Narelle Warren
Monash University, School of Social Sciences, Faculty Member
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- Associate Professor in Anthropology and Sociology, with an interest in Ageing, Disability, Chronicity and, more recen... moreAssociate Professor in Anthropology and Sociology, with an interest in Ageing, Disability, Chronicity and, more recently, new and emerging technologies that are concerned with these bodily states. I am primarily interested in lived experiences of neurodegenerative conditions. My most recent project is concerned with heritable genetic modification, with colleagues from Bioethics, Law and Philosophy.edit
Additional file 1. Legislation analysed.
In this chapter, we aim to explore the intersubjectivity inherent in practices of care, by looking at how people care with rather than simply for, each other. Our focus is on what happens when different perspectives about the desired good... more
In this chapter, we aim to explore the intersubjectivity inherent in practices of care, by looking at how people care with rather than simply for, each other. Our focus is on what happens when different perspectives about the desired good life come in contact and need to interact with each other. Using empirical data on the experiences of people living with neurodegenerative diseases in Australia and the UK, we argue that care and the choices associated with it happen between people; they are created through negotiations, compromises and conflicts, and both inform and are informed by ‘what should be done’ and ‘who knows best’. The examination of care calls for an ethnography that is sensitive to the fluid and contextual nature of people’s desires.
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Research Interests: Psychology, Artificial Intelligence, Addiction, Australia, Sociology of Health, and 14 moreDrugs And Alcohol, Medicine, Affordances, Drug Policy, Alcohol and drug treatment, Chatbots, Psychological Intervention, Affordance, Chatbot, Sociology of Drugs and Alcohol, Counselling, Psychology and Cognitive Sciences, Medical and Health Sciences, and Referral
Following stroke, individuals require ongoing screening, diagnosis and monitoring for cognitive impairment. Services and policies around these vary widely between settings, and reports from many countries highlight persistent... more
Following stroke, individuals require ongoing screening, diagnosis and monitoring for cognitive impairment. Services and policies around these vary widely between settings, and reports from many countries highlight persistent under-diagnosis of cognitive impairment in the months and years after stroke. Missed and delayed diagnosis of post-stroke cognitive impairment, including dementia, are important factors in shaping the experiences of people so affected and their family members, especially in low- and middle-income countries. Drawing upon ethnographic research conducted in Malaysia, this article draws upon three case studies to examine the continued health-seeking behaviour after the appearance of salient cognitive and behavioural symptoms that occurred after stroke. Findings highlight the challenges in getting formal diagnostic clarity for cognitive and behavioural symptoms in a rural setting within a middle-income country. No study participants sought help for memory or cogniti...
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Background: The state of palliative care research is closely linked to the development of palliative care services in a country or region. Objective: To systematically review the current state of palliative care research in the Asia... more
Background: The state of palliative care research is closely linked to the development of palliative care services in a country or region. Objective: To systematically review the current state of palliative care research in the Asia Pacific region and analyze its relationship with the performance of each country in the region on the Economist Intelligence Unit's 2015 Quality of Death Index. Design: Systematic review and bibliographic analysis in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocol 2015 (PRISMA-P). Data Sources: The PubMed/MEDLINE, EMBASE, SCOPUS, CINAHL, and PsychiNFO databases were searched on February 4, 2018. Results: One thousand six hundred sixty-seven articles were reviewed. Eighteen out of 32 countries in the region published research. Around 74.15% (1236) of the articles were produced by high-income countries. Research output (articles per 1 m population) was closely linked to country performance on the Economist Intelligence Unit's 2015 Quality of Death Index (adjusted R2 = 0.85). Palliative care research in the region is overwhelmingly focused on cancer (80.13% of articles reviewed). The most common themes of research were "palliative care service (24.45%)" and "clinical" (15.38%). Conclusions: Palliative care research in the region is growing but remains largely centered on the high-income countries, with many low- and middle-income countries having little published research output. Much work is required to drive research in these countries to generate the evidence required for the development of palliative care services. The emphasis on cancer in research also indicates that the needs of patients suffering from noncancer-related diseases may be neglected.
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People living with Parkinson’s disease (PWPD) in rural areas have limited access to local condition-specific care. This paper examines the healthcare preferences of PWPD living in rural areas and how a community-driven initiative to... more
People living with Parkinson’s disease (PWPD) in rural areas have limited access to local condition-specific care. This paper examines the healthcare preferences of PWPD living in rural areas and how a community-driven initiative to employ a movement disorder nurse (MDN) functioned to address barriers to health services access. A qualitative design facilitated an understanding of how interactions with the health system shaped PWPD and their carer’s experiences of living in a regional community. A total of 42 semi-structured interviews were conducted 6–9 months apart; 19 interviews with PWPD and 23 dyadic interviews. The findings support the contention that specialist care can be effectively delivered through allied health professionals in some settings. In particular, having access to a specialist MDN can cushion the effects of living with Parkinson’s disease in regional and rural areas where continuity of care and access to timely support is often difficult for people to find. The ...
