Julia Frost
Biographic Data
| ID | 3603907 |
|---|---|
| NAME | Julia Frost |
| GIVEN NAMES | Julia |
| FAMILY NAME | Frost |
| SIGNATURE | FROST J |
| AFFILIATIONS | University of Plymouth |
| ORCID | 0000-0002-3503-5911 |
| VERIFIED | Yes |
| TOTAL WORKS | 15 |
| TOTAL CITATIONS | 54 |
| WORKS AS AUTHOR | 15 |
| WORKS AS EDITOR | 0 |
| FIRST PUBLICATION YEAR | 2006 |
| LATEST PUBLICATION YEAR | 2026 |
| H-INDEX | 3 |
Exploring Vocabularies of Motive to Optimise Patient Engagement for Drug Development
Patient engagement in the drug development life cycle is becoming normalised, and the return on investment is being quantified. We sought to understand what motivates biotechnology organisations to undertake patient engagement throughout the drug development life cycle, to enable us to generate theoretically and empirically grounded knowledge to optimise patient engagement. This paper draws upon ethnographic research including 200 hours of inform…
Can the Development of Orphan Drugs Include Wider Patient Engagement? A Citizens' Jury to Explore a Promissory Notion
BACKGROUND: Drug development practices for rare diseases promote a promissory notion that the drug pipeline will succeed (with the next new drug/drug trial) and an imaginary of widening patient engagement (often desired but yet to be enacted). Contemporary industry practices of patient engagement are shaped by this promissory, and engagement often includes limited patient perspectives, typically relying on patients from established Patient Organi…
Widening Patient Engagement for Rare Disease Drug Trials
BACKGROUND: Research about patient engagement for people with rare diseases has identified how the experiences of some members of the public are overlooked in relation to clinical trial design and trial participation. As part of a knowledge transfer partnership (KTP), the authors were granted access to patient insight reports about the needs of people with idiopathic pulmonary fibrosis (IPF), to inform clinical trial design and marketing strategy…
Participation, autonomy and control are shared concepts within older people's interpretations of independence
To date, support for independence in older people has been largely focused on achieving practice- and policy-orientated goals such as maintenance of function, remaining in one's own home and reducing the impact of receiving care. Uncertainty about what independence means to older people means that these goals may not align with what matters and should be considered for a more person-centred approach to independence. This study aimed to improve un…
Can a Meta-ethnography Be Updated by Different Reviewers? Reflections From a Recent Update
Over the last decade, there has been a proliferation of published meta-ethnographies. Yet, strategies and techniques for updating have not received the same attention, rendering answers to important methodological questions still elusive. One such question has to do with who can perform an update. Although it is not uncommon for quantitative systematic reviews and statistical meta-analyses to be updated by different reviewers, qualitative synthes…
Patient involvement in qualitative data analysis in a trial of a patient‐centred intervention
BACKGROUND: We conducted a pilot study of an intervention to facilitate patients' agenda setting in clinical consultations. The primary aim of the study was to test the feasibility of running the randomized controlled trial. A secondary objective was to assess the extent to which patient and public involvement (PPI) could contribute to the process of qualitative data analysis (QDA). AIMS: To describe a novel approach to including patient partners…
Asking More of Qualitative Synthesis
We continue the conversation initiated by Sally Thorne’s observations about “metasynthetic madness.” We note that the variety of labels used to describe qualitative syntheses often reflect authors’ disciplines and geographical locations. The purpose of systematic literature searching is to redress authors’ lack of citation of relevant earlier work and to reassure policy makers that qualitative syntheses are systematic and transparent. There is cl…
A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis
This article explores how people with progressive multiple sclerosis give meaning to their experiences. It builds upon the self-management literature, which has captured the tension between the desire for retaining normalcy and the increasing burden of self-management associated with chronic disease progression. This repeat interview study is empirically grounded in 28 interviews with 14 people with progressive multiple sclerosis. We identified g…
Take it slow! Using an augmented fork to reduce eating speed
Meta-Study as Diagnostic
Having previously conducted qualitative syntheses of the diabetes literature, we wanted to explore the changes in theoretical approaches, methodological practices, and the construction of substantive knowledge which have recently been presented in the qualitative diabetes literature. The aim of this research was to explore the feasibility of synthesizing existing qualitative syntheses of patient perspectives of diabetes using meta-study methodolo…
Context and complexity
Self-management policies have presented opportunities for patients with long-term conditions to take control and actively improve their health. However, the work of self-management appears to be packaged in the form of essential and desirable skills and attributes required for success. This article presents the findings of a qualitative study, employing longitudinal diary interviews with 21 patients aged between 60 and 85 years diagnosed with cor…
Processes of Change in an Asthma Self-Care Intervention
