Jenny Hewison

University of Leeds, Leeds, England, United Kingdom

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Publications (130)408.8 Total impact

  • [Show abstract] [Hide abstract]
    ABSTRACT: To explore factors that influence decision-making in relation to prenatal diagnostic testing (PDT) for inherited retinal disease (IRD). Semi-structured interviews were conducted with 50 adults with IRD, selected from a larger sample to provide a diversity of backgrounds and opinions on genetic testing. Interviews were transcribed verbatim and analysed using thematic analysis. Mostly participants supported PDT, believing that it would provide information to help them prepare for and plan the future care of the child and the potential for early access to emerging therapies. Opposition to PDT stemmed from its use to justify termination of pregnancy, with participants feeling that it was not justified as they retained a good quality of life despite their visual impairment. Participants raised concerns about the risk of PDT and the accuracy of the results. However, most suggested that it should be available as an option for others, but for specific reasons and not as a part of routine care. The variation in attitudes towards PDT and uncertainty about the risk and accuracy of results suggest that individuals at risk of having a child with IRD should have access to genetic counselling to support decision making. This article is protected by copyright. All rights reserved.
    Prenatal Diagnosis 06/2015; DOI:10.1002/pd.4644 · 3.27 Impact Factor
  • Vikki J Snaith · Stephen C Robson · Jenny Hewison
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    ABSTRACT: to gain insight into low risk nulliparous women׳s experiences of a telephone support intervention (TSI) and TSI with uterine artery Doppler screening (UADS) intervention and their views of the structure of current antenatal care provision. postnatal semi-structured interviews were analysed using a thematic framework approach. The interviews formed a subset of data from a mixed methods study. participants were 45 low risk nulliparous women who had consented to take part in a randomised controlled trial of two antenatal support interventions; the trial was conducted at a large maternity unit in the North East of England, UK from 2004 to 2007. most of the women in the study expressed positive views about the telephone support intervention (TSI) and the antenatal care they had received. Uterine artery Doppler screening was acceptable to women but did not feature highly when women recalled their antenatal experiences. Those who viewed their pregnancy as complicated by medical, social or emotional difficulties would have preferred more frequent antenatal visits. Views of antenatal care provision were influenced by women׳s perception of their pregnancy progression and the relationship developed with their midwife. although the TSI was viewed positively by women, it was valued most by those who required additional support. The intervention was not a substitute for face to face midwifery visits. Future research is needed to investigate the potential of utilising telephone contact to provide antenatal care for women who have pregnancies complicated by physical, psychological or emotional issues. The findings were consistent with previous evidence to show that the relationship between women and midwives is fundamental to women׳s experience of antenatal care. Copyright © 2015 Elsevier Ltd. All rights reserved.
    Midwifery 01/2015; 31(5). DOI:10.1016/j.midw.2015.01.007 · 1.71 Impact Factor
  • Jenny Hewison
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    ABSTRACT: Probably the main purpose of reproductive technologies is to enable people who choose to do so to avoid the birth of a baby with a disabling condition. However the conditions women want information about and the 'price' they are willing to pay for obtaining that information vary enormously. Individual women have to arrive at their own prenatal testing choices by 'trading off' means and ends in order to resolve the dilemmas facing them. We know very little about how individuals make these trade-offs, so it is difficult to predict how new technologies will affect their choices and preferences. Uptake decisions can be expected to change, especially in the group of women who now are put off by some aspect of the current screening approach, where the avoidance of miscarriage risk may have provided a kind of 'psychological shelter', protecting a lot of people from having to make other decisions. Technologies such as Pre-implantation Genetic Diagnosis may remove a second 'psychological shelter' because they offer the means of avoiding the birth of an affected child without terminating a pregnancy. Even if new technologies will make some decisions easier in terms of their cognitive demands, they will also create new dilemmas and decision making will not necessarily become less stressful in emotional terms. Key challenges concern information and decision-making. © 2014 John Wiley & Sons Ltd.
