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In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers’ views and experiences of involvement in research and development (R&D) work.

A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations.

Core findings included carers’ discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy.

Limitations included the relative lack of male carer participants and the convenience sample.

Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement.

There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.

The purpose of this paper is to scope out European and global policy documents focused on dementia with the purpose of providing a synthesis of the challenges the phenomenon poses and the gaps evident.

An adapted PESTEL framework as a data extraction tool resulted in an analysis of the political, economic, social, technological, environmental, organisational, educational and research aspects of dementia policy.

Policy documents showed variability of dementia strategy, plan and programme development. All documents recognised rapidly growing ageing populations, and increasing numbers of people living with dementia. Dementia as a public health priority is inconsistent in growth. Global policy documents stress the impact of dementia will be felt most by low- and middle-income countries. Main themes were: a need to raise awareness of dementia and action to reduce stigma around it, the need for early diagnosis and preventative person-centred approaches with integrated care, fiscal investment, further research, training and education for workforces, increased involvement of and support for people living with dementia and care and support close to home.

By identifying current dementia challenges and policy gap implications this analysis urges engagement with broader frames of reference as potential for enabling bolder and radically better dementia care models.

This paper offers a review of present global and European dementia policy, outlining the potential implications for the most marginalised in society if it fails to be critical of its own underpinning assumptions.

Female adults diagnosed with myalgia encephalomyelitis (ME) and chronic fatigue syndrome (CFS) often are marginalised because their condition is not fully recognised by medical and health-care systems. The purpose of this small-scale study was to explore the lived experiences of adult females with ME/CFS in England in relation to contributing factors that impact their occupational participation.

A qualitative study design using semi-structured interviews was used with nine female adult participants who were selected using a purposive sampling method. A Thematic Networks tool was used to analyse data.

Four organising themes were identified: impairment-, person-, environment- and society-related factors. Two global themes, invisibility and diagnosis stigma, were identified as the overarching issues that female adults with ME/CFS face in occupational participation.

Many of the issues that contribute to lack of participation by this population are associated with environmental factors which are secondary to their illness.

Secure mental health services in one UK region have acted within a network to develop a range of involvement practices. A new quality benchmarking tool has been created to appraise the implementation of these involvement practices. The purpose of this paper is to report upon a qualitative evaluation of this development.

Staff and service users involved in the co-production of the benchmarking tool were engaged in a series of focus groups and participatory inquiry approaches enacted in the course of scheduled network meetings. Data thus collected was subject to thematic analysis.

Four distinct themes were identified which were titled: Taking time, taking care; The value not the label; An instrument of the network; and All people working together. These are discussed in relation to recent theorising of co-production.

Effectively, this study represents a case study of developments within one region. As such, the findings may have limited transferability to other contexts.

Staff and service users can work together effectively to the benefit of each other and overall forensic services. The benchmarking tool provides a readymade mechanism to appraise quality improvements.

Despite a prevailing culture of competition in wider health-care policy, cooperation leads to enhanced quality.

The benchmarking tool is a unique development of a longstanding involvement network, demonstrating the positive implications for enacting co-production within secure services.

The involvement of patients or members of the public within public health, health and social care and addictions services is growing in the UK and internationally but is less common in gambling support services. The purpose of this study was to explore Patient and Public Involvement (PPI) infrastructures and engagement channels used in health and care services and debate their transferability to the gambling support sector (including research, education and treatment).

A narrative review examined data from six English language electronic databases, NHS evidence and grey literature covering the period 2007–2019. We identified 130 relevant items from UK literature. A workshop was held in London, England, with people with lived experience of gambling harm to seek their views on and applicability of the review findings to gambling services.

Synthesis of literature and workshop data was undertaken. Main themes addressed “What works” in relation to: building infrastructures and organising involvement of people with lived experience; what people want to be involved in; widening participation and sustaining involvement and respecting people with lived experience.

Examination of the literature about involvement and engagement of patients, service users and the public in public health, health and social care and addiction services provides potentially useful examples of good practice which may be adopted by gambling services.

The involvement of people with lived experience of gambling harms in gambling support services is under-explored, with little published evidence of what constitutes good practice amongst self-organising groups/networks/grassroots organisations or rights-based/empowerment-based approaches.

This paper aims to explore how lone mothers define “good” mothering and outlines the extent to which feelings of pride and shame permeate their narratives.

