Sandra Herron-Marx | The Open University (original) (raw)

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Papers by Sandra Herron-Marx

Research paper thumbnail of Effect of oral tumour size on quality of life judgements by health care professionals working with head and neck cancer patients: a pilot study

The Journal of Laryngology & Otology, 2009

To investigate whether information about the size of an oral tumour influences the multi-discipli... more To investigate whether information about the size of an oral tumour influences the multi-disciplinary team's judgement about the quality of life of head and neck cancer patients. Using a between-group design, two groups of health care professionals rated a hypothetical patient on 20 outcome variables. The patient description was identical for both groups, except for the tumour size. Comparison of variable ratings revealed only three significant differences between the groups' predictions and no consistency within conditions, suggesting that the participants held few common assumptions about the impact of tumour size on a range of patient experiences. The lack of agreement amongst the health care professionals suggests that, where humane judgements are used in treatment decisions for head and neck cancer patients, these may be random and inconsistent. Consequently, patients should have a direct input into treatment decisions, via formalized quality of life data.

Research paper thumbnail of A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities

The Patient - Patient-Centered Outcomes Research, 2014

Objective Patient and public involvement (PPI) in research has expanded nationally and internatio... more Objective Patient and public involvement (PPI) in research has expanded nationally and internationally over the last decade, and recently there has been significant attention given to understanding its impact on research. Less attention has been given to the impact of PPI on the people involved, yet it has been shown that the success of PPI in research can be reliant on the processes of engagement between these individuals and communities. This paper therefore critically explores the impact of PPI on service users, researchers and communities involved in health and social care research. Data Sources Searches were undertaken from 1995 to April 2012 in the electronic databases MEDLINE, EM-BASE, PsycINFO, Cochrane library, CINAHL, HMIC and HELMIS. Searches were undertaken for grey literature using the databases InvoNet and NHS Evidence. Study Selection Studies were included if they included the impact of PPI on individual service users, researchers or communities under research. Studies were excluded if they were in a foreign language (unless they were deemed critical to the systematic review) or were in children and adolescent services. Study Appraisal Data were extracted using a narrative synthesis, and quality was assessed using the Critical Appraisal Skills Programme. Main Results Service users reported feeling empowered and valued, gaining confidence and life skills. Researchers developed a greater understanding and insight into their research area, gaining respect and a good rapport with the community. The community involved in research became more aware and knowledgeable about their condition. However, lack of preparation and training led some service users to feel unable to contribute to the research, while other service users and communities reported feeling overburdened with the work involved. Researchers reported difficulties in incorporating PPI in meaningful ways due to lack of money and time. Conclusion This is the first international systematic review to focus on the impact of PPI on the people involved in the process. The beneficial and challenging impacts reported highlight the importance of optimising the context and processes of involvement, so creating the potential for PPI to impact positively on the research itself.

Research paper thumbnail of Guidebook for Users Involved in the NHS and Social Care: Finding your Way Around Involvement and Decision-making

Journal of Nursing Management, 2005

Research paper thumbnail of The impact of patient and public involvement on UK NHS health care: a systematic review

International Journal for Quality in Health Care, 2012

Purpose. Patient and public involvement (PPI) has become an integral part of health care with its... more Purpose. Patient and public involvement (PPI) has become an integral part of health care with its emphasis on including and empowering individuals and communities in the shaping of health and social care services. The aims of this study were to identify the impact of PPI on UK National Health Service (NHS) healthcare services and to identify the economic cost. It also examined how PPI is being defined, theorized and conceptualized, and how the impact of PPI is captured or measured.

Research paper thumbnail of Measuring the impact of patient and public involvement: the need for an evidence base

International Journal for Quality in Health Care, 2008

Over the last decade there has been increasing emphasis on patient and public involvement in diff... more Over the last decade there has been increasing emphasis on patient and public involvement in different aspects of healthcare activity in the UK and internationally [1, 2]. The importance of involving patients and the public in the re-design of a patient-focused healthcare system ...

Research paper thumbnail of Mapping the impact of patient and public involvement on health and social care research: a systematic review

Health Expectations, 2012

Background There is an increasing international interest in patient and public involvement (PPI) ... more Background There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research.

Research paper thumbnail of Delays in help seeking at the onset of the symptoms of rheumatoid arthritis: a systematic synthesis of qualitative literature

Annals of the Rheumatic Diseases, 2012

A systematic review of qualitative peer-reviewed publications was conducted to identify drivers o... more A systematic review of qualitative peer-reviewed publications was conducted to identify drivers of and barriers to help-seeking behaviour in adults with new-onset rheumatoid arthritis (RA). 1058 abstracts were searched to identify relevant publications. 21 relevant publications were identified assessed for quality and subjected to analysis informed by thematic and grounded theory frameworks. Several interacting themes were identified including the early experience of symptoms in relation to disease prototypes, minimising the impact of symptoms, speaking to others, gathering information and seeking alternative treatments, and issues related to accessing health services and attitudes towards healthcare professionals. Many people suggested that they had little knowledge of RA before diagnosis, believing RA to be a mild condition that affected older people. These misperceptions made correct symptom interpretation unlikely. Normalising and ignoring symptoms led people to delay in help-seeking. However, when symptoms impacted on daily activities help was usually sought. Individual interpretations of symptoms are both drivers of and barriers to help seeking. Targeted public health interventions are required to inform symptom interpretation and reduce delays.