    Bioethics 01/2015; 29(1):9-18. DOI:10.1111/bioe.12124 · 1.36 Impact Factor
  • Kate M Hill · Maureen Twiddy · Jenny Hewison · Allan O House
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    ABSTRACT: Continuity of care is widely acknowledged as important for patients with multi-morbidity but simple, service-orientated indices cannot capture the full impact of continuity in complex care delivery systems. The patient’s perspective is important to assess outcomes fully and this is challenging because generic measures of patient-perceived continuity are lacking. We investigate the Chao Perception of Continuity (Chao PC) scale to determine its suitability as a measure of continuity of care for patients with a long-term condition (stroke), and co-morbidity, in a primary care setting. Design and Setting: A questionnaire study embedded in a prospective observational cohort study of outcomes for patients following acute stroke. Participants: 168 community dwelling patients (58% male) mean age 68 years a minimum one year post-stroke. Functional status: Barthel Index mean =16. Intervention: A 23-item questionnaire, the Chao Perception of Continuity (Chao PC) scale, sent by post to their place of residence or administered face to face as part of the final cohort study assessment. 310 patients were invited to participate; 168 (54%) completed a questionnaire. All 23 questionnaire items were entered into a Principal Component Analysis. Emergent factors from the exploratory analysis were (1) inter-personal trust (relational continuity); (2) interpersonal knowledge and information (informational and relational continuity) and (3) the process of care (managerial continuity). The strongest of these was inter-personal trust. The context-specific items in the Chao PC scale are difficult for respondents to interpret in a United Kingdom Primary Care setting resulting in missing data and low response rates. The Chao-PC therefore cannot be recommended for wider application as a general measure of continuity of care without significant modification. Our findings reflect the acknowledged dimensions of continuity and support the concept of continuity of care as a multi-dimensional construct. We demonstrate the overlapping boundaries across the dimensions in the factor structure derived. Trust and interpersonal knowledge are clearly identified as valuable components of any patient-perceived measure of continuity of care.
    BMC Family Practice 12/2014; 15(1). DOI:10.1186/s12875-014-0191-8 · 1.74 Impact Factor
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  • H Jafri · J Hewison · E Sheridan · S Ahmed
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    ABSTRACT: This study aimed to assess acceptability of prenatal testing (PNT) and termination of pregnancy (TOP) for a range of conditions in Pakistani parents with and without a child with a genetic condition. A structured questionnaire assessing acceptability of PNT and TOP for 30 conditions was completed by 400 Pakistani participants: 200 parents with a child with a genetic condition (100 fathers and 100 mothers) and 200 parents without an affected child (100 fathers and 100 mothers). There was a high level of interest in PNT, where over 80 % of parents in all four study groups would want PNT for the majority of the conditions. There was comparatively less interest in TOP for the same conditions (ranging from 5 to 70 % of parents, with mothers of an affected child being most interested). Parents were most likely to be interested in TOP for conditions at the serious end of the continuum. More than half of the participants in each group would consider TOP for anencephaly and quadriplegia. The interest in PNT and TOP for a range of conditions suggests that rapidly developing PNT technologies are likely to be acceptable in Pakistan, a low-middle income level and Muslim country. The comparatively lower level of interest in TOP for the same conditions highlights ethical dilemmas that such technologies are likely to raise.
