consistent with p...
Feminism & Psychology, 2007
De Abreu, G. (1995) 'Understanding How Children Experience the Relationship between Home... more De Abreu, G. (1995) 'Understanding How Children Experience the Relationship between Home and School Mathematics', Mind, Culture, and Activity 2(2): 11942. De Abreu, G. (1999) 'Learning Mathematics In and Outside School: Two Views on Situated Learning', in J. Bliss, R. Saljo ...
Feminism & Psychology, 2007
Feminism & Psychology, 2007
European Journal of Cancer Care, 2011
Discharge from hospital follow-up is a key time point in the cancer journey. With recommendations... more Discharge from hospital follow-up is a key time point in the cancer journey. With recommendations for earlier discharge of cancer survivors, attention to the discharge process is likely to become increasingly important. This study explored cancer survivors&amp;amp;amp;amp;amp;amp;amp;#39; experiences of discharge from hospital follow-up. Survivors of breast, colorectal and prostate cancer (n= 1275), 5-16 years post diagnosis were approached to take part in a questionnaire survey. The questionnaire included questions about discharge status, provision of time/information prior to discharge, feelings at discharge and satisfaction with how discharge was managed. Completed questionnaires were returned by 659 survivors (51.7%). Approximately one-third of respondents were not discharged from follow-up 5-16 years post diagnosis. Of those discharged, a substantial minority reported insufficient time (27.9%), information (24.5-45.0%) or adverse emotions (30.9%) at the time of discharge. However, 90.6% of respondents reported satisfaction with how discharge from hospital follow-up was managed. Despite high levels of satisfaction, discharge of cancer survivors from hospital follow-up could be improved with the provision of additional time, information and support. Better structuring of the final hospital appointment or a review appointment in primary care at this time could help to ensure that discharge from hospital follow-up is managed optimally for cancer survivors.
Clinical Oncology, 2014
As cancer survival rates continue to increase, it is important to maximise the quality of life of... more As cancer survival rates continue to increase, it is important to maximise the quality of life of cancer survivors. Pelvic radiotherapy is a common cancer treatment. Bladder, bowel and sexual dysfunction are recognised side-effects of treatment, and yet relatively little is known of the extent to which they remain problems in the longer term when patients are often managed by primary care, nor of the psychological impact of symptoms and effects on quality of life. Therefore, the aims of this study were to estimate the prevalence of bladder, bowel and sexual dysfunction late effects in a sample of cancer survivors; assess the impact of time since treatment on symptom prevalence; and explore the relationship between symptoms, psychological morbidity and quality of life. A questionnaire was given to a sample of cancer survivors treated in Oxford who had pelvic radiotherapy 1-11 years previously. The questionnaire measured patient-reported toxicity (Common Toxicity Criteria of Adverse Events/Late Effects of Normal Tissues--Subjective, Objective, Management and Analytic Measure), psychological morbidity (Hospital Anxiety and Depression Scale) and quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30). In total, 418 (57.1%) completed questionnaires were received. Moderate/severe problems with bowel, urinary and sexual functioning were relatively common: bowel urgency (59% women, 45% men); urine urgency (49% women, 46% men); ability to have a sexual relationship affected (24% women, 53% men). Symptoms were just as frequent in those 6-11 years after treatment as in those 1-5 years after treatment. Symptom severity was significantly associated with poorer overall quality of life and higher levels of depression. Late effects are common among long-term cancer survivors who have had pelvic radiotherapy, and are associated with reduced quality of life and psychological morbidity. It is imperative due attention is paid to this issue during the follow-up phase--both in secondary and primary care. Health care professionals providing follow-up care need to be aware of the importance of assessing and monitoring symptoms, and need to be adequately informed on the most appropriate management strategies.