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Cognitive remediation (CR) is a promising method of improving cognitive functioning in people with schizophrenia. Nevertheless, the lived experience of participation, and whether this differs from computer game (CG) playing control... more
Cognitive remediation (CR) is a promising method of improving cognitive functioning in people with schizophrenia. Nevertheless, the lived experience of participation, and whether this differs from computer game (CG) playing control conditions, remains poorly understood. This study aimed to qualitatively compare the experience of participating in these 2 interventions. Forty-two outpatients with schizophrenia or schizoaffective disorder completed a qualitative survey with 7 open-ended questions after completing 10 weeks of CR ( = 22) or CG ( = 20). An iterative and inductive thematic analysis was used to identify and tally reoccurring codes and facilitate their organization into overarching themes. Four high-order themes summarized the data: (a) Perceived benefits; (b) Experience of group; (c) Operation of group; and (d) Suggestions for improvement. Participation was described as enjoyable with similar levels of social and intrinsic benefits reported by study completers in both CR an...
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Deep brain stimulation (DBS) is an effective treatment for the debilitating motor symptoms of Parkinson's disease and other neurological disorders. However, clinicians and commentators have noted that DBS recipients have not... more
Deep brain stimulation (DBS) is an effective treatment for the debilitating motor symptoms of Parkinson's disease and other neurological disorders. However, clinicians and commentators have noted that DBS recipients have not necessarily experienced the improvements in quality of life that would be expected, due in large part to what have been described as the 'psychosocial' impacts of DBS. The premise of this paper is that, in order to realise the full potential of DBS and similar interventions, clinical services need to be arranged in such a way that these psychosocial dimensions are recognised and managed. Our starting point is that the psychosocial effects of DBS 'in the field' present us with analytically-useful disruptions: they disturb and foreground deeply held assumptions relating to the individual, health and its treatment, and which in a crude form manifest as the myth of technological solutionism within health care. Drawing on scholarship in medical so...
Research Interests: Medical Sociology, Psychology, Philosophy, Medical Law, Deep Brain Stimulation, and 10 morePersonhood, Neuroethics, Medicine, science and technology studies (STS), Psychosocial, Empirical Ethics, Scholarship, Public health systems and services research, Parkinson´s Disease, and Chronic Illness and long term care
Memory impairment is common following stroke. Memory skills groups (MSGs) utilising compensatory strategies and computerised cognitive training (CCT) are two rehabilitation approaches available to improve memory function; however, there... more
Memory impairment is common following stroke. Memory skills groups (MSGs) utilising compensatory strategies and computerised cognitive training (CCT) are two rehabilitation approaches available to improve memory function; however, there is no consensus as to which is more effective following stroke. This study aimed to explore and contrast the qualitative experiences of 20 stroke survivors (M = 61.90, SD = 10.48, range: 34-77 years) who received six weeks' training in MSG (manualised memory skills group, n = 10) or individual-CCT (Lumosity, n = 10). Using semi-structured interviews, data were collected and analysed thematically, adopting a critical realist approach. Six themes were identified: (1) Facilitators and barriers to intervention engagement, (2) Improving knowledge and understanding, (3) Connecting with others, (4) Perception of the intervention, (5) Impact on everyday memory and (6) Impact on emotions and sense of purpose. Encouragingly, most participants valued and en...
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Online personalized genetic testing services offer accessible and convenient options for satisfying personal curiosity about health and obtaining answers about one's genetic provenance. They are especially attractive to healthy people... more
Online personalized genetic testing services offer accessible and convenient options for satisfying personal curiosity about health and obtaining answers about one's genetic provenance. They are especially attractive to healthy people who wish to learn about their future risk of disease, as Paul Mason's (2017) case study of "Jordan" illustrates. In this response, we consider how online genetic testing services are used by people diagnosed with a common neurodegenerative disease, Parkinson's disease, to gain a sense of certainty regarding the future.
