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Bipolar disorder is a chronic mental health condition, which can result in functional impairment despite medication. A large evidence base supports use of psychological therapies and structured care in the treatment of mood disorders, but these are rarely implemented. e-Pathways are digital structures that inform and record patient progress through a healthcare system, although these have not yet been used for bipolar disorder.
To assess the perceived benefits and costs associated with implementing a collaborative NICE-informed e-pathway for bipolar disorder.
Healthcare professionals and people with bipolar disorder attended a workshop to share feedback on e-pathways. Data were collected through questionnaires (n = 26) and transcription of a focus group, analysed qualitatively by a framework analysis.
Patients and healthcare professionals welcomed the development of an e-pathway for bipolar disorder. There were five elements to the framework: quality and delivery of care, patient–clinician collaboration, flexibility and adaptability, impact on staff and impact on healthcare services.
Identification of benefits and costs ensures that future development of e-pathways addresses concerns of healthcare professionals and people with bipolar disorder, which would be essential for successful implementation. Recommendations for this development include making e-pathways less complicated for patients, ensuring sufficient training and ensuring clinicians do not feel their skills become invalidated. Limitations of the study, and directions for future research, are discussed.
This article contends that prior research on the behaviour of Chinese local cadres pays limited attention to their motivation for avoiding blame. Using qualitative data from three field studies conducted in Guangdong province, the study focuses on blame avoidance in the cadre responsibility system, which is recognized as an important instrument for state capacity building. Our analysis uncovers three major discursive strategies used by grassroots cadres to manage blame either before or after it is apportioned: de-legitimating performance standards, re-attributing blame and transferring blame risk. We find that local cadres have a role as blame makers in shifting blame and accusations. This finding challenges the conventional view, which typically sees local officials as blame takers. The article concludes by elaborating on the wider implications of this finding and proposing avenues for future research.
Wine consumption is affected by intertwined needs generated by factors such as production and marketing methods, as well as by the individual's desire for social differentiation in a democratised mass drinking culture. Our study sought to determine whether consumption patterns have changed in the Italian province of Trentino and how such changes may have affected the meaning that wine drinkers living in this area assign to the concept of quality in wine. The paper presents a qualitative study (n=57 interviews) carried out in a wine producing region in north-east Italy. In addition to investigating the changes that have taken place in the area's wine drinking culture, the study also focuses on how consumers perceive and define wine quality. The findings show that economic, political and social factors have brought major changes in drinking culture and consumption over the last 50 years. In addition, changes in the wine industry have had a significant impact on how consumers’ views on wine quality and its key features have evolved. Nevertheless, the study found that some traditional aspects persist in the drinking culture and still determine the perception of quality.
This study uses constructivist grounded theory to explore older women's responses to the unexpected need to provide financial, emotional and residential support to their adult children who were experiencing problems with mental illness, substance abuse and/or absence of employment. Twenty-nine American women (>60) were interviewed:55 per cent were poor and half were women of colour. Using the theoretical model of intergenerational ambivalence, three types of structural ambivalence are discovered: mothers’ reactions to their adult children's behaviour that violate expectations for reciprocity; women's dismayed reactions to their adult children's aggressive behaviours towards themselves as their mothers; and the women's struggle regarding balancing their role as a mother to protect their adult children alongside their wish and identified needs for self-care. All of the conflicts were expressed within the frame of their role of mother. The internalised mandate to be ‘a good mother’ resulted in many experiencing shame, self-blame and guilt, and this self-blame was an obstacle to reaching out for help. This study adds to the growing body of feminist gerontological research and examines the ideological and structural variables that influence the predominance of female unpaid family care-givers in later life. The dilemma for older women with troubled adult children is both personal and political.
Ketamine is a new and promising treatment for depression but comes with challenges to implement because of its potential for abuse.
We sought the views of patients to inform policy and practical decisions about the clinical use of ketamine before large-scale roll-out is considered.
