Bio


I have been a qualitative health services researcher since 2006 and am experienced in mixed methods research and evaluation. I use a range of methods in my work including interviews, focus groups, ethnography, participant observation, document review, survey and literature reviews. My content areas of focus have been in palliative, end of life, long term and integrated care. Through this work, I have become familiar with the challenges and ethical issues of conducting research with vulnerable groups and appropriate methods for eliciting information in sensitive subject areas, such as in exploring what bereaved family caregivers think makes for a good death. My specific research interest is in understanding the patient experience of health services in order to improve the implementation and delivery of services. I also enjoy engaging with patients as partners in the research process, from research question formulation through to dissemination. I have also worked with professional groups and stakeholders, both as participants and as collaborators in research and evaluation.
Prior to this appointment at Stanford, I was a Research Fellow in the Centre for Health Services Studies at the University of Kent, UK.

Current Role at Stanford


Social Science Research Associate

Education & Certifications


  • PhD, University of Kent, Social Policy (2016)
  • MSc, Canterbury Christ Church University, Health Promotion and Public Health (2006)
  • BA, University of California, San Diego, Psychology (2005)

Work Experience


  • Research Fellow, Centre for Health Services Studies, University of Kent (1/2014 - 9/2015)

    Location

    Canterbury, UK

  • Research Design Service - South East Adviser, Centre for Health Services Studies, University of Kent (4/2015 - 9/2015)

    Location

    Canterbury, UK

  • Research Associate, Centre for Health Services Studies, University of Kent (12/2006 - 12/2013)

    Location

    Canterbury, UK

  • Research Assistant, Canterbury Christ Church University (9/2005 - 8/2006)

    Location

    Canterbury, UK

All Publications


  • "Along for the Ride": A Qualitative Study Exploring Patient and Caregiver Perceptions of Decision Making in Cancer Care. MDM policy & practice Holdsworth, L. M., Zionts, D., Asch, S. M., Winget, M. 2020; 5 (1): 2381468320933576

    Abstract

    Background. Shared decision making is a cornerstone of an informed consent process for cancer treatment, yet there are often many physician and patient-related barriers to participation in the process. Decisions in cancer care are often perceived as relating to a discrete, treatment decision event, yet there is evidence that decisions are longitudinal in nature and reflect a multifactorial experience. Objective. To explore patient and caregiver perceptions of the choices and decision-making opportunities within cancer care. Design. Qualitative in-depth interviews with 37 cancer patients and 7 caregivers carried out as part of an evaluation of a cancer center's effort to improve patient experience. Results. Participants described decision making related to four distinct phases in complex cancer care, with physicians leading, and often limiting, decisions related to disease assessment and treatment options and access, and patients leading decisions related to physician selection. Though physicians led many decisions, patients had a moderating influence on treatment, such that if patients did not like options presented, they would reconsider their options and sometimes switch physicians. Patients had various strategies for dealing with uncertainty when faced with decisions, such as seeking additional information to make an informed choice or making a conscious choice to defer decision making to the physician. Limitations. Patients were sampled from one academic cancer center that serves a predominantly Caucasian, Asian, and Hispanic/Latino population and received complex treatment. Conclusion. Because of the complexity of cancer treatment, many patients felt as though they were a "passenger" in decision making about care and did not lead many of the decisions, though many patients trusted their doctors to make the best decisions and were comforted by their expertise.

    View details for DOI 10.1177/2381468320933576

    View details for PubMedID 32587894

    View details for PubMedCentralID PMC7294494

  • Negotiating Lay and Clinical Issues: Implementing a Lay Navigation Program in Cancer Care. Journal of oncology practice Holdsworth, L. M., Zionts, D., Wang, S., Veruttipong, D., Brown-Johnson, C., Asch, S. M., Rosenthal, E. L., Winget, M. 2019: JOP1900339

