Deborah Fenlon | University of Southampton (original) (raw)

Books by Deborah Fenlon

Papers by Deborah Fenlon

Background: Over 50% of people diagnosed with breast cancer in most African countries present lat... more Background: Over 50% of people diagnosed with breast cancer in most African countries present late and report to the hospital with advanced stage III and IV disease, a major reason for the poor survival rate. This study reviewed studies focusing on patient-related factors or reasons contributing to the late presentation or delayed diagnosis of breast cancer in Africa.
Method: A rigorous literature search was conducted with search terms “Breast Neoplasms” AND “Late Presentation” OR “Delayed Diagnosis” AND “Africa” OR “the name of any of the African countries” within CINAHL, African Index Medicus,
MEDLINE, Web of Science and PsycINFO electronic databases. Additional hand searching of reference lists of included articles was conducted. A thematic synthesis was conducted.
Result: Of the eighty-two studies identified, nine were eligible and included in the review. Studies included were conducted in Egypt, Nigeria, Ghana, Kenya andLibya. The factors identified as contributing to late presentation of breast cancer among most African women were negative symptom interpretation, fear, belief in alternative medicine, social relations and networks, lack of trust and confidence in
orthodox medicine, and access to healthcare.
Conclusion: A complex matrix of factors were identified that contribute to the late presentation or delayed diagnosis of breast cancer among most African women.
The orthodox medical system in most African countries is gradually losing their relationship and credibility because of false reassurance, frequent misdiagnosis and strike actions, which is leading to late presentation of breast cancer.

Purpose of the research: Breast cancer survival rates are improving with over 60% likely to live ... more Purpose of the research: Breast cancer survival rates are improving with over 60% likely to live 20 years. As 30% diagnoses occur in women over 70 the prevalence of breast cancer survivors living into older age is increasing. The specific needs and experiences of this group have rarely been addressed. This study aimed to explore older women's experience of living with breast cancer alongside other health conditions , and to identify their information and support needs and preferences. Methods and sample: Data were collected from 28 semi-structured qualitative interviews and 2 focus groups (n ¼ 14), with breast cancer survivors aged 70e90, and were analysed using thematic analysis. Key results: These older breast cancer survivors experienced a range of long-term physical problems resulting from treatment, including poor cosmetic results and poor shoulder movements, and bras and prostheses were often unsuitable. Many were keen to preserve their body image ideal irrespective of age. Reconstruction was rarely discussed, but all would have liked this option. Older women wanted to be treated as individuals rather than uniformly as older people, with their personal physical and social needs (including co-morbidities) taken into account. They expressed a preference for information direct from health professionals. Conclusions: Many breast cancer survivors will live into advanced old age with permanent physical and emotional consequences of their treatment. Holistic and personalized assessment of needs becomes increasingly important with age, particularly with comorbidity. Effective rehabilitative care is important to reduce the impact of breast cancer into old age.

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, Jan 7, 2015

Cancer-related fatigue (CRF) is a frequent and distressing symptom experienced after cancer treat... more Cancer-related fatigue (CRF) is a frequent and distressing symptom experienced after cancer treatment. RESTORE is the first web-based resource designed to enhance self-efficacy to manage CRF following curative-intent treatment. The aim of this study is to test the proof of concept and inform the design of an effectiveness trial. A multi-centre parallel-group two-armed (1:1) exploratory randomised controlled trial (RCT) with qualitative process evaluation was employed in the study. Participants (≥18 years; ≤5 years post treatment with moderate to severe fatigue) were recruited and randomly assigned to RESTORE or a leaflet. Feasibility and acceptability were measured by recruitment, attrition, intervention adherence, completion of outcome measures and process evaluation. Change in self-efficacy to manage CRF was also explored. Outcome measures were completed at baseline (T0), 6 weeks (T1) and 12 weeks (T2). Data were analysed using mixed-effects linear regression and directed content ...

European Journal of Cancer Supplements, 2007

BMJ Supportive & Palliative Care, 2011

Background Following completion of hospital based treatment breast cancer patients often feel iso... more Background Following completion of hospital based treatment breast cancer patients often feel isolated and abandoned and report a lack of information and support to address their recovery needs. Feedback from service users at Breast Cancer Care identified a need for a resource at the end of breast cancer treatment. In collaboration with our Service User Research Partnership (SURP) group we set about designing and delivering this study. Aims To develop a resource for breast cancer survivors based on their identified unmet ...