This qualitative study used three focus groups and three validation sessions from 14 patients with prior diagnoses of depression but no experience of ketamine treatment. Focus groups explored their views about clinical use of ketamine and the best way for ketamine to be administered and monitored. The qualitative data were analysed by three service-user researchers using thematic analysis.
Five themes were generated: changing public perceptions, risks, monitoring, privacy and data protection, and practical aspects. Participants were conscious of the stigma attached to ketamine as a street drug and wanted better public education, and evidence on the safety of ketamine after long-term use. They felt that monitoring was required to provide evidence for ketamine's safe use and administration, but there were concerns about the misuse of this information. Practical aspects included discussions about treatment duration, administration and accessibility (for example who would receive it, under what criteria and how).
Patients are enthusiastic about ketamine treatment but need more information before national roll-out. The wider societal impact of ketamine treatment also needs to be considered and patients need to be part of any future roll-out to ensure its success.
No co-productive narrative synthesis of system-level facilitators and barriers to personal recovery in mental illness has been undertaken.
To clarify system-level facilitators and barriers to personal recovery of people with mental illness.
Qualitative study guided by thematic analysis. Data were collected through one focus group, which involved seven service users and three professionals. This group had 11 meetings, each lasting 2 h at a local research institute, between July 2016 to January 2018.
The analysis yielded three themes: barriers inhibiting positive interaction within personal relationship networks, roots of barriers from mental health systems and the social cultural context, and possible solutions to address the roots. Barriers were acknowledged as those related to sense of safety, locus of control within oneself and reunion with self. The roots of barriers were recognised within mental health services, including system without trauma sensitivity, lack of advocacy support and limited access to psychosocial approaches. Roots from social cultural context were also found. There were no narratives relating to facilitators. A possible solution was to address the roots from systems. Social cultural change was called for that makes personalised goals most valued, with an inclusive design that overcomes stigma, to achieve an open and accepting community.
The analysis yielded system-level barriers specific to each recovery process. Roots of barriers that need transformation to facilitate personal recovery were identified within mental health services. Social interventions should be further explored to translate the suggested social cultural changes into action.
Early withdrawal from the workforce is associated with a diagnosis of multiple sclerosis (MS), with employment retention rates also lower than in the general population. Despite legal requirements, equality in the workplace for people with MS has not been achieved. Disclosure of multiple sclerosis at work is essential for the implementation of accommodations enabling employment retention.
An interpretive descriptive study explored participants’ decision to disclose or not disclose their diagnosis of multiple sclerosis and the implications this had on work participation and working relationships. Semistructured interviews were used to collect data from 6 participants.
Three themes were identified, using a reflective approach to analysis, from the data: (a) Accommodations; (b) Workplace Relationships; and (c) Balancing Work and Home Life. Participants had mixed experiences of disclosing their diagnosis. Findings supported the implementation of workplace accommodations including physical, cognitive, and structural supports. Concealment of MS was associated with fear of workplace stigmatisation.
Disclosure is multidimensional and subjective. It is based on personal, systematic, and social factors. This study was limited by the small number of participants and not including stakeholders in the creation of the topic guide. The results are important for those involved in supporting people with multiple sclerosis to remain in the workplace.
The practice of public and patient engagement (PPE) in health technology assessment (HTA) has spread worldwide, yet gaps in knowledge remain. We carried out an institutional ethnography of the Canadian Agency for Drugs and Technologies in Health (CADTH) public and patient involvement in HTA.
The research took place over 15 months and included observational work in the institutional settings, text review, and interviews with individuals working for or involved with the agency.
We found that despite demonstrated commitment to PPE, organizational history, governance structure, and practices were impediments to a unified approach to PPE. Unclear role descriptions for committee members and differences in philosophy and priority given to PPE across the organization presented challenges to effective participation. The high degree of value given to evidence-based principles at times conflicted with meaningful integration of patient input. A lack of clear goals and processes, roles, and differential treatment of evidence in PPE served to minimize the importance of patient experiences and to displace their validity. An acknowledgment of conflicts between multiple epistemic traditions at work within HTA activities may strengthen organizational approaches to PPE.