British Journal of General Practice, 2011
Background The Quality and Outcomes Framework (QOF) provides an incentive for practices to establ... more Background The Quality and Outcomes Framework (QOF) provides an incentive for practices to establish a cancer register and conduct a review with cancer patients within 6 months of diagnosis, but implementation is unknown. Aim To describe: (1) implementation of the QOF cancer care review; (2) patients' experiences of primary care over the first 3 years following a cancer diagnosis; (3) patients' views on optimal care; and (4) the views of primary care professionals regarding their cancer care. Design of study Qualitative study using thematic analysis and a framework approach. Setting Six general practices in the Thames Valley area. Conclusion Patients and primary care teams believe primary care has an important role to play in cancer care. Cancer care reviews in their current format are not helpful, with considerable scope for improving practice in this area. An invitation to attend a specific appointment at the end of active treatment may aid transition from secondary care and improve satisfaction with follow-up in primary care.
Objectives: As critiques of disciplinarity become more widespread across academia, the notion of ... more Objectives: As critiques of disciplinarity become more widespread across academia, the notion of psychology as a clearly bounded and coherent discipline comes into question, particularly in its current form. This paper will reflect on how feminist and critical psychologists ...
Adams, E You get on a rollercoaster where you can't get off": Treatment decision-making and 'choi... more Adams, E You get on a rollercoaster where you can't get off": Treatment decision-making and 'choice' in the context of infertility after breast cancer. Adams, E (2007) "You get on a rollercoaster where you can't get off": Treatment decisionmaking and 'choice' in the context of infertility after breast cancer. Feminism & Psychology, 17 (3). pp. 330-335.
Introduction This thesis comprises two chapters. Chapter I is a meta-ethnography of 14 qualitativ... more Introduction This thesis comprises two chapters. Chapter I is a meta-ethnography of 14 qualitative papers on couples' experiences of breast cancer published between 1955 and 2014. It provides a critical review and model of adaptation processes that couples engage in to make sense of the experience of being diagnosed with breast cancer. It outlines how constructions of 'cancer' and 'the couple' are linked to these processes. Chapter II is a longitudinal qualitative study addressing two gaps identified in Chapter I: experiences 1) of younger couples (where the woman is diagnosed under the age of 50) and 2) over time. Four couples participated in two separate interviews, approximately six months apart. 16 interviews were analysed using Interpretative Phenomenological Analysis (IPA). Results focused on change over time in three dimensions with a bearing on couples' adaptation: 1) changes in external circumstances as couples moved along the cancer trajectory; 2) changes in the meaning given to 'cancer'; and 3) changes in the way the couples related to each other. Conclusion: Adaptation to cancer is a relational process that changes over time. Partners need to be more fully integrated into clinical care. Metaphors and meaning-making are linked to couples' adaptation and could be explored in further depth to develop tailored interventions. Overview This thesis was submitted in partial fulfilment of the requirements of the degree of Doctor in Clinical Psychology at the University of Birmingham. It comprises two volumes. Volume I consists of the research component of the degree, Volume II of the clinical component. Volume I is concerned with couples' experiences of breast cancer. It contains three chapters: a literature review, a research paper, and a public dissemination document. The literature review is a meta-ethnography of qualitative literature discussing the experiences of couples when the woman is diagnosed with early stage breast cancer. It provides a critical review as well as explanatory model of the adaptation processes that couples engage in to make sense of the experience of being diagnosed with breast cancer. The research paper provides a qualitative longitudinal analysis of young couples' experiences of early breast cancer, addressing some of the gaps in literature that the meta-ethnography has identified; as well as providing further evidence for the adaptation model it suggested. The public dissemination document provides a brief summary of the first and second chapters. It is written in a more accessible way, free of scientific jargon, to provide an overview of the work for non-specialist audiences. Volume II contains five Clinical Practice Reports (CPR), which were written to evidence clinical practice development over the three years of the Clinical Psychology training course. CPR I is a psychological case formulation of a 78-year old woman with agoraphobia and
European journal of cancer care, 2015
As more patients survive cancer for longer term, the long-term and late effects of treatments bec... more As more patients survive cancer for longer term, the long-term and late effects of treatments become increasingly important issues for cancer survivors and providing information to enable survivors to recognise and manage them becomes an increasingly pressing challenge for health care professionals. The aim of this study was to explore the experiences of cancer survivors regarding information given on potential long-term and late effects of pelvic radiotherapy. Semi-structured interviews were conducted with 28 cancer survivors who had had radiotherapy to the pelvic area for a range of cancers 1-11 years previously. Participants were recruited using maximum variation sampling from a larger questionnaire survey of patients treated at one hospital. Interviews were recorded, transcribed and analysed using Framework. Participants recognised the value of information to reassure and to inform action but also its potentially undesirable effects to frighten or raise anxieties about future pr...
