Bella Vivat | Brunel University (original) (raw)
Papers by Bella Vivat
Palliative medicine, 2017
Being homeless or vulnerably housed is associated with death at a young age, frequently related t... more Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited. To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care. Thematic analysis of data collected using focus groups and interviews. Single homeless people ( n = 28), formerly homeless people ( n = 10), health- and social-care providers ( n = 48), hostel staff ( n = 30) and outreach staff ( n = 10). This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is pall...
BMJ Supportive & Palliative Care, 2016
Oxford Textbook of Spirituality in Healthcare, 2012
Http Dx Doi Org 10 1080 13576270701783058, Jan 18, 2008
Biographical note Bella Vivat is a research lecturer who conducts qualitative research with peopl... more Biographical note Bella Vivat is a research lecturer who conducts qualitative research with people with chronic and/or life-limiting illness, framed by understandings from social studies of scientific, technological and medical knowledge. Currently her main research interests are lay and expert knowledges, and spiritual aspects of health and health care.
Http Dx Doi Org 10 1080 17533010903495306, Feb 22, 2010
Aims: Identity is at risk in chronic fatigue conditions because of physical dysfunction, role los... more Aims: Identity is at risk in chronic fatigue conditions because of physical dysfunction, role loss, and stigmatisation. This qualitative study explored the meanings of leisure-based art-making for women living with CFS/ME, in relation to preserving and promoting positive identities.
BMC palliative care, Jan 2, 2006
Palliative care has been proposed to help meet the needs of patients who suffer progressive non-c... more Palliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. We report here a novel protocol for the evaluation of a new palliative care service in this context. Using the MRC Framework for the Evaluation of Complex Interventions we modelled a new palliative care and neurology service for patients severely affected by Multiple Sclerosis (MS). We conducted qualitative interviews with patients, families and staff, plus a literature review to model and pilot the service. Then we designed a delayed intervention randomised controlled trial to test its effectiveness as part of phase II of the MRC framework. Inclusion criteria for the trial were patients identified by referring clinicians as having unresolved symptoms or psychological concerns. Referrers were advised to use a score of greater than 8 on the Expanded Disability Scale was a benchmark. Consenting patient...
When designing for people with disabilities, it is essential for the designer to understand the u... more When designing for people with disabilities, it is essential for the designer to understand the user. This paper reports on a pilot study of bringing together design students and people with Multiple Sclerosis (MS), which explored the effect of such an experience on design students' understanding of the issues relating to design for people with MS. Seven students studying design participated in the study. They worked with two people with MS and one student studying Occupational Therapy for two days, and proposed two design concepts: a speech aid and a foot support. To test the students' knowledge about designing for people with MS and to find out whether their understanding increased after the project, they were asked to complete a questionnaire before starting the project and again after finishing it. The students were also asked to take part in interviews to reflect on their experience of the project. They highly valued the project, especially the experience of working with end users: they were motivated and inspired by the two people with MS, focusing on solving real, practical problems using the principles of inclusive design. Bringing people from different backgrounds/disciplines into the design process therefore seems to enrich design students' experience, and result in more thoughtful and inclusive design solutions. The implications for design educators are to help students share learning and develop the skills of working with real users.
BMJ Supportive & Palliative Care, 2014
ABSTRACT http://spcare.bmj.com/content/4/1/109.3.abstract Spiritual care and spiritual wellbeing ... more ABSTRACT http://spcare.bmj.com/content/4/1/109.3.abstract Spiritual care and spiritual wellbeing (SWB) are central to palliative care, but no measures of SWB have yet been developed cross-culturally. In 2002 the EORTC Quality of Life (QL) Group began international development of an SWB measure for palliative patients. Three domains of SWB were initially hypothesised, and items developed accordingly. Data for Phase IV field-testing and validation of the measure were collected from January 2012 to July 2013. Participants completed the 36-item provisional SWB measure and a structured debriefing interview. EORTC QLQ-C15-PAL, socio-demographic and clinical data were also collected, and a sub-set of test-retest data. The scale structure was assessed using Principal Component Analysis (PCA) and Rasch analysis and further validity explored using known group comparisons. 458 patients from 14 countries took part; 188 Christian, 50 Muslim, 23 Buddhist, and 158 with no religion. All items showed good score distribution. 275 patients (60%) found no items problematic, but small percentages indicated difficulties with 6 items. Combining patient feedback with PCA and Rasch analysis led to deletion of a few items. Four distinct domains explain 53% of the variance. No remarkable differential item functioning (DIF) was found for age, sex, geographical region or belief in God. Goodness of fit measures were within guidelines. Global SWB correlated weakly with global QL. This EORTC measure of SWB is available for use in palliative care research and practice, and has both measurement and intervention characteristics. Future studies will specifically recruit people in minority religious and/or ethnic communities under-represented in this already diverse sample.