European Journal of Cancer Supplements, 2009

Psycho-oncology, Jan 2, 2015

The aim of this study is to co-create an evidence-based and theoretically informed web-based inte... more The aim of this study is to co-create an evidence-based and theoretically informed web-based intervention (RESTORE) designed to enhance self-efficacy to live with cancer-related fatigue (CRF) following primary cancer treatment. A nine-step process informed the development of the intervention: (1) review of empirical literature; (2) review of existing patient resources; (3) establish theoretical framework; (4) establish design team with expertise in web-based interventions, CRF and people affected by cancer; (5) develop prototype intervention; (6) user testing phase 1; (7) refinement of prototype; (8) user testing phase 2; and (9) develop final intervention. Key stakeholders made a critical contribution at every step of intervention development, and user testing, which involved an iterative process and resulted in the final intervention. The RESTORE intervention has five sessions; sessions 1 and 2 include an introduction to CRF and goal setting. Sessions 3-5 can be tailored to user p...

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2015

Cancer survivors often experience decreased self-confidence which impacts negatively on their abi... more Cancer survivors often experience decreased self-confidence which impacts negatively on their ability to self-manage the practical, social and emotional problems frequently faced as they emerge from end of treatment. This was a feasibility study of a life-coaching intervention, designed to rebuild confidence of survivors and support transition to life after cancer treatment. A one group pre-test, post-test design was used, recruiting participants from community organisations. Eligibility criteria are as follows: <1 year of completion of primary cancer treatment, aged >18, no metastases, and no mental health problems. Participants received one individualised face-to-face and five telephone coaching sessions over 3 months. Outcome measures are as follows: New General Self-Efficacy Scale, Hope Scale, Personal Well-being Index, Assessment of Survivorship Concerns, Quality of Life in Adult Cancer Survivors, Hospital Anxiety and Depression Scale, Social Difficulties Index, and a goa...

Journal of cancer survivorship : research and practice, 2015

Cancer survivors are increasingly expected to manage the consequences of cancer and its treatment... more Cancer survivors are increasingly expected to manage the consequences of cancer and its treatment for themselves. There is evidence that self-efficacy is important for successful self-management and that this can be enhanced with support. The purpose of this study was to assess self-efficacy to manage problems in the year following primary treatment. This cross-sectional online survey included cancer survivors who had completed their treatment within the past 12 months. Self-efficacy was assessed and variables expected to be associated with self-efficacy were measured using validated scales including quality of life, well-being, illness perceptions, depression and social support. One hundred eighty-two respondents (mean age 50; 81 % female) completed the survey. They had been treated for a range of cancers; most commonly breast (45 %). Self-efficacy scores varied between individuals and according to the illness-related task to be managed. Respondents were least confident in managing...

Background: Over 50% of people diagnosed with breast cancer in most African countries present lat... more Background: Over 50% of people diagnosed with breast cancer in most African countries present late and report to the hospital with advanced stage III and IV disease, a major reason for the poor survival rate. This study reviewed studies focusing on patient-related factors or reasons contributing to the late presentation or delayed diagnosis of breast cancer in Africa.
Method: A rigorous literature search was conducted with search terms “Breast Neoplasms” AND “Late Presentation” OR “Delayed Diagnosis” AND “Africa” OR “the name of any of the African countries” within CINAHL, African Index Medicus,
MEDLINE, Web of Science and PsycINFO electronic databases. Additional hand searching of reference lists of included articles was conducted. A thematic synthesis was conducted.
Result: Of the eighty-two studies identified, nine were eligible and included in the review. Studies included were conducted in Egypt, Nigeria, Ghana, Kenya andLibya. The factors identified as contributing to late presentation of breast cancer among most African women were negative symptom interpretation, fear, belief in alternative medicine, social relations and networks, lack of trust and confidence in
orthodox medicine, and access to healthcare.
Conclusion: A complex matrix of factors were identified that contribute to the late presentation or delayed diagnosis of breast cancer among most African women.
The orthodox medical system in most African countries is gradually losing their relationship and credibility because of false reassurance, frequent misdiagnosis and strike actions, which is leading to late presentation of breast cancer.

Purpose of the research: Breast cancer survival rates are improving with over 60% likely to live ... more Purpose of the research: Breast cancer survival rates are improving with over 60% likely to live 20 years. As 30% diagnoses occur in women over 70 the prevalence of breast cancer survivors living into older age is increasing. The specific needs and experiences of this group have rarely been addressed. This study aimed to explore older women's experience of living with breast cancer alongside other health conditions , and to identify their information and support needs and preferences. Methods and sample: Data were collected from 28 semi-structured qualitative interviews and 2 focus groups (n ¼ 14), with breast cancer survivors aged 70e90, and were analysed using thematic analysis. Key results: These older breast cancer survivors experienced a range of long-term physical problems resulting from treatment, including poor cosmetic results and poor shoulder movements, and bras and prostheses were often unsuitable. Many were keen to preserve their body image ideal irrespective of age. Reconstruction was rarely discussed, but all would have liked this option. Older women wanted to be treated as individuals rather than uniformly as older people, with their personal physical and social needs (including co-morbidities) taken into account. They expressed a preference for information direct from health professionals. Conclusions: Many breast cancer survivors will live into advanced old age with permanent physical and emotional consequences of their treatment. Holistic and personalized assessment of needs becomes increasingly important with age, particularly with comorbidity. Effective rehabilitative care is important to reduce the impact of breast cancer into old age.