    Abstract

    PURPOSE: Patients with cancer face daunting coordination problems at a vulnerable time. Lay navigation programs offer 1 approach to address these problems, but how to best implement these programs presents challenges. We sought to describe those implementation challenges at 1 academic cancer center to inform future efforts.METHODS: We performed a mixed methods study using standard implementation outcomes 1 year after program initiation. Quantitative data from the electronic medical record and qualitative data from in-depth interviews, focus groups, and ethnographic observations were included in analyses. The study took place at a National Cancer Institute-designated comprehensive cancer center across 12 tumor-specific clinics.RESULTS: Supportive care concerns, scheduling, and clinical-related issues were the most frequent issues navigators encountered. Effective navigation required continuous, time-consuming, invisible work, including building and maintaining a broad knowledge base of resources and health system processes, as well as cultivating relationships with diverse and changing clinical teams. The acceptability and appropriateness of lay navigator activities were mixed among clinic and social work staff, related to negotiating lines between clinical and nonclinical care.CONCLUSION: After 1 year of implementation, lay navigators still found it difficult to interpret and prioritize complex patient needs in a way that all clinical staff found appropriate. Negotiating these issues has made it difficult to develop the strong relationships with clinical teams that are needed for an integrated approach to patient care. To successfully coordinate patient care, it seems that lay navigation programs should be integrated with clinical teams to provide more seamless patient care.

    View details for DOI 10.1200/JOP.19.00339

    View details for PubMedID 31693450

  • Conceptualizing “project resiliency”: A qualitative study exploring the implementation of coordinated care with a context of system change Journal of Integrated Care Holdsworth, L. M. 2019; 27 (2): 163-172
  • Effectiveness of a Lay Navigation Program in an Academic Cancer Center. Journal of oncology practice Winget, M., Holdsworth, L., Wang, S., Veruttipong, D., Zionts, D., Rosenthal, E. L., Asch, S. M. 2019: JOP1900337

    Abstract

    A navigation program with lay navigators that targets patients with cancer who are receiving multiple treatment modalities was launched with the goal of improving care coordination.Pseudo-randomization and mixed methods were used to evaluate the program: patients with even-numbered medical records were assigned to navigation help, and patients with odd-numbered medical records made up the control group. Eligible patients were those scheduled to receive at least two treatment modalities. Intent-to-treat, as-treated, and high-user cohorts with propensity matched controls were used to assess the outcomes: patient experience, emergency room (ER) use, and unplanned hospitalizations. In-depth patient interviews explored how and why patients interacted with the navigator program and overall patient experience.Marginally lower incidence rate ratios (IRRs) for both ER visits (IRR, 1.17; 95% CI, 1.00 to 1.36) and unplanned hospitalizations (IRR, 1.18; 95% CI, 0.97 to 1.43) occurred in as-treated patients who used navigation help and who lived within 50 miles of Stanford Hospital compared with their matched controls; other cohort analyses had similar results. Survey scores for patients who received help with navigation did not differ significantly from those for corresponding controls in any of the analytic cohorts. Patient interviews suggested that the navigation program had low visibility among patients and that lay navigators drove use of the program. Patient-reported positive experiences included getting help with complex scheduling, alleviating anxiousness through access to information and educational resources, and getting help with activities outside traditional health care; negative experiences stemmed from having expectations that were not met.Marginally lower rates of ER visits and unplanned hospitalizations for a small subset of patients, low penetration of the navigation program, and mixed comments from patient interviews suggest that a navigation program with a broad scope that targets a large population is not effective. Modifying the program to have a narrower scope of practice may help better target anxious or high-risk patients.

    View details for DOI 10.1200/JOP.19.00337

    View details for PubMedID 31647691

  • Palliative Care Disincentives in CKD: Changing Policy to Improve CKD Care AMERICAN JOURNAL OF KIDNEY DISEASES Tamura, M., O'Hare, A. M., Lin, E., Holdsworth, L. M., Malcolm, E., Moss, A. H. 2018; 71 (6): 866–73

    Abstract

    The dominant health delivery model for advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD) in the United States, which focuses on provision of dialysis, is ill-equipped to address many of the needs of seriously ill patients. Although palliative care may address some of these gaps in care, its integration into advanced CKD care has been suboptimal due to several health system barriers. These barriers include uneven access to specialty palliative care services, underdeveloped models of care for seriously ill patients with advanced CKD, and misaligned policy incentives. This article reviews policies that affect the delivery of palliative care for this population, discusses reforms that could address disincentives to palliative care, identifies quality measurement issues for palliative care for individuals with advanced CKD and ESRD, and considers potential pitfalls in the implementation of new models of integrated palliative care. Reforming health care delivery in ways that remove policy disincentives to palliative care for patients with advanced CKD and ESRD will fill a critical gap in care.