HTA organizations can learn from this study by reflecting on the challenges described and the recommendations offered to address them. We suggest solidifying CADTH's commitment to PPE with clear agency-wide roles and direction, values, and outcomes, a comprehensive framework, and policy and procedures. An acknowledgment of diverse epistemic traditions, as well as leadership and expertise in PPE, will strengthen CADTH's PPE activities and sustain its leadership position in the HTA field.
This study aims to assess stakeholder perceptions on the challenges and value of real-world evidence (RWE) post approval, the differences in regulatory and health technology assessment (HTA) real-world data (RWD) collection requirements under the German regulation for more safety in drug supply (GSAV), and future alignment opportunities to create a complementary framework for postapproval RWE requirements.
Eleven semistructured interviews were conducted purposively with pharmaceutical industry experts, regulatory authorities, health technology assessment bodies (HTAbs), and academia. The interview questions focused on the role of RWE post approval, the added value and challenges of RWE, the most important requirements for RWD collection, experience with registries as a source of RWD, perceptions on the GSAV law, RWE requirements in other countries, and the differences between regulatory and HTA requirements and alignment opportunities. The interviews were recorded, transcribed, and translated for coding in Nvivo to summarize the findings.
All experts agree that RWE could close evidence gaps by showing the actual value of medicines in patients under real-world conditions. However, experts acknowledged certain challenges such as: (i) heterogeneous perspectives and differences in outcome measures for RWE generation and (ii) missing practical experience with RWD collected through mandatory registries within the German benefit assessment due to an unclear implementation of the GSAV.
This study revealed that all stakeholder groups recognize the added value of RWE but experience conflicting demands for RWD collection. Harmonizing requirements can be achieved through common postlicensing evidence generation (PLEG) plans and joint scientific advice to address uncertainties regarding evidence needs and to optimize drug development.
Despite the growing use of retirement communities and ageing care facilities, little is known about how residing in retirement residences may impact aspects of older adult wellbeing. Living in these communities may hold particular influence on residents’ sense of purpose, if they feel limited in their opportunities for individual action, or could serve to promote purposefulness depending on the social connections available. The current study sought to explore contributing factors as well as barriers to purpose in older adults living in three continuing care retirement communities. Using brief semi-structured interviews, 18 older adults were asked to describe their purpose in life, community-related activities and any perceived challenges limiting their ability to pursue this purpose. Thematic analysis was used to examine themes common across interviews. Interviews presented a mixed picture of the nature of purposefulness in retirement facilities. Residents espoused several benefits of community living such as social and leisure opportunities, while also noting several obstacles to their purpose, including health concerns and the belief that purpose in life was not relevant for older adults. These findings provide insight into how older adults can derive a sense of purpose from activities within their retirement community and how facilities can better tailor programmes to promote purposefulness and support personally valued roles for residents.
To explore the experiences of patients living with diabetic lower extremity amputation (DLEA) and its post-amputation wound in primary care.
DLEA, including both minor and major amputation, is a life-altering condition that brings numerous challenges to an individual’s life. Post-amputation physical wound healing is complicated and challenging because of wound dehiscence and prolonged healing times. Understanding patients’ experiences after DLEA with a post-amputation wound will enable healthcare professionals to develop interventions to assist patients in physical healing and psychosocial recovery.
This study employs a qualitative design using interpretative phenomenological analysis (IPA). A purposive maximum variation sample of nine patients who had had lower extremity amputations and post-amputation wound attributed to diabetes in the previous 12 months was recruited from a primary care setting in Singapore. Semi-structured audio recorded one-to-one interviews with a duration of 45–60 min each were conducted between September 2018 and January 2019. The interviews were transcribed verbatim and analysed using IPA.