Research paper thumbnail of Effect of oral tumour size on quality of life judgements by health care professionals working with head and neck cancer patients: a pilot study

The Journal of Laryngology & Otology, 2009

To investigate whether information about the size of an oral tumour influences the multi-discipli... more To investigate whether information about the size of an oral tumour influences the multi-disciplinary team's judgement about the quality of life of head and neck cancer patients. Using a between-group design, two groups of health care professionals rated a hypothetical patient on 20 outcome variables. The patient description was identical for both groups, except for the tumour size. Comparison of variable ratings revealed only three significant differences between the groups' predictions and no consistency within conditions, suggesting that the participants held few common assumptions about the impact of tumour size on a range of patient experiences. The lack of agreement amongst the health care professionals suggests that, where humane judgements are used in treatment decisions for head and neck cancer patients, these may be random and inconsistent. Consequently, patients should have a direct input into treatment decisions, via formalized quality of life data.

Research paper thumbnail of A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities

The Patient - Patient-Centered Outcomes Research, 2014

Objective Patient and public involvement (PPI) in research has expanded nationally and internatio... more Objective Patient and public involvement (PPI) in research has expanded nationally and internationally over the last decade, and recently there has been significant attention given to understanding its impact on research. Less attention has been given to the impact of PPI on the people involved, yet it has been shown that the success of PPI in research can be reliant on the processes of engagement between these individuals and communities. This paper therefore critically explores the impact of PPI on service users, researchers and communities involved in health and social care research. Data Sources Searches were undertaken from 1995 to April 2012 in the electronic databases MEDLINE, EM-BASE, PsycINFO, Cochrane library, CINAHL, HMIC and HELMIS. Searches were undertaken for grey literature using the databases InvoNet and NHS Evidence. Study Selection Studies were included if they included the impact of PPI on individual service users, researchers or communities under research. Studies were excluded if they were in a foreign language (unless they were deemed critical to the systematic review) or were in children and adolescent services. Study Appraisal Data were extracted using a narrative synthesis, and quality was assessed using the Critical Appraisal Skills Programme. Main Results Service users reported feeling empowered and valued, gaining confidence and life skills. Researchers developed a greater understanding and insight into their research area, gaining respect and a good rapport with the community. The community involved in research became more aware and knowledgeable about their condition. However, lack of preparation and training led some service users to feel unable to contribute to the research, while other service users and communities reported feeling overburdened with the work involved. Researchers reported difficulties in incorporating PPI in meaningful ways due to lack of money and time. Conclusion This is the first international systematic review to focus on the impact of PPI on the people involved in the process. The beneficial and challenging impacts reported highlight the importance of optimising the context and processes of involvement, so creating the potential for PPI to impact positively on the research itself.

Research paper thumbnail of Guidebook for Users Involved in the NHS and Social Care: Finding your Way Around Involvement and Decision-making

Journal of Nursing Management, 2005

Research paper thumbnail of The impact of patient and public involvement on UK NHS health care: a systematic review

International Journal for Quality in Health Care, 2012

Purpose. Patient and public involvement (PPI) has become an integral part of health care with its... more Purpose. Patient and public involvement (PPI) has become an integral part of health care with its emphasis on including and empowering individuals and communities in the shaping of health and social care services. The aims of this study were to identify the impact of PPI on UK National Health Service (NHS) healthcare services and to identify the economic cost. It also examined how PPI is being defined, theorized and conceptualized, and how the impact of PPI is captured or measured.

Research paper thumbnail of Measuring the impact of patient and public involvement: the need for an evidence base

International Journal for Quality in Health Care, 2008

Over the last decade there has been increasing emphasis on patient and public involvement in diff... more Over the last decade there has been increasing emphasis on patient and public involvement in different aspects of healthcare activity in the UK and internationally [1, 2]. The importance of involving patients and the public in the re-design of a patient-focused healthcare system ...

Research paper thumbnail of Mapping the impact of patient and public involvement on health and social care research: a systematic review

Health Expectations, 2012

Background There is an increasing international interest in patient and public involvement (PPI) ... more Background There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research.

Research paper thumbnail of Delays in help seeking at the onset of the symptoms of rheumatoid arthritis: a systematic synthesis of qualitative literature

Annals of the Rheumatic Diseases, 2012

A systematic review of qualitative peer-reviewed publications was conducted to identify drivers o... more A systematic review of qualitative peer-reviewed publications was conducted to identify drivers of and barriers to help-seeking behaviour in adults with new-onset rheumatoid arthritis (RA). 1058 abstracts were searched to identify relevant publications. 21 relevant publications were identified assessed for quality and subjected to analysis informed by thematic and grounded theory frameworks. Several interacting themes were identified including the early experience of symptoms in relation to disease prototypes, minimising the impact of symptoms, speaking to others, gathering information and seeking alternative treatments, and issues related to accessing health services and attitudes towards healthcare professionals. Many people suggested that they had little knowledge of RA before diagnosis, believing RA to be a mild condition that affected older people. These misperceptions made correct symptom interpretation unlikely. Normalising and ignoring symptoms led people to delay in help-seeking. However, when symptoms impacted on daily activities help was usually sought. Individual interpretations of symptoms are both drivers of and barriers to help seeking. Targeted public health interventions are required to inform symptom interpretation and reduce delays.