Evidence Based Midwifery
Background. Freebirthing or unassisted birth is the active choice made by a woman to birth withou... more Background. Freebirthing or unassisted birth is the active choice made by a woman to birth without a trained professional present, even where there is access to maternity provision. Aim. To integrate the findings of the current literature on the phenomenon of freebirthing, asking the question: ‘Why do some women choose to freebirth?’ Design. A metasynthesis was carried out based upon Noblit and Hare’s (1988) meta-ethnography. Searches were carried out in March 2013, updated in March 2014 using 15 key databases. Inclusion criteria was applied: primary qualitative work, in English, focusing upon women who had freebirthed intentionally. A quality appraisal was carried out. This paper reports the findings from international studies, as there were no studies based on a UK population. Findings and key conclusions. Four studies were found that incorporated data collected from 272 women. The studies identified were based in the US (n=3) and in Australia (n=1). Four key themes were generated...
Community practitioner : the journal of the Community Practitioners' & Health Visitors' Association, 2010
Semi-structured interviewing is an important tool for gathering data in qualitative research. Thi... more Semi-structured interviewing is an important tool for gathering data in qualitative research. This paper explores some of the joys and challenges associated with research interviewing. It discusses some of the basic skills required to do interviewing well, some of the difficulties associated with interviewing on a practical and emotional level, and how to address them. Being a good interviewer in a research context means to be aware of the responsibility for the participants' wellbeing as well as one's own. Good listening skills and emotional control are among the most crucial skills to develop. This paper summarises some of the skills needed to remain or become a professional, empathetic and ethical interviewer in the context of community practice. If some basic guidelines are followed and combined with practice, the craft of interviewing can become an art.
Tobacco control, 2010
To explore social and behavioural impacts of English smoke-free legislation (SFL) in different et... more To explore social and behavioural impacts of English smoke-free legislation (SFL) in different ethnic groups. A longitudinal, qualitative panel study of smokers using in-depth interviews conducted before and after introduction of SFL. A purposive sample of 32 smokers selected from three ethnic groups in deprived London neighbourhoods with approximately equal numbers of younger and older, male and female respondents. SFL has had positive impacts with half smoking less and three quitting. Although there were no apparent differences in smoking and quitting behaviours between groups, there were notable differences in the social impacts of SFL. The greatest negative impacts were in smokers over 60 years, potentially increasing their social isolation, and on young Somali women whose smoking was driven more underground. In contrast, most other young adult smokers felt relatively unaffected by SFL, describing unexpected social benefits. Although there was high compliance, reports of illegal...