Palliative Medicine, 2013
No existing stand-alone measures of spiritual wellbeing have been developed in cross-cultural and... more No existing stand-alone measures of spiritual wellbeing have been developed in cross-cultural and multiple linguistic contexts. Cross-cultural development of a stand-alone European Organisation for Research and Treatment of Cancer (EORTC) measure of spiritual wellbeing for palliative care patients with cancer. Broadly following EORTC Quality of Life Group (QLG) guidelines for developing questionnaires, the study comprised three phases. Phase I identified relevant issues and obtained the views of palliative care patients and professionals about those issues. Phase II operationalised issues into items. Phase III pilot-tested those items with palliative care patients. Amendments to the guidelines included an intermediate Phase IIIa, and debriefing questions specific to the measure. Phase III pilot-testing recruited 113 people with incurable cancer from hospitals and hospices in six European countries and Japan. A provisional 36-item measure ready for Phase IV field-testing, the EORTC QLQ-SWB36, has been developed. Careful attention to translation and simultaneous development in multiple languages means items are acceptable and consistent between different countries and languages. Phase III data from 113 patients in seven countries show that the items are comprehensible across languages and cultures. Phase III patient participants in several countries used the measure as a starting point for discussing the issues it addresses. The EORTC QLG's rigorous cross-cultural development process ensures that the EORTC QLQ-SWB36 identifies key issues for spiritual wellbeing in multiple cultural contexts, and that items are comprehensible and consistent across languages. Some cross-cultural differences were observed, but data were insufficient to enable generalisation. Phase IV field-testing will investigate these differences further.
Multiple Sclerosis, 2004
Although there is increasing interest in measuring the quality of life (QoL) of people with multi... more Although there is increasing interest in measuring the quality of life (QoL) of people with multiple sclerosis (MS), relatively little is known about the issues of importance to people severely affected by MS. In the first of two systematic reviews, we searched the literature to identify measures that have been used to assess health-related QoL in people with MS, and described their measurement properties in terms of validity, reliability, responsiveness to change, and appropriateness for QoL assessment in people severely affected by MS. In the second review, we identified care domains important to people with MS, by reviewing survey, focus group and interview studies involving people with MS and/or their caregivers. Forty-six studies evaluating 12 disease-specific and ten generic QoL measures for patients, and one disease-specific measure for caregivers, satisfied all inclusion criteria. Sixteen focus group or interview studies and 51 questionnaire-based studies evaluated domains of care important to people with MS, and seven qualitative and 11 questionnaire-based studies assessed domains of care important to their caregivers. From these studies, we identified 15 domains of care important to people with MS and 12 domains important to caregivers. QoL measures differed markedly in their coverage of these care domains. Moreover, each measure fulfilled some but not all criteria of validity, reliability, responsiveness, and appropriateness. Further work is needed to clarify the domains of care relevant to people with severe MS, and to measure health-related QoL in this population.
Multiple Sclerosis Journal, 2010
Multiple sclerosis results in both physical and psychological disability but some patients have n... more Multiple sclerosis results in both physical and psychological disability but some patients have needs that are not adequately met by existing services. Our objective was to explore whether a new palliative care service improved outcomes for people severely affected by multiple sclerosis. A delayed intervention randomized controlled trial was undertaken with multiple sclerosis patients deemed by staff to have palliative care needs. The intervention was a multiprofessional palliative care team assessment and follow-up. The intervention group was offered the team immediately (fast track, FI); the control group continued best standard care and then offered the team after 3 months (standard intervention, SI). The main outcome measures were: patient reported issues using the Palliative Care Outcome Scale and Multiple Sclerosis Impact Scale at 12 weeks and caregiver burden using the Zarit Burden Inventory. Sixty-nine people were referred to the service; 52 consented or were eligible to be randomized (26 to the FI and 26 to the SI groups). At 12 weeks people in the FI group had an improvement (mean change -1.0) in the total score of 5 key symptoms whereas there was deterioration in the SI group (mean change 1.1, F = 4.75, p = 0.035). There was no difference in the change in general Palliative Care Outcome Scale or Multiple Sclerosis Impact Scale scores. There was an improvement in caregiver burden in the FI group and a deterioration in the SI group (F = 7.60, p = 0.013). Involvement with the palliative care service appeared to positively affect some key symptoms and reduced informal caregiver burden.