The essential meaning of the phenomenon ‘the lived experiences for patients with DLEA and post-amputated wound’ can be interpreted as ‘struggling for “normality”’ which encompasses four domains of sense making: physical loss disrupted normality, emotional impact aggravated the disrupted normality, social challenges further provoked the disrupted normality, and attempt to regain normality. The study highlights the complex physical and psychosocial transition facing patients after DLEA before post-amputation wound closure. In primary care, an amputation, whether minor or major, is a life-altering experience that requires physical healing, emotional recovery, and social adaptation to regain normality. Patients living with DLEA and a post-amputation wound may benefit from an interdisciplinary team care model to assist them with physical and psychosocial adjustment and resume normality.
Substantial evidence has highlighted the importance of considering the mental health of healthcare workers during the COVID-19 pandemic, and several organisations have issued guidelines with recommendations. However, the definition of well-being and the evidence base behind such guidelines remain unclear.
The aims of the study are to assess the applicability of well-being guidelines in practice, identify unaddressed healthcare workers’ needs and provide recommendations for supporting front-line staff during the current and future pandemics.
This paper discusses the findings of a qualitative study based on interviews with front-line healthcare workers in the UK (n = 33), and examines them in relation to a rapid review of well-being guidelines developed in response to the COVID-19 pandemic (n = 14).
The guidelines placed greater emphasis on individual mental health and psychological support, whereas healthcare workers placed greater emphasis on structural conditions at work, responsibilities outside the hospital and the invaluable support of the community. The well-being support interventions proposed in the guidelines did not always respond to the lived experiences of staff, as some reported not being able to participate in these interventions because of understaffing, exhaustion or clashing schedules.
Healthcare workers expressed well-being needs that aligned with socio-ecological conceptualisations of well-being related to quality of life. This approach to well-being has been highlighted in literature on support of healthcare workers in previous health emergencies, but it has not been monitored during this pandemic. Well-being guidelines should explore the needs of healthcare workers, and contextual characteristics affecting the implementation of recommendations.
Survivors of single ventricle heart disease must cope with the physical, neurodevelopmental, and psychosocial sequelae of their cardiac disease, which may also affect academic achievement and social relationships. The purpose of this study was to qualitatively examine the experiences of school and social relationships in adolescents with single ventricle heart disease.
A descriptive phenomenological methodology was employed, utilising semi-structured interviews. Demographic and clinical characteristics were obtained via chart review.
Fourteen adolescents (aged 14 to 19 years) with single ventricle heart disease participated. Interviews ranged from 25 to 80 minutes in duration. Four themes emerged from the interviews, including “Don’t assume”: Pervasive ableism; “The elephant in the room”: Uncertain future; “Everyone finds something to pick on”: Bullying at school; “They know what I have been through”: Social support. The overall essence generated from the data was “optimism despite profound uncertainty.”
Adolescents with single ventricle heart disease identified physical limitations and school challenges in the face of an uncertain health-related future. Despite physical and psychosocial limitations, most remained optimistic for the future and found activities that were congruent with their abilities. These experiences reflect “optimism despite profound uncertainty.”
Health Canada is committed to the modernization of the use of real-world data (RWD) and evidence (RWE) to support regulatory decisions. As such, telephone interviews with stakeholders, including government decision makers, health technology assessment (HTA) producers, industry, and patients, to understand their experiences with and perspectives on how to enhance RWE use for medical devices were performed.
Thirty-four semi-structured telephone interviews with forty key informants were conducted. Transcripts were reviewed independently by one individual to identify, define, and categorize key concepts and were verified by a second reviewer.
There are expectations for Health Canada to provide a framework and guidance on RWE use, identify relevant outcomes for data collection and criteria for data quality, conduct post-market surveillance more systematically, and partner with HTA organizations to develop methods for RWE generation. Stakeholders interviewed support the RWE use for regulatory decisions and HTA recommendations. Moreover, robust scientific methods for RWE generation will be critical to ensure that relevant questions are asked and rigorous statistical analyses are done to answer them. Patients are likely to consent to share their anonymized or de-identified medical information for nonprofit purposes.
Key concepts from the interviews centered on the current and future RWE use for medical devices, considerations for the organizational, medical, scientific, and legal aspects and privacy issues of RWD collection or RWE generation, and options to implement the use of RWD and RWE. Our study findings will help inform the development of an RWE framework for regulatory decisions and HTA recommendations.