BMJ Supportive & Palliative Care, 2011
AbstractIntroduction and aimsThere are an estimated 2 million cancer survivors in the UK today, w... more AbstractIntroduction and aimsThere are an estimated 2 million cancer survivors in the UK today, with earlier diagnosis and improved treatments leading to an increasing number of long-term survivors. Partners and/or close family members are often a key source of support to the patient, and yet they themselves may experience significant levels of distress and have unmet needs. The main aim
BMJ Supportive & Palliative Care, 2011
AbstractIntroduction and aimsThe role of primary care in the provision of cancer care is poorly d... more AbstractIntroduction and aimsThe role of primary care in the provision of cancer care is poorly defined. Practices in are offered a financial incentive to conduct a review with new patients within 6 months of diagnosis, but the extent to which these reviews occur and their scope and perceived usefulness is unknown. The purpose of this study was to explore the
Supportive Care in Cancer, 2012
Purpose The partners of cancer survivors may experience distress, anxiety, fear and uncertainty w... more Purpose The partners of cancer survivors may experience distress, anxiety, fear and uncertainty whilst also caring for and supporting a partner who is ill. As they concentrate on the cancer survivor's needs, their own needs may remain unaddressed. Primary care staff may be well placed to support partners as they are generally accessible and may have a better knowledge of the patient's background and family relationships. However, their current involvement in the cancer survivor's and partner's cancer-related care is unclear. This study aimed to describe the experience of the partners of cancer survivors in dealing with cancer-related issues in the first 3 years post-diagnosis, their use of primary care services in relation to these issues and the barriers in doing so and their views on the role that primary care could potentially play in supporting them as carers during this period. Methods Semi-structured interviews with 22 partners of cancer survivors diagnosed within the last 3 years and recruited through six GP practices in the Thames Valley Region of the UK were analysed using the 'framework' approach to thematic analysis. Results Three issues were identified as of particular concern to partners: providing practical support, providing emotional support and managing their own health and well-being. Few partners had sought or received support from primary care specifically for cancer-related issues, indicating confidentiality, lack of knowledge of family relationships and the greater need of the cancer survivor as barriers. Most partners would welcome a proactive approach from primary care and felt that this would provide an opportunity to discuss issues they were concerned about. Conclusions Needs and concerns of the partners of cancer survivors in caring for patients are often not addressed. There is a scope for primary care to elicit these needs and provide greater support. Changes to clinical practice in primary care could lead to greater involvement of and to better outcomes for cancer survivors and their partners. A proactive approach to patients and their partners or other close family members at the time of diagnosis through an offer of support and the inclusion in a designated review appointment at the end of initial treatment would be useful.
Psycho-Oncology, 2010
1 Objective 2 This meta-ethnography synthesises the evidence on the experiences, needs and concer... more 1 Objective 2 This meta-ethnography synthesises the evidence on the experiences, needs and concerns of younger 3 women with breast cancer. Methods 5 Using a method called 'reciprocal translation' we developed a conceptual model to reflect the local 6 and social contexts, issues, processes, needs and concerns of importance in this literature. 7 Findings 8 Key findings relate to the particular point in the life-course at which young women with breast 9 cancer stand. Issues for these women relate to feeling different as a result of cancer, fear of 10 recurrence, feeling 'out of sync' and altered embodied subjectivity. Young women with breast 11 cancer use three processes to integrate the changes that cancer brings, namely balancing, 12 normalising and changing. Our conceptual model also highlights young women's needs, primarily for support, information, childcare, counselling, and spiritual support. Areas of reproduction, 14 fertility and sexuality were also of particular concern. The included papers have methodological 15 limitations which impact on our findings, such as opportunistic data analyses, lack of theoretical 16 frameworks and limited reference to socio-cultural factors. 17 Conclusion 18 The conceptual model developed as a result of this meta-ethnography provides a basis for 19 practitioners to address these young women's concerns more adequately and comprehensively. 20 21 22
Psycho-Oncology, 2011
Background: A cancer diagnosis can have a profound impact on partners and close family members of... more Background: A cancer diagnosis can have a profound impact on partners and close family members of patients. Little is currently known about the long-term impact. Objectives: The objective of this study is to describe health status, levels of anxiety and depression, unmet supportive care needs and positive outcomes in the partners/family members of breast, prostate and colorectal cancer survivors 5-16 years post-diagnosis. Methods: Patients in a linked study were asked to invite a partner or other close family member to complete a self-administered postal questionnaire. Data were analysed by cancer site and time since diagnosis. Matched comparisons were made between cancer patients in the linked study and their partners. Results: An expression of interest was received from 330 partners/family members, and 257 questionnaires (77.9%) were returned. Health status and levels of anxiety and depression were comparable with population norms. Respondents reported an average of 2.7 unmet needs from 34 possible options. Hospital parking, information about familial risk, help managing fear of recurrence and coordination of care were the most cited unmet needs. There was little variation in health status, psychological morbidity and unmet needs by cancer site or time since diagnosis. Concordance between patients and partners was low for anxiety but higher with respect to positive outcomes and some unmet needs. Conclusions: Most partners/family members of long-term cancer survivors report few ongoing issues. However, a small proportion (<10%) have high levels of anxiety and/or moderate or strong unmet needs. Strategies for identifying this group and addressing their needs are required, while allowing the majority to resume normal life.