Mortality, 2008
Biographical note Bella Vivat is a research lecturer who conducts qualitative research with peopl... more Biographical note Bella Vivat is a research lecturer who conducts qualitative research with people with chronic and/or life-limiting illness, framed by understandings from social studies of scientific, technological and medical knowledge. Currently her main research interests are lay and expert knowledges, and spiritual aspects of health and health care.
European Journal of Cancer Care, 2014
Spiritual well-being is increasingly recognised as an important aspect of patients' quali... more Spiritual well-being is increasingly recognised as an important aspect of patients' quality of life when living with a potentially life-limiting illness such as cancer. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group is developing a measure for assessing spiritual well-being cross-culturally for people receiving palliative care for cancer. The pilot-testing phase of the study explored potential problems related to the content and administration of a provisional version of this measure. The French version was pilot-tested with 12 patients in a palliative and supportive day care unit in Paris. Participants were asked to complete the measure and the EORTC QLQ-C15-PAL before being interviewed about their responses. The administration of the measure enabled participants to express the difficulties and existential concerns they experienced. The items were not considered intrusive, despite the sensitive topic of the measure. This article considers difficulties with items pertaining to 'religion' and 'spirituality' in the context of French culture. Overall, this measure appears to enhance holistic care, by providing caregivers with a means of broaching spirituality issues, a topic otherwise difficult to discuss in the context of palliative care.
Arts & Health, 2010
Aims: Identity is at risk in chronic fatigue conditions because of physical dysfunction, role los... more Aims: Identity is at risk in chronic fatigue conditions because of physical dysfunction, role loss, and stigmatisation. This qualitative study explored the meanings of leisure-based art-making for women living with CFS/ME, in relation to preserving and promoting positive identities.
Palliative medicine, 2017
Being homeless or vulnerably housed is associated with death at a young age, frequently related t... more Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited. To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care. Thematic analysis of data collected using focus groups and interviews. Single homeless people ( n = 28), formerly homeless people ( n = 10), health- and social-care providers ( n = 48), hostel staff ( n = 30) and outreach staff ( n = 10). This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is pall...
BMJ Supportive & Palliative Care, 2016
Oxford Textbook of Spirituality in Healthcare, 2012
Http Dx Doi Org 10 1080 13576270701783058, Jan 18, 2008
Biographical note Bella Vivat is a research lecturer who conducts qualitative research with peopl... more Biographical note Bella Vivat is a research lecturer who conducts qualitative research with people with chronic and/or life-limiting illness, framed by understandings from social studies of scientific, technological and medical knowledge. Currently her main research interests are lay and expert knowledges, and spiritual aspects of health and health care.
Http Dx Doi Org 10 1080 17533010903495306, Feb 22, 2010
Aims: Identity is at risk in chronic fatigue conditions because of physical dysfunction, role los... more Aims: Identity is at risk in chronic fatigue conditions because of physical dysfunction, role loss, and stigmatisation. This qualitative study explored the meanings of leisure-based art-making for women living with CFS/ME, in relation to preserving and promoting positive identities.
BMC palliative care, Jan 2, 2006
Palliative care has been proposed to help meet the needs of patients who suffer progressive non-c... more Palliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. We report here a novel protocol for the evaluation of a new palliative care service in this context. Using the MRC Framework for the Evaluation of Complex Interventions we modelled a new palliative care and neurology service for patients severely affected by Multiple Sclerosis (MS). We conducted qualitative interviews with patients, families and staff, plus a literature review to model and pilot the service. Then we designed a delayed intervention randomised controlled trial to test its effectiveness as part of phase II of the MRC framework. Inclusion criteria for the trial were patients identified by referring clinicians as having unresolved symptoms or psychological concerns. Referrers were advised to use a score of greater than 8 on the Expanded Disability Scale was a benchmark. Consenting patient...