    Journal of community genetics 08/2014; 6(1). DOI:10.1007/s12687-014-0198-9
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    ABSTRACT: This paper investigates the willingness of adults with inherited retinal disease to undergo and pay for diagnostic genetic testing in three hypothetical scenarios and to explore the factors that influence decision making. Fifty patients were presented with three scenarios whereby genetic testing provided increasing information: confirming the diagnosis and inheritance pattern alone, providing additional information on future visual function, and identifying in addition a new treatment which could stabilise their condition. Willingness to pay (WTP) was elicited using an iterative bidding game. Regression analysis was used to investigate the probability of agreeing to and paying for testing. Qualitative data were also reviewed to provide a comprehensive understanding of WTP and decision making. The majority of participants agreed to undergo genetic testing in each of the three scenarios. Scenario 2 was the least acceptable with 78% of participants agreeing to genetic testing. The probability of agreeing to genetic testing decreased with age. Between 72 and 96% of participants reported a WTP for genetic testing. Average WTP was £539, £1516, and £6895 for scenarios 1, 2, and 3 respectively. Older participants and participants with higher incomes were willing to pay more for testing. Qualitative data provided additional detail about the rationale behind participants' decisions. The study suggests that patients with inherited retinal disease were willing to undergo and to pay for diagnostic genetic testing, suggesting that they valued the information it may provide. However, several patients preferred not to receive prognostic information and were less willing to pay for genetic testing that yielded such detail.European Journal of Human Genetics advance online publication, 11 June 2014; doi:10.1038/ejhg.2014.111.
    European journal of human genetics: EJHG 06/2014; 23(3). DOI:10.1038/ejhg.2014.111 · 4.23 Impact Factor
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    ABSTRACT: Background Qualitative research is undertaken with randomized controlled trials of health interventions. Our aim was to explore the perceptions of researchers with experience of this endeavour to understand the added value of qualitative research to the trial in practice. Methods A telephone semi-structured interview study with 18 researchers with experience of undertaking the trial and/or the qualitative research. Results Interviewees described the added value of qualitative research for the trial, explaining how it solved problems at the pretrial stage, explained findings, and helped to increase the utility of the evidence generated by the trial. From the interviews, we identified three models of relationship of the qualitative research to the trial. In ‘the peripheral’ model, the trial was an opportunity to undertake qualitative research, with no intention that it would add value to the trial. In ‘the add-on’ model, the qualitative researcher understood the potential value of the qualitative research but it was viewed as a separate and complementary endeavour by the trial lead investigator and wider team. Interviewees described how this could limit the value of the qualitative research to the trial. Finally ‘the integral’ model played out in two ways. In ‘integral-in-theory’ studies, the lead investigator viewed the qualitative research as essential to the trial. However, in practice the qualitative research was under-resourced relative to the trial, potentially limiting its ability to add value to the trial. In ‘integral-in-practice’ studies, interviewees described how the qualitative research was planned from the beginning of the study, senior qualitative expertise was on the team from beginning to end, and staff and time were dedicated to the qualitative research. In these studies interviewees described the qualitative research adding value to the trial although this value was not necessarily visible beyond the original research team due to the challenges of publishing this research. Conclusions Health researchers combining qualitative research and trials viewed this practice as strengthening evaluative research. Teams viewing the qualitative research as essential to the trial, and resourcing it in practice, may have a better chance of delivering its added value to the trial.
    Trials 06/2014; 15(1):215. DOI:10.1186/1745-6215-15-215 · 2.12 Impact Factor
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    ABSTRACT: Researchers sometimes undertake qualitative research with randomised controlled trials (RCTs) of health interventions.
    Health technology assessment (Winchester, England) 06/2014; 18(38):1-198. DOI:10.3310/hta18380 · 5.12 Impact Factor
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    ABSTRACT: The number of routine antenatal visits provided to low risk nulliparous women has been reduced in UK, acknowledging this change in care may result in women being less satisfied with their care and having poorer psychosocial outcomes. The primary aim of the study was to investigate whether the provision of proactive telephone support intervention (TSI) with and without uterine artery Doppler screening (UADS) would reduce the total number of antenatal visits required. A secondary aim was to investigate whether the interventions affected psychological outcomes. A three-arm randomised controlled trial involving 840 low risk nulliparous women was conducted at a large maternity unit in North East England. All women received antenatal care in line with current UK guidance. Women in the TSI group (T) received calls from a midwife at 28, 33 and 36 weeks and women in the telephone and Doppler group (T + D) received the TSI and additional UADS at 20 weeks gestation. The main outcome measure was the total number of scheduled and unscheduled antenatal visits received after 20 weeks gestation. The median number of unscheduled (n = 2.0), scheduled visits (n = 7.0) and mean number of total visits (n = 8.8) were similar in the three groups. The majority (67%) of additional antenatal visits were made to a Maternity Assessment Unit because of commonly occurring pregnancy complications. Additional TSI+/-UADS was not associated with differences in clinical outcomes, levels of anxiety, social support or satisfaction with care. There were challenges to the successful delivery of the telephone support intervention; 59% of women were contacted at 29 and 33 weeks gestation reducing to 52% of women at 37 weeks. Provision of additional telephone support (with or without UADS) in low risk nulliparous women did not reduce the number of unscheduled antenatal visits or reduce anxiety. This study provides a useful insight into the reasons why this client group attend for unscheduled visits.Trial registration: ISRCTN62354584.