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, Jan 7, 2015

Cancer-related fatigue (CRF) is a frequent and distressing symptom experienced after cancer treat... more Cancer-related fatigue (CRF) is a frequent and distressing symptom experienced after cancer treatment. RESTORE is the first web-based resource designed to enhance self-efficacy to manage CRF following curative-intent treatment. The aim of this study is to test the proof of concept and inform the design of an effectiveness trial. A multi-centre parallel-group two-armed (1:1) exploratory randomised controlled trial (RCT) with qualitative process evaluation was employed in the study. Participants (≥18 years; ≤5 years post treatment with moderate to severe fatigue) were recruited and randomly assigned to RESTORE or a leaflet. Feasibility and acceptability were measured by recruitment, attrition, intervention adherence, completion of outcome measures and process evaluation. Change in self-efficacy to manage CRF was also explored. Outcome measures were completed at baseline (T0), 6 weeks (T1) and 12 weeks (T2). Data were analysed using mixed-effects linear regression and directed content ...

European Journal of Cancer Supplements, 2007

BMJ Supportive & Palliative Care, 2011

Background Following completion of hospital based treatment breast cancer patients often feel iso... more Background Following completion of hospital based treatment breast cancer patients often feel isolated and abandoned and report a lack of information and support to address their recovery needs. Feedback from service users at Breast Cancer Care identified a need for a resource at the end of breast cancer treatment. In collaboration with our Service User Research Partnership (SURP) group we set about designing and delivering this study. Aims To develop a resource for breast cancer survivors based on their identified unmet ...

European Journal of Cancer Supplements, 2009

Psycho-oncology, Jan 2, 2015

The aim of this study is to co-create an evidence-based and theoretically informed web-based inte... more The aim of this study is to co-create an evidence-based and theoretically informed web-based intervention (RESTORE) designed to enhance self-efficacy to live with cancer-related fatigue (CRF) following primary cancer treatment. A nine-step process informed the development of the intervention: (1) review of empirical literature; (2) review of existing patient resources; (3) establish theoretical framework; (4) establish design team with expertise in web-based interventions, CRF and people affected by cancer; (5) develop prototype intervention; (6) user testing phase 1; (7) refinement of prototype; (8) user testing phase 2; and (9) develop final intervention. Key stakeholders made a critical contribution at every step of intervention development, and user testing, which involved an iterative process and resulted in the final intervention. The RESTORE intervention has five sessions; sessions 1 and 2 include an introduction to CRF and goal setting. Sessions 3-5 can be tailored to user p...

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2015

Cancer survivors often experience decreased self-confidence which impacts negatively on their abi... more Cancer survivors often experience decreased self-confidence which impacts negatively on their ability to self-manage the practical, social and emotional problems frequently faced as they emerge from end of treatment. This was a feasibility study of a life-coaching intervention, designed to rebuild confidence of survivors and support transition to life after cancer treatment. A one group pre-test, post-test design was used, recruiting participants from community organisations. Eligibility criteria are as follows: <1 year of completion of primary cancer treatment, aged >18, no metastases, and no mental health problems. Participants received one individualised face-to-face and five telephone coaching sessions over 3 months. Outcome measures are as follows: New General Self-Efficacy Scale, Hope Scale, Personal Well-being Index, Assessment of Survivorship Concerns, Quality of Life in Adult Cancer Survivors, Hospital Anxiety and Depression Scale, Social Difficulties Index, and a goa...

Journal of cancer survivorship : research and practice, 2015

Cancer survivors are increasingly expected to manage the consequences of cancer and its treatment... more Cancer survivors are increasingly expected to manage the consequences of cancer and its treatment for themselves. There is evidence that self-efficacy is important for successful self-management and that this can be enhanced with support. The purpose of this study was to assess self-efficacy to manage problems in the year following primary treatment. This cross-sectional online survey included cancer survivors who had completed their treatment within the past 12 months. Self-efficacy was assessed and variables expected to be associated with self-efficacy were measured using validated scales including quality of life, well-being, illness perceptions, depression and social support. One hundred eighty-two respondents (mean age 50; 81 % female) completed the survey. They had been treated for a range of cancers; most commonly breast (45 %). Self-efficacy scores varied between individuals and according to the illness-related task to be managed. Respondents were least confident in managing...