In this article, we present a qualitative exploration of the psychological and communication processes that occur within an intervention to improve self-care for people with asthma. In the context of a primary-care-based trial of the intervention, we collected data at three time points for 21 patients, comprising 2 audiotaped consultations (nurse and patient together) and individual semistructured interviews 3 months after the second consultation…
Combining Approaches to Qualitative Data Analysis
In this article I discuss the challenges of managing and analysing qualitative data produced from in-depth interviews. I detail how two methods of data analysis have been combined to explore older women's (over 35yrs) accounts of early pregnancy loss – which formed the data for the author's PhD research. A computer assisted qualitative data analysis (CAQDAS) package, in this case NUDIST4, was a useful tool for managing the breadth of data, and pe…
The loss of possibility
This paper explores the special nature of bereavement in the case of first trimester miscarriage. It is theoretically informed by the sociological literature concerning death and bereavement and is empirically grounded in interviews with 79 women. We argue that the 'scientisation of death' in modern societies contributes to the uncertainty and isolation which distinguish early miscarriage as a unique form of loss. In the absence of clear cultural…
Utopian Theory and the Discourse of Natural Birth
The loss of possibility
This paper explores the special nature of bereavement in the case of first trimester miscarriage. It is theoretically informed by the sociological literature concerning death and bereavement and is empirically grounded in interviews with 79 women. We argue that the 'scientisation of death' in modern societies contributes to the uncertainty and isolation which distinguish early miscarriage as a unique form of loss. In the absence of clear cultural…
Context and complexity
Self-management policies have presented opportunities for patients with long-term conditions to take control and actively improve their health. However, the work of self-management appears to be packaged in the form of essential and desirable skills and attributes required for success. This article presents the findings of a qualitative study, employing longitudinal diary interviews with 21 patients aged between 60 and 85 years diagnosed with cor…
A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis
This article explores how people with progressive multiple sclerosis give meaning to their experiences. It builds upon the self-management literature, which has captured the tension between the desire for retaining normalcy and the increasing burden of self-management associated with chronic disease progression. This repeat interview study is empirically grounded in 28 interviews with 14 people with progressive multiple sclerosis. We identified g…
Meta-Study as Diagnostic
Having previously conducted qualitative syntheses of the diabetes literature, we wanted to explore the changes in theoretical approaches, methodological practices, and the construction of substantive knowledge which have recently been presented in the qualitative diabetes literature. The aim of this research was to explore the feasibility of synthesizing existing qualitative syntheses of patient perspectives of diabetes using meta-study methodolo…
Can a Meta-ethnography Be Updated by Different Reviewers? Reflections From a Recent Update
Over the last decade, there has been a proliferation of published meta-ethnographies. Yet, strategies and techniques for updating have not received the same attention, rendering answers to important methodological questions still elusive. One such question has to do with who can perform an update. Although it is not uncommon for quantitative systematic reviews and statistical meta-analyses to be updated by different reviewers, qualitative synthes…
Combining Approaches to Qualitative Data Analysis
In this article I discuss the challenges of managing and analysing qualitative data produced from in-depth interviews. I detail how two methods of data analysis have been combined to explore older women's (over 35yrs) accounts of early pregnancy loss – which formed the data for the author's PhD research. A computer assisted qualitative data analysis (CAQDAS) package, in this case NUDIST4, was a useful tool for managing the breadth of data, and pe…
Participation, autonomy and control are shared concepts within older people's interpretations of independence
To date, support for independence in older people has been largely focused on achieving practice- and policy-orientated goals such as maintenance of function, remaining in one's own home and reducing the impact of receiving care. Uncertainty about what independence means to older people means that these goals may not align with what matters and should be considered for a more person-centred approach to independence. This study aimed to improve un…
Utopian Theory and the Discourse of Natural Birth
The loss of possibility
This paper explores the special nature of bereavement in the case of first trimester miscarriage. It is theoretically informed by the sociological literature concerning death and bereavement and is empirically grounded in interviews with 79 women. We argue that the 'scientisation of death' in modern societies contributes to the uncertainty and isolation which distinguish early miscarriage as a unique form of loss. In the absence of clear cultural…
Combining Approaches to Qualitative Data Analysis
In this article I discuss the challenges of managing and analysing qualitative data produced from in-depth interviews. I detail how two methods of data analysis have been combined to explore older women's (over 35yrs) accounts of early pregnancy loss – which formed the data for the author's PhD research. A computer assisted qualitative data analysis (CAQDAS) package, in this case NUDIST4, was a useful tool for managing the breadth of data, and pe…
Processes of Change in an Asthma Self-Care Intervention