    View details for PubMedID 29510920

    View details for PubMedCentralID PMC5970958

  • Optimum hospice at home services for end-of-life care: protocol of a mixed-methods study employing realist evaluation BMJ OPEN Butler, C., Brigden, C., Gage, H., Williams, P., Holdsworth, L., Greene, K., Wee, B., Barclay, S., Wilson, P. 2018; 8 (5): e021192

    Abstract

    Hospice at home (HAH) services aim to enable patients to be cared for and die in their place of choice, if that is at home, and to achieve a 'good death'. There is a considerable range of HAH services operating in England. The published evidence focuses on evaluations of individual services which vary considerably, and there is a lack of consistency in terms of the outcome measures reported. The evidence, therefore, does not provide generalisable information, so the question 'What are the features of hospice at home service models that work, for whom, and under what circumstances?' remains unanswered. The study aims to answer this question.This is a mixed-methods study in three phases informed by realist evaluation methodology. All HAH services in England will be invited to participate in a telephone survey to enable the development of a typology of services. In the second phase, case study sites representing the different service types will collect patient data and recruit carers, service managers and commissioners to gather quantitative and qualitative data about service provision and outcomes. A third phase will synthesise and refine the results through consensus workshops.The first survey phase has university ethics approval and the second phase, Integrated Research Application System (IRAS) and Health Research Authority (HRA) approval (IRAS ID:205986, REC:17/LO/0880); the third phase does not require ethics approval. Dissemination will be facilitated by project coapplicants with established connections to national policy-making forums, in addition to publications, conference presentations and reports targeted to service providers and commissioners.

    View details for DOI 10.1136/bmjopen-2017-021192

    View details for Web of Science ID 000435567200150

    View details for PubMedID 29769257

    View details for PubMedCentralID PMC5961564

  • Adaptation of the Ambulatory and Home Care Record for collecting palliative care service utilization data from family carers in the UK: a pilot study Pilot and Feasibility Studies Holdsworth, L. M., Gage, H., Williams, P., Butler, C. 2018
  • Impact of a hospice rapid response service on preferred place of death, and costs BMC PALLIATIVE CARE Gage, H., Holdsworth, L. M., Flannery, C., Williams, P., Butler, C. 2015; 14

    Abstract

    Many people with a terminal illness would prefer to die at home. A new palliative rapid response service (RRS) provided by a large hospice provider in South East England was evaluated (2010) to provide evidence of impact on achieving preferred place of death and costs. The RRS was delivered by a team of trained health care assistants and available 24/7. The purpose of this study was to (i) compare the characteristics of RRS users and non-users, (ii) explore differences in the proportions of users and non-users dying in the place of their choice, (iii) monitor the whole system service utilisation of users and non-users, and compare costs.All hospice patients who died with a preferred place of death recorded during an 18 month period were included. Data (demographic, preferences for place of death) were obtained from hospice records. Dying in preferred place was modelled using stepwise logistic regression analysis. Service use data (period between referral to hospice and death) were obtained from general practitioners, community providers, hospitals, social services, hospice, and costs calculated using validated national tariffs.Of 688 patients referred to the hospice when the RRS was operational, 247 (35.9%) used it. Higher proportions of RRS users than non-users lived in their own homes with a co-resident carer (40.3% vs. 23.7%); more non-users lived alone or in residential care (58.8% vs. 76.3%). Chances of dying in the preferred place were enhanced 2.1 times by being a RRS user, compared to a non-user, and 1.5 times by having a co-resident carer, compared to living at home alone or in a care home. Total service costs did not differ between users and non-users, except when referred to hospice very close to death (users had higher costs).Use of the RRS was associated with increased likelihood of dying in the preferred place. The RRS is cost neutral.Current controlled trials ISRCTN32119670, 22 June 2012.

    View details for DOI 10.1186/s12904-015-0065-4

    View details for Web of Science ID 000367137100001

    View details for PubMedID 26701763

  • Bereaved carers' accounts of the end of life and the role of care providers in a "good death': A qualitative study PALLIATIVE MEDICINE Holdsworth, L. M. 2015; 29 (9): 834-841

    Abstract

    The way that people die is particularly important to those who are left behind and this memory is not limited to the moment of death, but encompasses the entire end-of-life phase. While a number of attributes for a 'good death' have been identified, less is known about how care providers feature within these conceptualisations.The aim of this article is to describe the end-of-life experience from the point of view of bereaved family carers with particular reference to the role that care providers play in shaping this experience.Qualitative interviews carried out as part of a study to evaluate a new rapid response hospice at home service. An interpretive thematic analysis using the Framework approach was used to examine how family carers judge a 'good death' and how care providers feature in the attributes of a 'good death'.A total of 44 interviews with bereaved family carers from a hospice population in the South East of England.Six themes were identified as attributes of a good death in which care providers had a key role: social engagement and connection to identity, care provider characteristics and actions, carer's confidence and ability to care, preparation and awareness of death, presentation of the patient at death and support after death for protected grieving.Care providers played a much wider role in social aspects of care at the end of life than previously considered.