    BMC Pregnancy and Childbirth 03/2014; 14(1):121. DOI:10.1186/1471-2393-14-121 · 2.15 Impact Factor
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    ABSTRACT: There is growing recognition of the value of conducting qualitative research with trials in health research. It is timely to reflect on how this qualitative research is presented in grant proposals to identify lessons for researchers and research commissioners. As part of a larger study focusing on how to maximise the value of undertaking qualitative research with trials, we undertook a documentary analysis of proposals of funded studies. Using the metaRegister of Controlled Trials (mRCT) database we identified trials funded in the United Kingdom, ongoing between 2001 and 2010, and reporting the use of qualitative research. We requested copies of proposals from lead researchers. We extracted data from the proposals using closed and open questions, analysed using descriptive statistics and content analysis respectively. 2% (89/3812) of trials in the mRCT database described the use of qualitative research undertaken with the trial. From these 89 trials, we received copies of 36 full proposals, of which 32 met our inclusion criteria. 25% used less than a single paragraph to describe the qualitative research. The aims of the qualitative research described in these proposals focused mainly on the intervention or trial conduct. Just over half (56%) of the proposals included an explicit rationale for conducting the qualitative research with the trial, the most frequent being to optimise implementation into clinical practice or to interpret trial findings. Key information about methods, expertise and resources was missing in a large minority of proposals, in particular sample size, type of analysis, and non-personnel resources. 28% specifically stated that qualitative researchers would conduct the qualitative research. Our review of proposals of successfully funded studies identified good practice but also identified limited space given to describing the qualitative research, with an associated lack of attention to the rationale for doing the qualitative research and important methodological details. Acknowledging the space restrictions faced by researchers writing grant proposals, we suggest a starting point for providing practical guidance to help researchers write proposals and research commissioners assess proposals of qualitative research with trials.
    BMC Medical Research Methodology 02/2014; 14(1):24. DOI:10.1186/1471-2288-14-24 · 2.17 Impact Factor
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    ABSTRACT: The arrival of personalized medicine in the clinic means that treatment decisions will increasingly rely on test results. The challenge of limited healthcare resources means that the dissemination of these technologies will be dependent on their value in relation to their cost, i.e., their cost effectiveness. Phelps and Mushlin have described how to optimize tests to meet a cost-effectiveness target. However, when tests are applied repeatedly the case mix of the patients tested changes with each administration, and this impacts upon the value of each subsequent test administration. In this article, we present a modification of Phelps and Mushlin's framework for diagnostic tests; to identify the cost-effective cut-off for monitoring tests. Using the Ca125 test monitoring for relapse in ovarian cancer, we show how the repeated use of the initial cut-off can lead to a substantially increased false-negative rate compared with the monitoring cut-off-over 4 % higher than in this example-with the associated harms for individual and population health.