When designing for people with disabilities, it is essential for the designer to understand the u... more When designing for people with disabilities, it is essential for the designer to understand the user. This paper reports on a pilot study of bringing together design students and people with Multiple Sclerosis (MS), which explored the effect of such an experience on design students' understanding of the issues relating to design for people with MS. Seven students studying design participated in the study. They worked with two people with MS and one student studying Occupational Therapy for two days, and proposed two design concepts: a speech aid and a foot support. To test the students' knowledge about designing for people with MS and to find out whether their understanding increased after the project, they were asked to complete a questionnaire before starting the project and again after finishing it. The students were also asked to take part in interviews to reflect on their experience of the project. They highly valued the project, especially the experience of working with end users: they were motivated and inspired by the two people with MS, focusing on solving real, practical problems using the principles of inclusive design. Bringing people from different backgrounds/disciplines into the design process therefore seems to enrich design students' experience, and result in more thoughtful and inclusive design solutions. The implications for design educators are to help students share learning and develop the skills of working with real users.
BMJ Supportive & Palliative Care, 2014
ABSTRACT http://spcare.bmj.com/content/4/1/109.3.abstract Spiritual care and spiritual wellbeing ... more ABSTRACT http://spcare.bmj.com/content/4/1/109.3.abstract Spiritual care and spiritual wellbeing (SWB) are central to palliative care, but no measures of SWB have yet been developed cross-culturally. In 2002 the EORTC Quality of Life (QL) Group began international development of an SWB measure for palliative patients. Three domains of SWB were initially hypothesised, and items developed accordingly. Data for Phase IV field-testing and validation of the measure were collected from January 2012 to July 2013. Participants completed the 36-item provisional SWB measure and a structured debriefing interview. EORTC QLQ-C15-PAL, socio-demographic and clinical data were also collected, and a sub-set of test-retest data. The scale structure was assessed using Principal Component Analysis (PCA) and Rasch analysis and further validity explored using known group comparisons. 458 patients from 14 countries took part; 188 Christian, 50 Muslim, 23 Buddhist, and 158 with no religion. All items showed good score distribution. 275 patients (60%) found no items problematic, but small percentages indicated difficulties with 6 items. Combining patient feedback with PCA and Rasch analysis led to deletion of a few items. Four distinct domains explain 53% of the variance. No remarkable differential item functioning (DIF) was found for age, sex, geographical region or belief in God. Goodness of fit measures were within guidelines. Global SWB correlated weakly with global QL. This EORTC measure of SWB is available for use in palliative care research and practice, and has both measurement and intervention characteristics. Future studies will specifically recruit people in minority religious and/or ethnic communities under-represented in this already diverse sample.
Palliative Medicine, 2013
No existing stand-alone measures of spiritual wellbeing have been developed in cross-cultural and... more No existing stand-alone measures of spiritual wellbeing have been developed in cross-cultural and multiple linguistic contexts. Cross-cultural development of a stand-alone European Organisation for Research and Treatment of Cancer (EORTC) measure of spiritual wellbeing for palliative care patients with cancer. Broadly following EORTC Quality of Life Group (QLG) guidelines for developing questionnaires, the study comprised three phases. Phase I identified relevant issues and obtained the views of palliative care patients and professionals about those issues. Phase II operationalised issues into items. Phase III pilot-tested those items with palliative care patients. Amendments to the guidelines included an intermediate Phase IIIa, and debriefing questions specific to the measure. Phase III pilot-testing recruited 113 people with incurable cancer from hospitals and hospices in six European countries and Japan. A provisional 36-item measure ready for Phase IV field-testing, the EORTC QLQ-SWB36, has been developed. Careful attention to translation and simultaneous development in multiple languages means items are acceptable and consistent between different countries and languages. Phase III data from 113 patients in seven countries show that the items are comprehensible across languages and cultures. Phase III patient participants in several countries used the measure as a starting point for discussing the issues it addresses. The EORTC QLG's rigorous cross-cultural development process ensures that the EORTC QLQ-SWB36 identifies key issues for spiritual wellbeing in multiple cultural contexts, and that items are comprehensible and consistent across languages. Some cross-cultural differences were observed, but data were insufficient to enable generalisation. Phase IV field-testing will investigate these differences further.