    View details for DOI 10.1177/0269216315584865

    View details for Web of Science ID 000361491800007

    View details for PubMedID 25944545

  • A quasi-experimental controlled evaluation of the impact of a hospice rapid response community service for end-of-life care on achievement of preferred place of death PALLIATIVE MEDICINE Holdsworth, L. M., Gage, H., Coulton, S., King, A., Butler, C. 2015; 29 (9): 817-825

    Abstract

    Rapid response services operating 24 h a day have been advocated in UK health policy to support dying patients at home, though there is limited evidence of their effectiveness.To assess the impact of a rapid response hospice at home service (intervention) on people dying in their preferred place, and carer quality of life, compared to usual care (control).Quasi-experimental multi-centred controlled evaluation. Patient data were collected from hospice records; carers completed postal questionnaires to report quality of life, anxiety and depression.Community served by one hospice (three contiguous sites) in South East England; 953 patients who died with a preferred place of death recorded and 64 carers who completed questionnaires.There was no significant difference between control and intervention groups in proportions achieving preferred place of death (61.9% vs 63.0% (odds ratio: 0.949; 95% confidence interval: 0.788-1.142)). People living at home alone were less likely to die where they wanted (0.541; 95% confidence interval: 0.438-0.667). Carers in the intervention group reported worse mental health component summary scores (short form-12, p = 0.03) than those in the control group; there were no differences in other carer outcomes.The addition of a rapid response hospice at home service did not have a significant impact on helping patients to die where they wanted in an area already well served by community palliative care. Recording preferences, and changes over time, is difficult and presented challenges for this study.

    View details for DOI 10.1177/0269216315582124

    View details for Web of Science ID 000361491800005

    View details for PubMedID 25881623

  • Setting up a new evidence-based hospice-at-home service in England. International journal of palliative nursing Butler, C., Holdsworth, L. 2013; 19 (7): 355-359

    Abstract

    A hospice service in south east England determined to develop a new hospice-at-home service to enable greater patient choice and facilitate patients dying at home, which is often a patient's preferred place. As a first step, a literature review was commissioned to establish the evidence base to inform the design of the new service. A range of research had been reported on hospice-at-home services, but the service configurations evaluated in these studies and the context in which they operated had not been described in detail. This paper briefly summarises the results of the literature review and then describes the new service that was established, including the setting and context. Experiences with the service in terms of activity, acceptability, and problems are described. The aim is to assist providers and commissioners seeking to establish or develop similar services and to help them predict the likely impact of such services.

    View details for PubMedID 24273813

  • Evaluation of a hospice rapid response community service: a controlled evaluation BMC PALLIATIVE CARE Butler, C., Holdsworth, L. M., Coulton, S., Gage, H. 2012; 11

    Abstract

    While most people faced with a terminal illness would prefer to die at home, less than a third in England are enabled to do so with many dying in National Health Service hospitals. Patients are more likely to die at home if their carers receive professional support. Hospice rapid response teams, which provide specialist palliative care at home on a 24/7 on-call basis, are proposed as an effective way to help terminally ill patients die in their preferred place, usually at home. However, the effectiveness of rapid response teams has not been rigorously evaluated in terms of patient, carer and cost outcomes.The study is a pragmatic quasi-experimental controlled trial. The primary outcome for the quantitative evaluation for patients is dying in their preferred place of death. Carers' quality of life will be evaluated using postal questionnaires sent at patient intake to the hospice service and eight months later. Carers' perceptions of care received and the patient's death will be assessed in one to one interviews at 6 to 8 months post bereavement. Service utilisation costs including the rapid response intervention will be compared to those of usual care.The study will contribute to the development of the evidence base on outcomes for patients and carers and costs of hospice rapid response teams operating in the community.Current controlled trials ISRCTN32119670.

