Mary Flatley - Academia.edu (original) (raw)

Papers by Mary Flatley

Nicholson C et al (2010) Everybody matters 2: promoting dignity in acute care through effective c... more Nicholson C et al (2010) Everybody matters 2: promoting dignity in acute care through effective communication. Nursing Times; 106: 21, 12-14. The Dignity in Care Project (DCP) aims to deepen understanding and develop practical interventions to promote dignified care in hospitals. A key feature is that "everybody matters" (a project slogan) and that promoting and sustaining dignity in acute care requires recognition and support for staff as well as for patients and their families. DCP is a nurse led research collaboration with Royal Free Hampstead Trust, Barnet and Chase Farm Hospitals Trust and City University. Practical interventions devised by the project are presented around three key themes. Part 1 of this series explored the first theme, "maintaining identity: see who I am", and this second part examines the second theme, "creating community: connect with me". This recognises that in the act of caring, nurses receive as well as give. Dignified care has a reciprocity where both carer and patient/family give and receive, rather than simply involving a list of practical tasks done to someone. The third and final part looks at "shared decision making: involve me" (Bridges et al, 2009). Promoting communication that connects with the person Communicating well is complex and involves aspects of ourselves, the other person and the context in which communication occurs. Promoting communication may involve learning skills, recognising attitudes and changing the environment in which care is given. We used the Shortened Quality of Interaction Schedule (SQUIS) (Dean et al, 1993) to help nurses to value existing good communication in their unit and identify areas to develop. Valuing and enhancing good communication: SQUIS is a simple observation tool to allow staff to stop, look, listen and appreciate the quality of communication where they work (Ashburner et al, 2004). We used two people, one project nurse and a senior clinician from the unit, to record interactions between staff, patients and relatives/visitors. This was done for up to 20 minutes in communal areas of the ward/department. The interactions are coded into four categories: G Positive social interaction (PS) denotes empathy, connecting with the person; G Basic care interaction (BC) records communication around getting a task done; G Neutral interaction (N) is a brief, indifferent interaction; G Negative interaction (N-) records communication that ignores, patronises or is rude. The ward team then discuss the exercise together, focusing on recognising good practice in their area and looking at how compassionate communication can be promoted. They can then consider what specific processes or behaviours in the ward may diminish this. The wards in our project found SQUIS extremely helpful in providing a structured way to stop and observe their everyday

BMJ Open, 2019

Objectives To understand the experiences of young adults with cancer for whom cure is not likely,... more Objectives To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16-40 years and how this might affect care. Design We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care. setting Three cancer centres and associated palliative care services across England. Participants We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16-24 years for whom there may be specialist cancer centres and those 16-40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16-24 years and 30 people 25-40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of <12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops. results Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns. Conclusions Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16-40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

The impact of stroke : the relatives' experiences

SIGLEAvailable from British Library Document Supply Centre-DSC:DXN035765 / BLDSC - British Librar... more SIGLEAvailable from British Library Document Supply Centre-DSC:DXN035765 / BLDSC - British Library Document Supply CentreGBUnited Kingdo

Background: With enhanced longevity, many people in late old age find themselves frail and living... more Background: With enhanced longevity, many people in late old age find themselves frail and living at home, often alone. Whilst conceptualisations vary, frailty is often used in clinical practice as a directional term, to refer to older people at particular risk of adverse health outcomes and to organise care. Investigation of the experience of being frail is a complementary and necessary addition to international research endeavours clearly to define, predict and measure frailty. Currently, there is little empirical work exploring how people over time manage being frail. Objective: The study aimed to understand the experience over time of home-dwelling older people deemed frail, in order to enhance the evidence base for person-centred approaches to frail elder care. Design: The study design combined psychosocial narrative approaches and psychodynamically informed observation. Data on the experience of 15 frail older people were collected by visiting them up to four times over 17 mon...

Palliative Medicine, 2020

Background:Palliative care services face challenges in adapting and responding to the COVID-19 pa... more Background:Palliative care services face challenges in adapting and responding to the COVID-19 pandemic. Understanding how palliative care needs and outcomes have changed during the pandemic compared to before the pandemic is crucial to inform service planning and research initiatives.Aim:To evaluate the impact of COVID-19 on symptoms, clinical characteristics, and outcomes for patients referred to a hospital-based palliative care service in a district general hospital in London, UK.Design:A retrospective service evaluation. Data were extracted from the electronic patient records.Setting/participants:The first 60 inpatients with confirmed COVID-19 infection, referred to the hospital palliative care service between 1 March 2020 and 23 April 2020, and another 60 inpatients, referred to the hospital palliative care service between 11 March 2019 and 23 April 2019, were included from a district general hospital in East London, UK.Results:Patients with COVID-19 have lower comorbidity scor...