The empirical data on which the paper is based is drawn from semi-structured interviews with 32 lone mothers from Northern Ireland. All the lone mothers resided in low-income households.

Lone mothers experienced shame on three levels: at the level of the individual whereby they internalised feelings of shame; at the level of the collective whereby they internalised how they perceived being shamed by others in their networks but also engaged in shaming and at the level of wider society whereby they recounted how they felt shamed by government agencies and the media.

While a number of researchers have explored how shame stems from poverty and from “deviant” identities such as lone motherhood, the focus on pride is less developed. The paper responds to this vacuum by exploring how pride may counterbalance shame's destructive and scarring tendencies.

The purpose of this paper is to provide insight into the reciprocal relations between the caregiving imparted by immigration centre managers and the role of the researcher in responding to the care that is given by managerial caregivers. To enable this, we draw on a feminist theory of care ethics that considers individuals as relationally interdependent.

The analysis draws on a semi-structured interview study involving 20 Finnish immigration reception centre managers.

Insight is generated by reflecting on moments of care that arise between research participants and the researcher in a study of immigration centre management. We emphasise the importance of mature care, receptivity and engrossment in building caring relationships with research participants by acknowledging the care they give to others. Our findings draw attention to the moral and epistemological responsibility to practice care in organizational research.

The paper highlights the relationality between practicing care in immigration centre management and doing qualitative organizational research, both of which rely on mature care, receptivity and engrossment in order to meet the other morally. We draw attention to the moral responsibility to care which characterises researcher–researched relationships and emphasise the importance of challenging methodological discourses that problematise or dismiss care in qualitative organizational research.

This paper aims to explore the extent to which principles of recovery-oriented practice are evident in the published perspectives and experiences of health professionals and service users on seclusion in adult mental health services.

A systematic review informed by PRISMA guidelines was conducted, drawing from four databases, which were searched in August 2018 and August 2022. Only original empirical studies rated as having “major” relevance were included. Data were extracted from 31 studies and qualitatively synthesised through deductive analysis using recovery principles as themes.

There was limited evidence of perceptions of seclusion being being consistent with recovery principles, with greater evidence of perceptions that directly opposed them. Studies of service user perspectives highlighted this more often than staff perspectives. The findings highlight paradoxical relationships between care and control and conflicting rights and emphasise the need to openly acknowledge the complexity of seclusion and its interface with recovery.

This review was developed in line with international best practice and the protocol was registered. Using a search string with only three components maximised sensitivity during searches and minimised the risk of relevant literature being missed. Limitations include the focus on studies where the full text was published in English.

This review makes a unique contribution, highlighting that, to the best of the authors’ knowledge, no studies to date have explicitly explored the perspectives and experiences of staff and service users on the use of seclusion in the context of recovery-oriented practice. The findings are relevant to clinical practice, policy and future research, including amending procedures and practices to partially reconcile seclusion and recovery where the seclusion is deemed necessary.

This study aims to investigate which factors are associated with the willingness of employers to hire people with disability from the perspective of disability employment service providers. We also identify social marketing approaches that disability employment service providers consider to be most effective in increasing employer willingness to hire people with disability.

Using the framework of the theory of planned behavior, this study examines the association of attitude, subjective norms and perceived behavioral control with employer willingness to hire people with disability. The authors do this from the perspective of disability employment service providers, who are responsible for matching people with disability with suitable employment opportunities. The authors used a qualitative approach to data collection and conducted 30 in-depth interviews. Data analysis included deductive and inductive coding to develop the themes and subthemes.

Attitude, subjective norms and perceived behavioral control were all perceived to influence employers’ willingness to hire people with disability. However, the importance of each construct was perceived to differ by location and organization type. Three key social marketing approaches were perceived to be most effective in increasing employer willingness to hire people with disability: educational, relational and interactive. The educational intervention attempts to increase employers’ knowledge about disability, the relational approach aims to develop relationships within the community to strengthen relationships with employers and the interactive approach involves direct contact between employers and people with disability.

Theoretically, this study reveals perceived heterogeneity in terms of the theoretical constructs that are employer hiring decisions. Practically, results help disability employment service providers design social marketing strategies that are effective in reducing barriers and increasing employment for people with disability. Methodologically, this study adds a new perspective on employer willingness to hire people with disability – that of disability employment service providers – which avoids the social desirability bias found in many self-reported studies of employer attitudes and behavior.