Research Interests: Psychology, Law, Applied Ethics, Medical Law, Medicine, and 3 moreCuriosity, Genetic Testing, and Disease
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Background The COVID-19 pandemic has uncovered the ways in which disabled people are made more vulnerable due to structural inequalities. These vulnerabilities are the result of the interaction between individual and structural factors... more
Background The COVID-19 pandemic has uncovered the ways in which disabled people are made more vulnerable due to structural inequalities. These vulnerabilities are the result of the interaction between individual and structural factors that shape how risk is experienced by disabled people. In Australia, these vulnerabilities are influenced by the way disability services and care for disabled people are delivered through a consumer-directed approach. We analysed the policies and documentation made by the Australian Government and state and territory governments during the pandemic to explore whether these were disability-inclusive. We aimed to unpack how these policies shaped disabled people as vulnerable citizens. Methods Guided by documentary research, we used framework analysis to examine the policies of the Australian Government and state and territory governments. We analysed legislation that was given royal assent by the federal, state and territory governments, and documents (...
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Supplemental material, Supp_Demographic_Information for "He's Back so I'm Not Alone": The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson's Disease by Cassandra J. Thomson,... more
Supplemental material, Supp_Demographic_Information for "He's Back so I'm Not Alone": The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson's Disease by Cassandra J. Thomson, Rebecca A. Segrave, Eric Racine, Narelle Warren, Dominic Thyagarajan and Adrian Carter in Qualitative Health Research
Supplemental material, Supp_Interview_Schedules for "He's Back so I'm Not Alone": The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson's Disease by Cassandra J. Thomson, Rebecca... more
Supplemental material, Supp_Interview_Schedules for "He's Back so I'm Not Alone": The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson's Disease by Cassandra J. Thomson, Rebecca A. Segrave, Eric Racine, Narelle Warren, Dominic Thyagarajan and Adrian Carter in Qualitative Health Research
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Submission to the Australian Senate Standing Committee on Community Affairs Inquiry into the Science of Mitochondrial Donation and Other Matters, held in 2018. Research arising from ARC funded project, DP170100919 Legal and Ethical Issues... more
Submission to the Australian Senate Standing Committee on Community Affairs Inquiry into the Science of Mitochondrial Donation and Other Matters, held in 2018. Research arising from ARC funded project, DP170100919 Legal and Ethical Issues in the Inheritable Genetic Modification of Humans
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Submission to Independent Review of the Human Reproductive Technology Act 1991 and the Surrogacy Act 2008, Western Australian Department of Health, held in 2018. Research arises from ARC funded project, DP170100919 Legal and ethical... more
Submission to Independent Review of the Human Reproductive Technology Act 1991 and the Surrogacy Act 2008, Western Australian Department of Health, held in 2018. Research arises from ARC funded project, DP170100919 Legal and ethical issues in the inheritable genetic modification of humans.
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In this article, we explore the ways in which a man with motor neurone disease, Gareth, and his wife and carer, Maggie, enact different temporal orientations, when the expected future, an early death, does not arrive. We attend to the... more
In this article, we explore the ways in which a man with motor neurone disease, Gareth, and his wife and carer, Maggie, enact different temporal orientations, when the expected future, an early death, does not arrive. We attend to the tensions between everyday priorities and uncertain futures to discuss the ways Gareth and Maggie negotiate action to deal with problems that are yet to come, but, despite this, already matter. We argue that prognosis thrusts people towards multiple presents and futures; while the future is fixed in time through prognosis and repaired through present action, it is also unfixed as lived experience unfolds over time. What emerges is a dialogue between multiple futures, pre-determined and uncertain, and practices that aim to repair the future, even if they cannot do so.
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Jecker and Ko (2017) argue that the concept of narrative identity enhances our understandings of patients' experiences. Narrative analysis, they persuasively argue, has ethical relevance as it high...
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Deep brain stimulation (DBS) for Parkinson’s disease successfully alleviates motor symptoms, but unanticipated changes in personality, self, and relationships can occur. Little is known about how these nonmotor outcomes affect patients... more
Deep brain stimulation (DBS) for Parkinson’s disease successfully alleviates motor symptoms, but unanticipated changes in personality, self, and relationships can occur. Little is known about how these nonmotor outcomes affect patients and families. We prospectively examined the experience and meaning of DBS-related changes in personality and self for patients and caregivers. In-depth, semi-structured interviews were conducted with 22 participants (11 patient–caregiver dyads) before and 9 months after DBS and analyzed using thematic analysis. We identified three themes present prior to DBS that reflected a time of anticipation, while three themes present after DBS reflected a process of adjustment. Participants noted both positive and negative personality changes, with some, but not all, attributing them to the stimulation. The risk of stimulation-related personality change should be weighed against the procedure’s motor benefits and considered in the context of disease- and medicat...