    View details for DOI 10.1186/1472-684X-11-11

    View details for Web of Science ID 000313902400001

    View details for PubMedID 22846107

  • Preferences for end of life: views of hospice patients, family carers, and community nurse specialists. International journal of palliative nursing Holdsworth, L., King, A. 2011; 17 (5): 251-255

    Abstract

    An exploratory qualitative study was undertaken with the aim of identifying issues around discussing and recording preferences on place of death from the perspective of hospice patients, carers, and hospice community nurses. A purposive sample was selected from three hospices in the south east of England of six community nurse specialists (CNSs), five patients, five carers, and five bereaved carers. The patients and carers said it was important to them to discuss their preferences, but they acknowledged that discussing dying was difficult. The CNSs stated that there were several barriers that inhibited end-of-life discussions and that discussing preferences was not always a primary goal of care planning. It was felt among the service users, particularly the bereaved carers, that having more knowledge about what to expect of the dying process, knowing their relative's wishes, and understanding the role of hospice and palliative care could improve the experience of events leading up to death.

    View details for PubMedID 21647080

  • A retrospective analysis of preferred and actual place of death for hospice patients. International journal of palliative nursing Holdsworth, L., Fisher, S. 2010; 16 (9): 424-?

    Abstract

    The purpose of this study was to explore recording rates of preferences, and the preferred and actual place of death among hospice patients. Data was collected retrospectively from a group of three hospices over a 6-month period. Of 298 patients, 174 patients (58.4%) had no expressed preference for place of death. The congruence of preferred and actual place of death was: home 52.5%; hospice 86.2%; hospital 100%; and care home 50%. The overall congruence was 61.7% and kappa value was 0.38 (0.23-0.52, 95% confidence interval). The low rate of expressed preferences suggests that congruence of preferred and actual place of death was a suitable outcome measurement for less than half of hospice patients. A wider range of patient-focused indicators for identifying the quality of end-of life services is needed as preferred place of death may not be the only suitable indicator for all patients.

    View details for PubMedID 20871496

  • Supported further education provision for people with long-term mental health needs: Findings from a survey of further education colleges and primary care trusts across the south east of England PERSPECTIVES IN PUBLIC HEALTH Morrison, I., Clift, S. M., Stosz, L. M. 2010; 130 (2): 78-85

    Abstract

    Government policy has highlighted the need for inclusive education for people with long-term mental health needs. As a starting point, the aim of this study was to assess the extent to which further education (FE) colleges in the south east of England provide supported education for people with mental health needs, and the extent to which these organizations collaborate with local NHS primary care trusts (PCTs). Also, to assess the potential numbers of people who might benefit from fully inclusive educational provision needs assessment, together with the potential healthcare cost savings.A survey was conducted of 33 multi-faculty FE colleges and 49 PCTs via structured telephone interviews with nominated representatives, in order to collect quantitative and qualitative data of the provision of supported education provision for people with mental health needs. The FE survey enquired whether they had provision for people with mental health needs, and if so, the details. The PCT survey gathered data on their caseload of standard and enhanced clients for the population covered, and the extent to which they were aware of the benefits of learning on mental health.Only 15 FE colleges (45%) had some form of provision for students with long-term mental health needs, and only six PCTs (12%) provided an educational link co-ordinator. FE colleges with existing provision averaged 70 students per college, against an attainable potential target of 130 students per college. Encouragingly, cohorts of students with mental health needs were reported to have levels of 'retention', 'achievement' and 'success' rates that were comparable with students from the general population on mainstream courses--e.g. expected rates of around 85% retention, 75% achievement (of those retained), 65% success (overall from enrolled to achieving), with some 5% progressing to university and 12% into employment. On present levels of FE recruitment, there is a potential net saving to the taxpayer of 13 million sterling pounds in mental healthcare costs (around 50%) and if recruitment increased to projected levels, then the potential net saving to the taxpayer would be 26 million sterling pounds. The substantial estimated savings to the health budget not only shows that supported education provision in FE is effective in promoting mental health, it also indicates the high level of its cost-effectiveness.This research has implications for budget holders, health promotion staff and mental health teams working within a social model of health, and the collaborative use of resources to assist people recovering from or managing mental health difficulties in moving forward in their lives.

    View details for DOI 10.1177/1757913909360454

    View details for Web of Science ID 000275757000020

    View details for PubMedID 20455487