Patient Education and Counseling, 2009
This review examined the extent to which the information needs of partners and family members of ... more This review examined the extent to which the information needs of partners and family members of cancer patients have been addressed in the literature. Methods We conducted a systematic search of 4 databases for papers published between 1998 and 2008 which assessed the information needs of partners and/or family members of adult cancer patients. Results Thirty-two papers were included in the review. Eleven categories of information need were identified. There was a predominant focus on breast or prostate cancer, leaving a knowledge gap in relation to other cancers. Few papers moved beyond the diagnosis and initial treatment phase, and most did not distinguish between met and unmet needs. Those that did, indicated that partners/family members are more likely to have unmet needs for information about supportive care than for medical information. The concept of 'information need' was generally poorly developed and theorised in the papers. Conclusion Establishing the information needs of partners and family members of cancer patients is an important, but as yet neglected, area of research. In order to develop our understanding of this area more empirical research, with sound conceptual and theoretical foundations is required.
Journal of Clinical Oncology, 2011
Purpose There are 1.2 million long-term cancer survivors in the United Kingdom. Existing research... more Purpose There are 1.2 million long-term cancer survivors in the United Kingdom. Existing research on the health and supportive care needs of these survivors is sparse and inconclusive. This study investigated health status, psychological morbidity, and supportive care needs in long-term cancer survivors in the United Kingdom. Methods Five to 16 years after diagnosis, 1,275 eligible survivors of breast, colorectal, and prostate cancers were approached to participate in a questionnaire survey. The questionnaire explored health status (European Quality of Life–5 Dimensions), psychological morbidity (Hospital Anxiety and Depression Scale), and supportive care needs (Cancer Survivors' Unmet Needs Measure). Data were analyzed by type of cancer and time since diagnosis. Logistic regression was used to identify predictors of unmet supportive care needs. Results The response rate was 51.7% (659 survivors). Overall health status and levels of psychological morbidity were consistent with p...
Feminism & Psychology, 2007
De Abreu, G. (1995) 'Understanding How Children Experience the Relationship between Home... more De Abreu, G. (1995) 'Understanding How Children Experience the Relationship between Home and School Mathematics', Mind, Culture, and Activity 2(2): 11942. De Abreu, G. (1999) 'Learning Mathematics In and Outside School: Two Views on Situated Learning', in J. Bliss, R. Saljo ...