Physical health outcomes in severe mental illness are worse than in the general population. Routine physical health check completion in this group is poor.
To quantitatively and qualitatively evaluate the impact of point of care (POC) blood testing on physical health check completion in community mental health services.
In a prospective cohort design, we equipped an early intervention service (EIS) and a community mental health team (CMHT) with a POC blood testing device for 6 months. We compared rates of blood test and full physical health check completion in the intervention teams with a matched EIS and CMHT, historically and during the intervention. We explored attitudes to POC testing using thematic analysis of semi-structured interviews with patients and clinicians.
Although the CMHT scarcely used the POC device and saw no change in outcomes, direct comparison of testing rates in the intervention period showed increased physical health check completion in the EIS with the device (rate ratio RR = 5.18; 95% CI 2.54–12.44; P < 0.001) compared with usual care. The rate was consistent with the EIS's increasing rate of testing over time (RR = 0.45; 95% 0.09–2.08; P = 0.32). Similar trends were seen in blood test completion. POC testing was acceptable to patients but clinicians reported usability, provision and impact on the therapeutic relationship as barriers to uptake.
POC testing was beneficial and acceptable to patients and may increase physical health check uptake. Further research, accounting for clinician barriers, is needed to evaluate its clinical and cost-effectiveness.
Childhood obesity is of increasing concern in South Africa, and interventions to promote healthy behaviours related to obesity in children are needed. Young children in urban low-income settings are particularly at risk of excess adiposity. The current study aimed to describe how parents of preschool children in an urban South African township view children’s movement and dietary behaviours, and associated barriers and facilitators.
A contextualist qualitative design was utilised with in-depth interviews conducted in the home setting and analysed using reflexive thematic analysis. Field notes were used to contextualise findings.
Four neighbourhoods in a predominantly low-income urban township.
Sixteen parents (fourteen mothers, two fathers) of preschool-age children were recruited via preschools.
Four themes were developed: children’s autonomy and the limits of parental control; balancing trust and fears; the appeal of screens; and aspirations and pressures of parenthood. Barriers to healthy behaviours included children’s food preferences, aspirations and pressures to consume unhealthy foods, other adults giving children snacks, lack of safe places to play, unhealthy food environments and underlying structural factors. Facilitators included set routines, the preschool environment, safe places to play and availability of healthy foods.
Low-income families in Soweto face many structural challenges that cannot easily be addressed through public health interventions, but there may be opportunities for behavioural interventions targeting interpersonal and organisational aspects, such as bedtime routines and preschool snacks, to achieve positive changes. More research on preschoolers’ movement and dietary behaviours, and related interventions, is needed in South Africa.
To investigate club managers’ and parents’ experiences with food selection at handball halls in order to identify facilitators and barriers to the availability of healthy food.
Individual interviews with club managers (n 6) and focus groups (n 5) with parents (n 21) were conducted. Interviews were recorded and transcribed verbatim, transcripts were coded in NVivo and the analysis was guided by thematic analysis.
Interviews were conducted at five handball clubs with varying socio-economic user populations and sizes in the area of Oslo, Norway.
The club managers were responsible for food selection at the handball clubs. The participating parents had one or two active children between the ages of 6 and 12 years who took part in the clubs.
The club managers and parents generally described food selection at the handball halls as unhealthy and wanted a healthier selection of food. The club managers’ primary barriers to providing a healthier food selection included the potential to lose profits, limited facilities and time to prepare these foods. The parents often valued unhealthy food, as they believed that it supported the social environment and served as a reward for the children. Trainers were perceived as important role models for the promotion of healthy eating. The participants thought that national guidelines could facilitate healthy food environments in sports arenas.
Healthier food options in sports settings could be facilitated through national guidelines that describe healthy foods and establish who is responsible for providing healthy food selections.