    PharmacoEconomics 02/2014; 32(4). DOI:10.1007/s40273-014-0134-1 · 3.34 Impact Factor
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    ABSTRACT: Advances in sequencing technology and the movement of genetic testing into all areas of medicine will increase opportunities for molecular confirmation of a clinical diagnosis. For health-care professionals without formal genetics training, there is a need to know what patients understand about genetics and genetic testing and their information needs and preferences for the disclosure of genetic testing results. These topics were explored during face-to-face interviews with 50 adults with inherited retinal disease, selected in order to provide a diversity of opinions. Participants had variable understanding of genetics and genetic testing, including basic concepts such as inheritance patterns and the risk to dependents, and many did not understand the term 'genetic counselling'. Most were keen for extra information on the risk to others, the process for genetic testing and how to share the information with other family members. Participants were divided as to whether genetic testing should be offered at the time of the initial diagnosis or later. Many would prefer the results to be given by face-to-face consultation, supplemented by further information in a format accessible to those with visual impairment. Health-care professionals and either leaflets or websites of trusted agencies were the preferred sources of information. Permission should be sought for disclosure of genetic information to other family members. The information needs of many patients with inherited retinal disease appear to be unmet. An understanding of their information needs and preferences is required to help health-care professionals provide optimal services that meet patient expectations.European Journal of Human Genetics advance online publication, 8 January 2014; doi:10.1038/ejhg.2013.296.
    European journal of human genetics: EJHG 01/2014; 22(9). DOI:10.1038/ejhg.2013.296 · 4.23 Impact Factor
  • Health technology assessment (Winchester, England) 01/2014; 18(38). · 5.12 Impact Factor
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    ABSTRACT: Availability and accuracy of genetic testing in ophthalmology has increased yet the benefits are unclear especially for those conditions where cure or treatments are limited. To explore attitudes to and patients' understanding of possible advantages and disadvantages of genetic testing for inherited retinal disease, we undertook focus groups in three West Yorkshire towns in the UK. Most of our participants had retinitis pigmentosa and one of the focus groups consisted of participants from (British) Asian ethnic background. Here, we report only those attitudes which were common in all three focus groups. Some of the attitudes have already been reported in the literature. Novel findings include attitudes held towards informed choice and life planning, particularly among more severely affected participants. For example, participants appreciated that genetic testing increases informed choice and enables life planning, but these understandings tended to be in a specific sense: informed choice whether to have children and family planning in order to prevent illness recurrence. We conclude that even though these patients are not a homogeneous group, their attitudes tend to be underpinned by deep anxiety of passing their visual impairment onto their children. In this respect, they differ importantly from a small minority of the deaf who would prefer to have children with hearing loss, and from the more general population who do not believe that blindness is a "severe" enough disability to warrant avoiding having children.
    Journal of community genetics 12/2013; DOI:10.1007/s12687-013-0176-7
  • Trials 11/2013; 14(Suppl 1):P14. DOI:10.1186/1745-6215-14-S1-P14 · 2.12 Impact Factor
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    Trials 11/2013; 14(Suppl 1):O106. DOI:10.1186/1745-6215-14-S1-O106 · 2.12 Impact Factor
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    ABSTRACT: Objective: To evaluate the acceptability, test–retest reliability and validity of the Longer-term Unmet Needs after Stroke monitoring tool. Design: A questionnaire pack was posted to stroke survivors living at home three or six months after stroke. A second pack was sent two weeks after receipt of the completed first pack. Setting : Stroke survivors living at home across England. Subjects: Stroke survivors were recruited from 40 hospitals across England, in two phases. The first with an optimal cohort of patients, the second to capture a broader post-stroke population, including those with communication and/or cognitive difficulties. Patients were excluded if they required palliative care or if permanent discharge to a nursing or residential home was planned. Main measures: The questionnaire pack included the Longer-term Unmet Needs after Stroke tool, General Health Questionnaire-12, Frenchay Activities Index, and Short Form-12. Results: Interim analysis of phase 1 data ( n = 350) indicated that the tool was sufficiently robust to progress to phase 2 ( n = 500). Results are reported on the combined study population. Of 850 patients recruited, 199 (23%) had communication and/or cognitive difficulties. The median age was 73 years (range 28–98). Questionnaire pack return rate was 69%. For the new tool, there was 3.5% missing data and test–retest reliability was moderate to good (percentage item agreement 78–99%, kappa statistic 0.45–0.67). Identification of an unmet need was consistently associated with poorer outcomes on concurrent measures. Conclusions: The Longer-term Unmet Needs after Stroke tool is acceptable, reliable, can be self- completed, and used to identify longer-term unmet needs after stroke.