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ABSTRACT Primary Objective This study explored the sibling relationship across the lifespan after acquired brain injury (ABI). Research Design A qualitative approach was used to explore the perspectives of siblings with ABI and uninjured... more
ABSTRACT Primary Objective This study explored the sibling relationship across the lifespan after acquired brain injury (ABI). Research Design A qualitative approach was used to explore the perspectives of siblings with ABI and uninjured siblings. Methods and Procedures Semi-structured interviews with 19 siblings with ABI and 20 uninjured siblings (aged 6–61 years) were analyzed using reflexive thematic analysis. Main Outcomes and Results Four themes were identified: Living with ABI; Being normal siblings; Being part of a family; Experiencing social stigma of ABI. ABI was a traumatic event which differentiated siblings but increased understanding helped accommodate its impact. This impact was experienced within perceptions of typical sibling relationships as involving closeness and conflict. The family context shaped relationships, with parents mediating across the lifespan, while siblings’ partners and children contributed to adult sibling relationships. Finally, social stigma led to distance but also protectiveness between siblings. Conclusions The sibling relationship was experienced as a continually evolving source of closeness and conflict within the family context. ABI enhanced preexisting dynamics and created new dynamics, shaped by social attitudes toward ABI. Increased understanding of ABI supported closer relationships, highlighting a need for psychoeducational interventions across the lifespan.
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Research Interests: General Practice, Focus Groups, Health Policy, Medicine, Humans, and 15 moreFemale, Male, Patient Satisfaction, Clinical Sciences, Aged, Middle Aged, Adult, Public health systems and services research, Sex Factors, Age Factors, Preventive Health Services, Socioeconomic Factors, Health Services Accessibility, Delivery of Health Care, and mass Screening
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ObjectivesThe aim of this study was to explore the barriers to accessing cancer services faced by adults with pre-existing physical disabilities.DesignCross-sectional, exploratory qualitative study. Data were collected by semistructured... more
ObjectivesThe aim of this study was to explore the barriers to accessing cancer services faced by adults with pre-existing physical disabilities.DesignCross-sectional, exploratory qualitative study. Data were collected by semistructured interviews and analysed thematically.SettingParticipants were recruited through statutory and third sector organisations in England and Wales between October 2017 and October 2018.Participants18 people with a diagnosis of cancer and a pre-existing physical disability.ResultsThe findings illustrate that people with physical disabilities in England and Wales face a variety of barriers to accessing cancer services. The overall theme that emerged was that participants experienced a lack of attitudinal and institutional preparation both from healthcare professionals and healthcare facilities. This overall theme is illustrated through three subthemes: lack of acknowledgment of disability, unseeing disability and physical inaccessibility.ConclusionsAs the p...
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Multiple sclerosis is thought to be relatively uncommon in the Asia Pacific region with prevalence estimated between 0 and 20 per 100,000. There is reason to doubt these estimates due to the lack of data from many countries and the... more
Multiple sclerosis is thought to be relatively uncommon in the Asia Pacific region with prevalence estimated between 0 and 20 per 100,000. There is reason to doubt these estimates due to the lack of data from many countries and the growing evidence of variability in prevalence across small geographic areas. This study was conducted to systematically review the population prevalence, incidence, mortality and disability progression estimates of MS within the Asia Pacific region. The systematic review was conducted on articles from 1985 till 31st July 2017 within the PubMed/MEDLINE, EMBASE, SCOPUS, and The Cochrane Library databases. The review included articles that were population-based studies conducted on patients with MS in the Asia Pacific region that reported either incidence, prevalence, mortality, or disease progression. Hospital-based studies and non-research articles were excluded to ensure that only information representative of the population was included for analysis. Dat...
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Increasing physical activity (PA) among people with severe traumatic brain injury (TBI) represents an important long-term rehabilitation goal. To design effective interventions to promote PA, the factors associated with PA engagement... more
Increasing physical activity (PA) among people with severe traumatic brain injury (TBI) represents an important long-term rehabilitation goal. To design effective interventions to promote PA, the factors associated with PA engagement post-TBI need to be understood. A qualitative study design was employed to investigate the factors influencing PA engagement in people with severe TBI living in the community. Face-to-face interviews were conducted with eight people with severe TBI three to five years post-injury. A constant comparative method of data collection and analysis was adopted. Interviews were analysed using thematic analysis. Three themes were identified: continuance of self and PA (perception of self, stage of life, and PA normality), beliefs about PA (knowledge of PA and associated benefits), and purpose of PA engagement (reasons for being physically active). Lifelong PA habits and current life priorities impacted on PA engagement post-TBI and influenced whether TBI-associa...