Journal of Palliative Medicine, 2020

International Journal of Nursing Studies, 2019

Journal of adolescent and young adult oncology, Jan 11, 2017

To review the qualitative literature on experiences of and preferences for end-of-life care of pe... more To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences i...

Hospitalisation and discharge of stroke patients: the relatives’ experiences

Research in health promotion and nursing, 1993

It is well recognised that stroke can have a devastating effect on the patient, but the effects o... more It is well recognised that stroke can have a devastating effect on the patient, but the effects on the family are less clear cut. Long-term studies of informal carers have identified a fairly high prevalence of depression, emotional reactions, sleep disturbance and social isolation (Greveson et al., 1991). Little research has been carried out on looking at family experiences during rehabilitation. Anderson (1992), in a lengthy study found that in the first few weeks many patients and supporters had high hopes for the effects of rehabilitation, but when interviewed later expressed disappointment at the results. The aim of this study was to explore the experiences of relatives during the time the patient was in hospital and following discharge. A major theme to emerge is that relatives need to understand about the stroke in order to cope with it. One important aspect of this is the relatives role in relation to the progress and recovery of the patient. This chapter focuses on two facets of this role which are related to the concept of health promotion in important ways. These are: being informed; being involved in care.

International Journal of Nursing Studies, 2010

What is already known about the topic? Acute hospital admission can be a significant event for ol... more What is already known about the topic? Acute hospital admission can be a significant event for older people and their relatives, and can threaten older people's sense of identity and involvement. Enriched environments for care are associated with all those involved (that is, staff, students, older patients and relatives) experiencing a sense of security, belonging, continuity, purpose, achievement and significance. Relationship-centred approaches to care can enhance the wellbeing of older patients, staff and relatives. What this paper adds This review confirms that relationship-centred approaches to care underpin more positive experiences of acute health care for older patients and relatives. It reports that older patients' and relatives' experiences in

Journal of Advanced Nursing, 2012

Aims. To synthesize evidence and knowledge from published research about nurses' experiences of n... more Aims. To synthesize evidence and knowledge from published research about nurses' experiences of nurse-patient relationships with adult patients in general, acute inpatient hospital settings. Background. While primary research on nurses' experiences has been reported, it has not been previously synthesized. Design. Meta-ethnography. Data sources. Published literature from Australia, Europe, and North America, written in English between January 1999-October 2009 was identified from databases: CINAHL, Medline, British Nursing Index and PsycINFO. Review methods. Qualitative studies describing nurses' experiences of the nursepatient relationship in acute hospital settings were reviewed and synthesized using the meta-ethnographic method. Results. Sixteen primary studies (18 papers) were appraised as high quality and met the inclusion criteria. The findings show that while nurses aspire to develop therapeutic relationships with patients, the organizational setting at a unit level is strongly associated with nurses' capacity to build and sustain these relationships. The organizational conditions of critical care settings appear best suited to forming therapeutic relationships, while nurses working on general wards are more likely to report moral distress resulting from delivering unsatisfactory care. General ward nurses can then withdraw from attempting to emotionally engage with patients. Conclusion. The findings of this meta-ethnography draw together the evidence from several qualitative studies and articulate how the organizational setting at a unit level can strongly influence nurses' capacity to build and sustain therapeutic relationships with patients. Service improvements need to focus on how to optimize the organizational conditions that support nurses in their relational work with patients.

BMJ Open, 2019

ObjectivesTo understand the experiences of young adults with cancer for whom cure is not likely, ... more ObjectivesTo understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16–40 years and how this might affect care.DesignWe used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care.SettingThree cancer centres and associated palliative care services across England.ParticipantsWe aimed for a purposive sample of 45 people with cancer from two groups: those aged 16–24 years for whom there may be specialist cancer centres and those 16–40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16–24 years...