    Clinical Rehabilitation 10/2013; 27(11):1020. DOI:10.1177/0269215513487082 · 2.24 Impact Factor
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    ABSTRACT: Cystic fibrosis (CF) is one of the most common life-threatening genetically inherited conditions and prenatal screening for CF is available in many countries. Genetic counsellors and other health professionals are expected to provide information about the condition in a way that facilitates personal decision making. Knowing what information to deliver about complex genetic conditions to support informed screening decisions can be challenging for health professionals. To solicit views from those with personal experience with CF on which aspects of the condition they consider most important to include in prenatal screening materials. Q-methodology; an approach to systematically explore variations in viewpoint that combines factor analytic techniques with qualitative approaches to pattern interpretation. Setting and Participants: Twelve adults with CF and 18 parents of affected children were recruited from a regional centre in the UK. Five distinct viewpoints on the items most and least important to include in screening information were identified: Factor 1 the normality of life with CF and increasing life expectancy; Factor 2 the hardships and reduced lifespan. Factor 3 medical interventions and the importance of societal support. Factor 4 longer-term consequences of CF. Factor 5 the ability to adjust to the condition. The identification of five different views on what represented the most and least important information to include about CF highlights the challenge of portraying a complex genetic condition in a balanced and accurate manner. Novel ways in which Q-methodology findings can be used to meet this challenge are presented.
    Health expectations: an international journal of public participation in health care and health policy 08/2013; DOI:10.1111/hex.12113 · 2.85 Impact Factor
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    ABSTRACT: Background: Cystic fibrosis (CF) is one of the most common life threatening genetically inherited conditions and prenatal screening for CF is available in many countries. Genetic counsellors and other health professionals are expected to provide information about the condition in a way that facilitates personal decision making. Knowing what information to deliver about complex genetic conditions to support informed screening decisions can be challenging for health professionals. Objective To solicit views from those with personal experience with CF on which aspects of the condition they consider most important to include in prenatal screening materials. Methods Q-methodology; an approach to systematically explore variations in viewpoint that combines factor analytic techniques with qualitative approaches to pattern interpretation. Setting and Participants: Twelve adults with CF and 18 parents of affected children were recruited from a regional centre in the UK. Results: Five distinct viewpoints on the items most and least important to include in screening information were identified: Factor 1 the normality of life with CF and increasing life expectancy; Factor 2 the hardships and reduced lifespan. Factor 3 medical interventions and the importance of societal support. Factor 4 longer-term consequences of CF. Factor 5 the ability to adjust to the condition. Discussion: The identification of five different views on what represented the most and least important information to include about CF highlights the challenge of portraying a complex genetic condition in a balanced and accurate manner. Novel ways in which Q-methodology findings can be used to meet this challenge are presented.
    Health Expectations 07/2013; · 2.85 Impact Factor

Publication Stats

3k Citations
408.80 Total Impact Points

Institutions

  • 1994–2015
    • University of Leeds
      • • Leeds Institute of Health Sciences (LIHS)
      • • School of Medicine
      • • Division of Reproduction and Early Development
      Leeds, England, United Kingdom
  • 2011
    • The University of York
      • Department of Health Sciences
      York, ENG, United Kingdom
  • 2007
    • King Faisal Specialist Hospital and Research Centre
      • Department of Genetics
      Jeddah, Mintaqat Makkah, Saudi Arabia
  • 1998
    • University of Birmingham
      • Department of Public Health, Epidemiology and Biostatistics
      Birmingham, England, United Kingdom