In this article, we present a qualitative exploration of the psychological and communication processes that occur within an intervention to improve self-care for people with asthma. In the context of a primary-care-based trial of the intervention, we collected data at three time points for 21 patients, comprising 2 audiotaped consultations (nurse and patient together) and individual semistructured interviews 3 months after the second consultation…
Context and complexity
Self-management policies have presented opportunities for patients with long-term conditions to take control and actively improve their health. However, the work of self-management appears to be packaged in the form of essential and desirable skills and attributes required for success. This article presents the findings of a qualitative study, employing longitudinal diary interviews with 21 patients aged between 60 and 85 years diagnosed with cor…
Take it slow! Using an augmented fork to reduce eating speed
Meta-Study as Diagnostic
Having previously conducted qualitative syntheses of the diabetes literature, we wanted to explore the changes in theoretical approaches, methodological practices, and the construction of substantive knowledge which have recently been presented in the qualitative diabetes literature. The aim of this research was to explore the feasibility of synthesizing existing qualitative syntheses of patient perspectives of diabetes using meta-study methodolo…
Asking More of Qualitative Synthesis
We continue the conversation initiated by Sally Thorne’s observations about “metasynthetic madness.” We note that the variety of labels used to describe qualitative syntheses often reflect authors’ disciplines and geographical locations. The purpose of systematic literature searching is to redress authors’ lack of citation of relevant earlier work and to reassure policy makers that qualitative syntheses are systematic and transparent. There is cl…
A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis
This article explores how people with progressive multiple sclerosis give meaning to their experiences. It builds upon the self-management literature, which has captured the tension between the desire for retaining normalcy and the increasing burden of self-management associated with chronic disease progression. This repeat interview study is empirically grounded in 28 interviews with 14 people with progressive multiple sclerosis. We identified g…
Patient involvement in qualitative data analysis in a trial of a patient‐centred intervention
BACKGROUND: We conducted a pilot study of an intervention to facilitate patients' agenda setting in clinical consultations. The primary aim of the study was to test the feasibility of running the randomized controlled trial. A secondary objective was to assess the extent to which patient and public involvement (PPI) could contribute to the process of qualitative data analysis (QDA). AIMS: To describe a novel approach to including patient partners…
Can a Meta-ethnography Be Updated by Different Reviewers? Reflections From a Recent Update
Over the last decade, there has been a proliferation of published meta-ethnographies. Yet, strategies and techniques for updating have not received the same attention, rendering answers to important methodological questions still elusive. One such question has to do with who can perform an update. Although it is not uncommon for quantitative systematic reviews and statistical meta-analyses to be updated by different reviewers, qualitative synthes…
Can the Development of Orphan Drugs Include Wider Patient Engagement? A Citizens' Jury to Explore a Promissory Notion
BACKGROUND: Drug development practices for rare diseases promote a promissory notion that the drug pipeline will succeed (with the next new drug/drug trial) and an imaginary of widening patient engagement (often desired but yet to be enacted). Contemporary industry practices of patient engagement are shaped by this promissory, and engagement often includes limited patient perspectives, typically relying on patients from established Patient Organi…
Widening Patient Engagement for Rare Disease Drug Trials
BACKGROUND: Research about patient engagement for people with rare diseases has identified how the experiences of some members of the public are overlooked in relation to clinical trial design and trial participation. As part of a knowledge transfer partnership (KTP), the authors were granted access to patient insight reports about the needs of people with idiopathic pulmonary fibrosis (IPF), to inform clinical trial design and marketing strategy…
Participation, autonomy and control are shared concepts within older people's interpretations of independence
To date, support for independence in older people has been largely focused on achieving practice- and policy-orientated goals such as maintenance of function, remaining in one's own home and reducing the impact of receiving care. Uncertainty about what independence means to older people means that these goals may not align with what matters and should be considered for a more person-centred approach to independence. This study aimed to improve un…
Exploring Vocabularies of Motive to Optimise Patient Engagement for Drug Development
Patient engagement in the drug development life cycle is becoming normalised, and the return on investment is being quantified. We sought to understand what motivates biotechnology organisations to undertake patient engagement throughout the drug development life cycle, to enable us to generate theoretically and empirically grounded knowledge to optimise patient engagement. This paper draws upon ethnographic research including 200 hours of inform…
Psychology (10 works) · Sociology (10 works) · Qualitative research (9 works) · Medicine (7 works) · Nursing (6 works) · Social science (6 works) · Computer Science (5 works) · Social Psychology (5 works) · Epistemology (4 works) · Mental Health and Patient Involvement (4 works)