Practical interventions are presented around three main themes in this three part series. This th... more Practical interventions are presented around three main themes in this three part series. This third part explores "shared decision making--involve me" (Bridges et al, 2009). This recognises the importance of engaging patients, family and staff in decisions about care and treatment. The article offers a range of interventions to hear the voices of patients, staff and relatives.

Everybody matters 3: engaging patients and relatives in decision making to promote dignity

Nursing times

Practical interventions are presented around three main themes in this three part series. This th... more Practical interventions are presented around three main themes in this three part series. This third part explores "shared decision making--involve me" (Bridges et al, 2009). This recognises the importance of engaging patients, family and staff in decisions about care and treatment. The article offers a range of interventions to hear the voices of patients, staff and relatives.

AN INTRODUCTION TO BRIGHTLIGHT ON END OF LIFE CARE FOR YOUNG ADULTS: WHAT DO YOUNG ADULTS WITH CANCER AND THEIR FAMILIES NEED AND HOW CAN IT BEST BE DELIVERED?

BMJ Supportive & Palliative Care, 2013

ABSTRACT The end of life care needs of young adults, aged 16-40 years, are poorly described in cu... more ABSTRACT The end of life care needs of young adults, aged 16-40 years, are poorly described in current literature and no specific guidance exists for professionals that takes account of factors such as rarity, cancer type, heterogeneity and influence of life stage. We will use using realistic evaluation to understand: A. Core components in pathways of care in the last year of life for people with cancer aged 16-40 years. B. How young adults and their families can be supported to achieve their preferences for care. C. Challenges for health and social care professionals. Work commences in 2013 and is linked to quantitative data from NIHR national programme, BRIGHTLIGHT (http://www.brightlightstudy.com). Research will be conducted in three or more sites across UK and includes patients, families and multiple professional disciplines as participants, shaping investigation and outputs. There are five phases: 1. Drawing together literature and national cancer intelligence; 2. Interviews with young adults, families and professionals; 3. Scenario workshops with families and professionals; 4. Analysis and interpretation of data including refinement through discussion with a panel of experts; 5. Development of recommendations for practice. Findings from BRIGHTLIGHT will be synthesised with our emerging qualitative data to inform explanations on needs and preferences for care in young adults and their families as the project progresses. This innovative, comprehensive study of the end of life needs of young adults aged 16-40 years uses in-depth, multi-layered data which will inform understanding of need and inform policy and service delivery.

International journal of nursing studies, 2008

A LETTER BY A CLERGYMAN ON THE POSITION OF MEDICAL OFFICERS OF UNIONS

Everybody matters. 1: How getting to know your patients helps to promote dignified care

Nursing times

The Dignity in Care Project aims to develop practical interventions to promote dignified care in ... more The Dignity in Care Project aims to develop practical interventions to promote dignified care in hospitals, embedded in the project slogan: "Everybody matters: sustaining dignity in care." It is a nurse led research collaboration with Royal Free Hampstead and Barnet and Chase Farm Hospitals Trusts and City University. Practical interventions devised by the project are presented around three main themes that emerged from the views of older people and their relatives (Bridges et al, 2010; 2009). The first theme of "maintaining identity--see who I am" focuses on knowing about people, while the second of "creating community--connect with me" recognises that in the act of caring, nurses receive as well as give. The last theme of "shared decision making--involve me" looks at how decisions about care are made. This first article in a three part series summarises the project and focuses on the first theme. It reports on practical initiatives to enhanc...

Everybody matters 2: promoting dignity in acute care through effective communication

Nursing times

The Dignity in Care Project (DCP) aims to deepen understanding and develop practical intervention... more The Dignity in Care Project (DCP) aims to deepen understanding and develop practical interventions to promote dignified care in hospitals. A key feature is that "everybody matters" (a project slogan) and that promoting and sustaining dignity in acute care requires recognition and support for staff as well as for patients and their families. DCP is a nurse led research collaboration with Royal Free Hampstead Trust, Barnet and Chase Farm Hospitals Trust and City University. Practical interventions devised by the project are presented around three keythemes. Part 1 of this series explored the first theme, "maintaining identity: see who I am", and this second part examines the second theme, "creating community: connect with me". This recognises that in the act of caring, nurses receive as well as give. Dignified care has a reciprocity where both carer and patient/family give and receive, rather than simply involving a list of practical tasks done t o someon...