Multiple Sclerosis, 2004
Although there is increasing interest in measuring the quality of life (QoL) of people with multi... more Although there is increasing interest in measuring the quality of life (QoL) of people with multiple sclerosis (MS), relatively little is known about the issues of importance to people severely affected by MS. In the first of two systematic reviews, we searched the literature to identify measures that have been used to assess health-related QoL in people with MS, and described their measurement properties in terms of validity, reliability, responsiveness to change, and appropriateness for QoL assessment in people severely affected by MS. In the second review, we identified care domains important to people with MS, by reviewing survey, focus group and interview studies involving people with MS and/or their caregivers. Forty-six studies evaluating 12 disease-specific and ten generic QoL measures for patients, and one disease-specific measure for caregivers, satisfied all inclusion criteria. Sixteen focus group or interview studies and 51 questionnaire-based studies evaluated domains of care important to people with MS, and seven qualitative and 11 questionnaire-based studies assessed domains of care important to their caregivers. From these studies, we identified 15 domains of care important to people with MS and 12 domains important to caregivers. QoL measures differed markedly in their coverage of these care domains. Moreover, each measure fulfilled some but not all criteria of validity, reliability, responsiveness, and appropriateness. Further work is needed to clarify the domains of care relevant to people with severe MS, and to measure health-related QoL in this population.
Multiple Sclerosis Journal, 2010
Multiple sclerosis results in both physical and psychological disability but some patients have n... more Multiple sclerosis results in both physical and psychological disability but some patients have needs that are not adequately met by existing services. Our objective was to explore whether a new palliative care service improved outcomes for people severely affected by multiple sclerosis. A delayed intervention randomized controlled trial was undertaken with multiple sclerosis patients deemed by staff to have palliative care needs. The intervention was a multiprofessional palliative care team assessment and follow-up. The intervention group was offered the team immediately (fast track, FI); the control group continued best standard care and then offered the team after 3 months (standard intervention, SI). The main outcome measures were: patient reported issues using the Palliative Care Outcome Scale and Multiple Sclerosis Impact Scale at 12 weeks and caregiver burden using the Zarit Burden Inventory. Sixty-nine people were referred to the service; 52 consented or were eligible to be randomized (26 to the FI and 26 to the SI groups). At 12 weeks people in the FI group had an improvement (mean change -1.0) in the total score of 5 key symptoms whereas there was deterioration in the SI group (mean change 1.1, F = 4.75, p = 0.035). There was no difference in the change in general Palliative Care Outcome Scale or Multiple Sclerosis Impact Scale scores. There was an improvement in caregiver burden in the FI group and a deterioration in the SI group (F = 7.60, p = 0.013). Involvement with the palliative care service appeared to positively affect some key symptoms and reduced informal caregiver burden.
Mortality, 2008
Biographical note Bella Vivat is a research lecturer who conducts qualitative research with peopl... more Biographical note Bella Vivat is a research lecturer who conducts qualitative research with people with chronic and/or life-limiting illness, framed by understandings from social studies of scientific, technological and medical knowledge. Currently her main research interests are lay and expert knowledges, and spiritual aspects of health and health care.
European Journal of Cancer Care, 2014
Spiritual well-being is increasingly recognised as an important aspect of patients' quali... more Spiritual well-being is increasingly recognised as an important aspect of patients' quality of life when living with a potentially life-limiting illness such as cancer. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group is developing a measure for assessing spiritual well-being cross-culturally for people receiving palliative care for cancer. The pilot-testing phase of the study explored potential problems related to the content and administration of a provisional version of this measure. The French version was pilot-tested with 12 patients in a palliative and supportive day care unit in Paris. Participants were asked to complete the measure and the EORTC QLQ-C15-PAL before being interviewed about their responses. The administration of the measure enabled participants to express the difficulties and existential concerns they experienced. The items were not considered intrusive, despite the sensitive topic of the measure. This article considers difficulties with items pertaining to 'religion' and 'spirituality' in the context of French culture. Overall, this measure appears to enhance holistic care, by providing caregivers with a means of broaching spirituality issues, a topic otherwise difficult to discuss in the context of palliative care.
Arts & Health, 2010
Aims: Identity is at risk in chronic fatigue conditions because of physical dysfunction, role los... more Aims: Identity is at risk in chronic fatigue conditions because of physical dysfunction, role loss, and stigmatisation. This qualitative study explored the meanings of leisure-based art-making for women living with CFS/ME, in relation to preserving and promoting positive identities.