Feminism & Psychology, 2007
Feminism & Psychology, 2007
European Journal of Cancer Care, 2011
Discharge from hospital follow-up is a key time point in the cancer journey. With recommendations... more Discharge from hospital follow-up is a key time point in the cancer journey. With recommendations for earlier discharge of cancer survivors, attention to the discharge process is likely to become increasingly important. This study explored cancer survivors&amp;amp;amp;amp;amp;amp;amp;#39; experiences of discharge from hospital follow-up. Survivors of breast, colorectal and prostate cancer (n= 1275), 5-16 years post diagnosis were approached to take part in a questionnaire survey. The questionnaire included questions about discharge status, provision of time/information prior to discharge, feelings at discharge and satisfaction with how discharge was managed. Completed questionnaires were returned by 659 survivors (51.7%). Approximately one-third of respondents were not discharged from follow-up 5-16 years post diagnosis. Of those discharged, a substantial minority reported insufficient time (27.9%), information (24.5-45.0%) or adverse emotions (30.9%) at the time of discharge. However, 90.6% of respondents reported satisfaction with how discharge from hospital follow-up was managed. Despite high levels of satisfaction, discharge of cancer survivors from hospital follow-up could be improved with the provision of additional time, information and support. Better structuring of the final hospital appointment or a review appointment in primary care at this time could help to ensure that discharge from hospital follow-up is managed optimally for cancer survivors.
Clinical Oncology, 2014
As cancer survival rates continue to increase, it is important to maximise the quality of life of... more As cancer survival rates continue to increase, it is important to maximise the quality of life of cancer survivors. Pelvic radiotherapy is a common cancer treatment. Bladder, bowel and sexual dysfunction are recognised side-effects of treatment, and yet relatively little is known of the extent to which they remain problems in the longer term when patients are often managed by primary care, nor of the psychological impact of symptoms and effects on quality of life. Therefore, the aims of this study were to estimate the prevalence of bladder, bowel and sexual dysfunction late effects in a sample of cancer survivors; assess the impact of time since treatment on symptom prevalence; and explore the relationship between symptoms, psychological morbidity and quality of life. A questionnaire was given to a sample of cancer survivors treated in Oxford who had pelvic radiotherapy 1-11 years previously. The questionnaire measured patient-reported toxicity (Common Toxicity Criteria of Adverse Events/Late Effects of Normal Tissues--Subjective, Objective, Management and Analytic Measure), psychological morbidity (Hospital Anxiety and Depression Scale) and quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30). In total, 418 (57.1%) completed questionnaires were received. Moderate/severe problems with bowel, urinary and sexual functioning were relatively common: bowel urgency (59% women, 45% men); urine urgency (49% women, 46% men); ability to have a sexual relationship affected (24% women, 53% men). Symptoms were just as frequent in those 6-11 years after treatment as in those 1-5 years after treatment. Symptom severity was significantly associated with poorer overall quality of life and higher levels of depression. Late effects are common among long-term cancer survivors who have had pelvic radiotherapy, and are associated with reduced quality of life and psychological morbidity. It is imperative due attention is paid to this issue during the follow-up phase--both in secondary and primary care. Health care professionals providing follow-up care need to be aware of the importance of assessing and monitoring symptoms, and need to be adequately informed on the most appropriate management strategies.
British Journal of General Practice, 2011
Background The Quality and Outcomes Framework (QOF) provides an incentive for practices to establ... more Background The Quality and Outcomes Framework (QOF) provides an incentive for practices to establish a cancer register and conduct a review with cancer patients within 6 months of diagnosis, but implementation is unknown. Aim To describe: (1) implementation of the QOF cancer care review; (2) patients' experiences of primary care over the first 3 years following a cancer diagnosis; (3) patients' views on optimal care; and (4) the views of primary care professionals regarding their cancer care. Design of study Qualitative study using thematic analysis and a framework approach. Setting Six general practices in the Thames Valley area. Conclusion Patients and primary care teams believe primary care has an important role to play in cancer care. Cancer care reviews in their current format are not helpful, with considerable scope for improving practice in this area. An invitation to attend a specific appointment at the end of active treatment may aid transition from secondary care and improve satisfaction with follow-up in primary care.
Objectives: As critiques of disciplinarity become more widespread across academia, the notion of ... more Objectives: As critiques of disciplinarity become more widespread across academia, the notion of psychology as a clearly bounded and coherent discipline comes into question, particularly in its current form. This paper will reflect on how feminist and critical psychologists ...