International Journal of Nursing Studies, 2013

Nicholson C et al (2010) Everybody matters 2: promoting dignity in acute care through effective c... more Nicholson C et al (2010) Everybody matters 2: promoting dignity in acute care through effective communication. Nursing Times; 106: 21, 12-14. The Dignity in Care Project (DCP) aims to deepen understanding and develop practical interventions to promote dignified care in hospitals. A key feature is that "everybody matters" (a project slogan) and that promoting and sustaining dignity in acute care requires recognition and support for staff as well as for patients and their families. DCP is a nurse led research collaboration with Royal Free Hampstead Trust, Barnet and Chase Farm Hospitals Trust and City University. Practical interventions devised by the project are presented around three key themes. Part 1 of this series explored the first theme, "maintaining identity: see who I am", and this second part examines the second theme, "creating community: connect with me". This recognises that in the act of caring, nurses receive as well as give. Dignified care has a reciprocity where both carer and patient/family give and receive, rather than simply involving a list of practical tasks done to someone. The third and final part looks at "shared decision making: involve me" (Bridges et al, 2009). Promoting communication that connects with the person Communicating well is complex and involves aspects of ourselves, the other person and the context in which communication occurs. Promoting communication may involve learning skills, recognising attitudes and changing the environment in which care is given. We used the Shortened Quality of Interaction Schedule (SQUIS) (Dean et al, 1993) to help nurses to value existing good communication in their unit and identify areas to develop. Valuing and enhancing good communication: SQUIS is a simple observation tool to allow staff to stop, look, listen and appreciate the quality of communication where they work (Ashburner et al, 2004). We used two people, one project nurse and a senior clinician from the unit, to record interactions between staff, patients and relatives/visitors. This was done for up to 20 minutes in communal areas of the ward/department. The interactions are coded into four categories: G Positive social interaction (PS) denotes empathy, connecting with the person; G Basic care interaction (BC) records communication around getting a task done; G Neutral interaction (N) is a brief, indifferent interaction; G Negative interaction (N-) records communication that ignores, patronises or is rude. The ward team then discuss the exercise together, focusing on recognising good practice in their area and looking at how compassionate communication can be promoted. They can then consider what specific processes or behaviours in the ward may diminish this. The wards in our project found SQUIS extremely helpful in providing a structured way to stop and observe their everyday

BMJ Open, 2019

Objectives To understand the experiences of young adults with cancer for whom cure is not likely,... more Objectives To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16-40 years and how this might affect care. Design We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care. setting Three cancer centres and associated palliative care services across England. Participants We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16-24 years for whom there may be specialist cancer centres and those 16-40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16-24 years and 30 people 25-40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of <12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops. results Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns. Conclusions Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16-40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

The impact of stroke : the relatives' experiences

SIGLEAvailable from British Library Document Supply Centre-DSC:DXN035765 / BLDSC - British Librar... more SIGLEAvailable from British Library Document Supply Centre-DSC:DXN035765 / BLDSC - British Library Document Supply CentreGBUnited Kingdo

Background: With enhanced longevity, many people in late old age find themselves frail and living... more Background: With enhanced longevity, many people in late old age find themselves frail and living at home, often alone. Whilst conceptualisations vary, frailty is often used in clinical practice as a directional term, to refer to older people at particular risk of adverse health outcomes and to organise care. Investigation of the experience of being frail is a complementary and necessary addition to international research endeavours clearly to define, predict and measure frailty. Currently, there is little empirical work exploring how people over time manage being frail. Objective: The study aimed to understand the experience over time of home-dwelling older people deemed frail, in order to enhance the evidence base for person-centred approaches to frail elder care. Design: The study design combined psychosocial narrative approaches and psychodynamically informed observation. Data on the experience of 15 frail older people were collected by visiting them up to four times over 17 mon...

Palliative Medicine, 2020

Background:Palliative care services face challenges in adapting and responding to the COVID-19 pa... more Background:Palliative care services face challenges in adapting and responding to the COVID-19 pandemic. Understanding how palliative care needs and outcomes have changed during the pandemic compared to before the pandemic is crucial to inform service planning and research initiatives.Aim:To evaluate the impact of COVID-19 on symptoms, clinical characteristics, and outcomes for patients referred to a hospital-based palliative care service in a district general hospital in London, UK.Design:A retrospective service evaluation. Data were extracted from the electronic patient records.Setting/participants:The first 60 inpatients with confirmed COVID-19 infection, referred to the hospital palliative care service between 1 March 2020 and 23 April 2020, and another 60 inpatients, referred to the hospital palliative care service between 11 March 2019 and 23 April 2019, were included from a district general hospital in East London, UK.Results:Patients with COVID-19 have lower comorbidity scor...