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The Heads Together organisation provides a weekend camping programme for children with an acquired brain injury (ABI) and their families. Utilising a qualitative approach, this study explored family experiences of the Heads Together Camp... more
The Heads Together organisation provides a weekend camping programme for children with an acquired brain injury (ABI) and their families. Utilising a qualitative approach, this study explored family experiences of the Heads Together Camp (HTC) from the perspective of parents. Semi-structured interviews were conducted with 11 parents who had attended the camp. Thematic analysis identified six themes: ABI and the family; Apprehension and discomfort; Connections and community; Hope and perspective; Fun, relaxation and respite; and Family functioning. Families experienced initial feelings of apprehension at camp, which attenuated as connections developed between camp attendees. These connections were grounded in shared experiences of ABI and enabled families to become part of an accepting community, feel less alone and share information. The camp environment also facilitated fun and relaxation, provided families with hope and perspective, and led to improvements in family relationships....
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Parkinson's disease prevalence has been associated with rurality and pesticide use in studies throughout the world. Here, Parkinson's disease (PD) medication usage was used to estimate prevalence in 79 urban and rural localities... more
Parkinson's disease prevalence has been associated with rurality and pesticide use in studies throughout the world. Here, Parkinson's disease (PD) medication usage was used to estimate prevalence in 79 urban and rural localities in Victoria, Australia (5.3 million people). An ecological study design was used to determine whether PD medication usage, as a reporter of PD diagnosis, differed between 79 regions in Victoria, and whether variance in PD prevalence was associated with population demographics using multiple regression. Cluster formation probability was calculated using Monte Carlo modelling. The association between agricultural production and PD prevalence was conducted with Bonferroni-adjusted Mann-Whitney-U tests. PD prevalence in Victoria was estimated to be 0.85%, which was greater in rural (1.02%) compared to urban (0.80%) locations; a difference that was abolished when corrected for demographic variables. Four of the highest prevalent regions (regardless of cov...
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Child mental health problems are now recognised as a key public health concern. Parenting programs have been developed as one solution to reduce children's risk of developing mental health problems. However, their potential for... more
Child mental health problems are now recognised as a key public health concern. Parenting programs have been developed as one solution to reduce children's risk of developing mental health problems. However, their potential for widespread dissemination is hindered by low parental engagement, which includes intent to enrol, enrolment, and attendance. To increase parental engagement in preventive parenting programs, we need a better understanding of the predictors of engagement, and the strategies that can be used to enhance engagement. Employing a PRISMA method, we conducted a systematic review of the predictors of parent engagement and engagement enhancement strategies in preventive parenting programs. Key inclusion criteria included: (1) the intervention is directed primarily at the parent, (2) parent age >18 years, the article is (3) written in English and (4) published between 2004-2016. Stouffer's method of combining -values was used to determine whether associations ...
Research Interests: Psychology and Medicine
Eating disorders are serious psychiatric illnesses that are often associated with poor quality of life and low long-term recovery rates. Peer mentor programs have been found to improve psychiatric symptoms and quality of life in other... more
Eating disorders are serious psychiatric illnesses that are often associated with poor quality of life and low long-term recovery rates. Peer mentor programs have been found to improve psychiatric symptoms and quality of life in other mental illnesses, and a small number of studies have suggested that eating disorder patients may benefit from such programs. The aim of this study is to assess the efficacy of a peer mentor program for individuals with eating disorders in terms of improving symptomatology and quality of life. Up to 30 individuals with a past history of an eating disorder will be recruited to mentor 30 individuals with a current eating disorder. Mentoring will involve 13 sessions (held approximately every 2 weeks), of up to 3 h each, over 6 months. This pilot proof-of-concept feasibility study will inform the efficacy of a peer mentoring program on improving eating disorder symptomatology and quality of life, and will inform future randomised controlled trials. Australi...
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The private space of the home is an important site of health care in most industrialised countries, and rehabilitation following intensive in-hospital treatment largely takes place in domestic settings. Home in this context is implicitly... more
The private space of the home is an important site of health care in most industrialised countries, and rehabilitation following intensive in-hospital treatment largely takes place in domestic settings. Home in this context is implicitly understood by individuals affected by illness (people with illness, family members, friends, carers), health care providers, and policy makers as an a priori entity that naturally provides continuity and stability. This takes for granted that family carers will maintain both therapeutic activities and the sense of ‘being at home’ – and all of the accompanying emotional dimensions – within the home environment. Drawing on ethnographic research with relatively young spousal carers in Victoria, Australia, we explore how the reconstruction of home as a site for post-stroke recovery changed the experiences and meanings given to the idea of home. Home as a therapeutic place depended on constant orchestrating work that reconfigured the physical, symbolic, ...