Healthcare decision makers are increasingly demanding that health technology assessment (HTA) is patient focused, and considers data about patients' perspectives on and experiences with health technologies in their everyday lives. Related data are typically generated through qualitative research, and in HTA the typical approach is to synthesize primary qualitative research through the conduct of qualitative evidence synthesis (QES). Abbreviated HTA timelines often do not allow for the full 6–12 months it may take to complete a QES, which has prompted the Canadian Agency for Drugs and Technologies in Health (CADTH) to explore the concept of “rapid qualitative evidence synthesis” (rQES). In this paper, we describe our experiences conducting three rQES at CADTH, and reflect on challenges faced, successes, and lessons learned. Given limited methodological guidance to guide this work, our aim is to provide insight for researchers who may contemplate rQES. We suggest several lessons, including strategies to iteratively develop research questions and search for eligible studies, use search of filters and limits, and use of a single reviewer experienced in qualitative research throughout the review process. We acknowledge that there is room for debate, though believe rQES is a laudable goal and that it is possible to produce a quality, relevant, and useful product, even under restricted timelines. That said, it is vital to recognize what is lost in the name of rapidity. We intend our paper to advance the necessary debate about when rQES may be appropriate, and not, and enable productive discussions around methodological development.
Behavioral and psychological symptoms of dementia (BPSD) are very prevalent among individuals with dementia living in residential aged care. The development and implementation of new non-pharmacological interventions to reduce BPSD requires knowledge on the current perception and clinical practice of the care staff. We analyzed clinical care notes to examine the way residential aged care staff reported and managed BPSD in their daily clinical practice.
We examined semi-structured care notes relating to the presentation and management of behaviors of 76 older residents (67% female; aged 67-101; 75% with formal dementia diagnosis) prior to participating in the Australian BPSDPLUS Program. As part of standard clinical practice in three residential aged care facilities, staff document the presentation and management of behaviors amongst residents. Using an inductive thematic analytical approach, we analyzed the reported data in the one and a half months prior to commencing participation in the BPSDPLUS Program. Care notes were coded and analyzed by two independent assessors and they discussed themes until consensus was reached.
A total of 465 behavior charts were completed in the one and a half months prior to the commencement of the BPSDPLUS Program. The number of behavioral charts varied widely across residents (Mean=7.3, range 0–93). Behaviors such as refusal of care, repetitive verbal behaviors, and wandering were most often mentioned, while apathy and affective and psychotic symptoms were seldomly reported. When confronted with BPSD, the clinical care notes indicated that care staff tend to respond in a reactive manner by reassuring, redirecting, or distracting the resident. Furthermore, it seems that staff did not routinely investigate potential underlying causes of the BPSD.
These results suggest that the residential care staff primarily detected and responded to externalizing behaviors, while more internalizing behaviors were not reported. Potential underrecognition of internalizing behaviors, as well as the fact that the staff did not routinely examine causes of BPSD are vital observations for the development and implementation of nonpharmacological interventions and care programs targeting BPSD in residential aged care.
To collect context-specific insights into maternal and child health and nutrition issues, and to explore potential solutions in Nanoro, Burkina Faso.
Eleven focus groups with men and women from eleven communities, facilitated by local researchers.
The study took place in the Nanoro Health district, in the West-Central part of Burkina Faso.
Eighty-six men (18–55 years) and women by age group: 18–25; 26–34 and 35–55 years, participated in the group discussions.
Participants described barriers to optimal nutrition of mothers and children related to a range of community factors, with gender inequality as central. Major themes in the discussions are related to poverty and challenges generated by socially and culturally determined gender roles. Sub-themes are women lacking access to food whilst pregnant and having limited access to health care and opportunities to generate income. Although communities believe that food donations should be implemented to overcome this, they also pointed out the need for enhancing their own food production, requiring improved agricultural technologies. Given the important role that women could play in reducing malnutrition, these communities felt they needed to be empowered to do so and supported by men. They also felt that this had to be carried out in the context of an enhanced health care system.
Findings reported here highlight the importance of nutrition-sensitive interventions and women’s empowerment in improving maternal and child nutrition. There is a need to integrate a sustainable multi-sectorial approach which goes beyond food support.