Journal of Palliative Medicine, 2020

International Journal of Nursing Studies, 2019

Journal of adolescent and young adult oncology, Jan 11, 2017

To review the qualitative literature on experiences of and preferences for end-of-life care of pe... more To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences i...

Hospitalisation and discharge of stroke patients: the relatives’ experiences

Research in health promotion and nursing, 1993

It is well recognised that stroke can have a devastating effect on the patient, but the effects o... more It is well recognised that stroke can have a devastating effect on the patient, but the effects on the family are less clear cut. Long-term studies of informal carers have identified a fairly high prevalence of depression, emotional reactions, sleep disturbance and social isolation (Greveson et al., 1991). Little research has been carried out on looking at family experiences during rehabilitation. Anderson (1992), in a lengthy study found that in the first few weeks many patients and supporters had high hopes for the effects of rehabilitation, but when interviewed later expressed disappointment at the results. The aim of this study was to explore the experiences of relatives during the time the patient was in hospital and following discharge. A major theme to emerge is that relatives need to understand about the stroke in order to cope with it. One important aspect of this is the relatives role in relation to the progress and recovery of the patient. This chapter focuses on two facets of this role which are related to the concept of health promotion in important ways. These are: being informed; being involved in care.

International Journal of Nursing Studies, 2010

What is already known about the topic? Acute hospital admission can be a significant event for ol... more What is already known about the topic? Acute hospital admission can be a significant event for older people and their relatives, and can threaten older people's sense of identity and involvement. Enriched environments for care are associated with all those involved (that is, staff, students, older patients and relatives) experiencing a sense of security, belonging, continuity, purpose, achievement and significance. Relationship-centred approaches to care can enhance the wellbeing of older patients, staff and relatives. What this paper adds This review confirms that relationship-centred approaches to care underpin more positive experiences of acute health care for older patients and relatives. It reports that older patients' and relatives' experiences in

Journal of Advanced Nursing, 2012

Aims. To synthesize evidence and knowledge from published research about nurses' experiences of n... more Aims. To synthesize evidence and knowledge from published research about nurses' experiences of nurse-patient relationships with adult patients in general, acute inpatient hospital settings. Background. While primary research on nurses' experiences has been reported, it has not been previously synthesized. Design. Meta-ethnography. Data sources. Published literature from Australia, Europe, and North America, written in English between January 1999-October 2009 was identified from databases: CINAHL, Medline, British Nursing Index and PsycINFO. Review methods. Qualitative studies describing nurses' experiences of the nursepatient relationship in acute hospital settings were reviewed and synthesized using the meta-ethnographic method. Results. Sixteen primary studies (18 papers) were appraised as high quality and met the inclusion criteria. The findings show that while nurses aspire to develop therapeutic relationships with patients, the organizational setting at a unit level is strongly associated with nurses' capacity to build and sustain these relationships. The organizational conditions of critical care settings appear best suited to forming therapeutic relationships, while nurses working on general wards are more likely to report moral distress resulting from delivering unsatisfactory care. General ward nurses can then withdraw from attempting to emotionally engage with patients. Conclusion. The findings of this meta-ethnography draw together the evidence from several qualitative studies and articulate how the organizational setting at a unit level can strongly influence nurses' capacity to build and sustain therapeutic relationships with patients. Service improvements need to focus on how to optimize the organizational conditions that support nurses in their relational work with patients.

BMJ Open, 2019

ObjectivesTo understand the experiences of young adults with cancer for whom cure is not likely, ... more ObjectivesTo understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16–40 years and how this might affect care.DesignWe used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care.SettingThree cancer centres and associated palliative care services across England.ParticipantsWe aimed for a purposive sample of 45 people with cancer from two groups: those aged 16–24 years for whom there may be specialist cancer centres and those 16–40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16–24 years...

Practical interventions are presented around three main themes in this three part series. This th... more Practical interventions are presented around three main themes in this three part series. This third part explores "shared decision making--involve me" (Bridges et al, 2009). This recognises the importance of engaging patients, family and staff in decisions about care and treatment. The article offers a range of interventions to hear the voices of patients, staff and relatives.

Everybody matters 3: engaging patients and relatives in decision making to promote dignity

Nursing times

Practical interventions are presented around three main themes in this three part series. This th... more Practical interventions are presented around three main themes in this three part series. This third part explores "shared decision making--involve me" (Bridges et al, 2009). This recognises the importance of engaging patients, family and staff in decisions about care and treatment. The article offers a range of interventions to hear the voices of patients, staff and relatives.

AN INTRODUCTION TO BRIGHTLIGHT ON END OF LIFE CARE FOR YOUNG ADULTS: WHAT DO YOUNG ADULTS WITH CANCER AND THEIR FAMILIES NEED AND HOW CAN IT BEST BE DELIVERED?

BMJ Supportive & Palliative Care, 2013

ABSTRACT The end of life care needs of young adults, aged 16-40 years, are poorly described in cu... more ABSTRACT The end of life care needs of young adults, aged 16-40 years, are poorly described in current literature and no specific guidance exists for professionals that takes account of factors such as rarity, cancer type, heterogeneity and influence of life stage. We will use using realistic evaluation to understand: A. Core components in pathways of care in the last year of life for people with cancer aged 16-40 years. B. How young adults and their families can be supported to achieve their preferences for care. C. Challenges for health and social care professionals. Work commences in 2013 and is linked to quantitative data from NIHR national programme, BRIGHTLIGHT (http://www.brightlightstudy.com). Research will be conducted in three or more sites across UK and includes patients, families and multiple professional disciplines as participants, shaping investigation and outputs. There are five phases: 1. Drawing together literature and national cancer intelligence; 2. Interviews with young adults, families and professionals; 3. Scenario workshops with families and professionals; 4. Analysis and interpretation of data including refinement through discussion with a panel of experts; 5. Development of recommendations for practice. Findings from BRIGHTLIGHT will be synthesised with our emerging qualitative data to inform explanations on needs and preferences for care in young adults and their families as the project progresses. This innovative, comprehensive study of the end of life needs of young adults aged 16-40 years uses in-depth, multi-layered data which will inform understanding of need and inform policy and service delivery.

International journal of nursing studies, 2008

A LETTER BY A CLERGYMAN ON THE POSITION OF MEDICAL OFFICERS OF UNIONS

Everybody matters. 1: How getting to know your patients helps to promote dignified care

Nursing times

The Dignity in Care Project aims to develop practical interventions to promote dignified care in ... more The Dignity in Care Project aims to develop practical interventions to promote dignified care in hospitals, embedded in the project slogan: "Everybody matters: sustaining dignity in care." It is a nurse led research collaboration with Royal Free Hampstead and Barnet and Chase Farm Hospitals Trusts and City University. Practical interventions devised by the project are presented around three main themes that emerged from the views of older people and their relatives (Bridges et al, 2010; 2009). The first theme of "maintaining identity--see who I am" focuses on knowing about people, while the second of "creating community--connect with me" recognises that in the act of caring, nurses receive as well as give. The last theme of "shared decision making--involve me" looks at how decisions about care are made. This first article in a three part series summarises the project and focuses on the first theme. It reports on practical initiatives to enhanc...

Everybody matters 2: promoting dignity in acute care through effective communication

Nursing times

The Dignity in Care Project (DCP) aims to deepen understanding and develop practical intervention... more The Dignity in Care Project (DCP) aims to deepen understanding and develop practical interventions to promote dignified care in hospitals. A key feature is that "everybody matters" (a project slogan) and that promoting and sustaining dignity in acute care requires recognition and support for staff as well as for patients and their families. DCP is a nurse led research collaboration with Royal Free Hampstead Trust, Barnet and Chase Farm Hospitals Trust and City University. Practical interventions devised by the project are presented around three keythemes. Part 1 of this series explored the first theme, "maintaining identity: see who I am", and this second part examines the second theme, "creating community: connect with me". This recognises that in the act of caring, nurses receive as well as give. Dignified care has a reciprocity where both carer and patient/family give and receive, rather than simply involving a list of practical tasks done t o someon...

International Journal of Nursing Studies, 2013