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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.

This paper aims to share how the Centre for Ageing and Dementia Research co-designs research within a national programme of work to improve the lives of older adults and those affected by dementia. Through examples of this work, the authors identify the barriers and enablers to participatory approaches and lessons to inform future involvement activities.

This study reflects on implementing the UK National Standards for Public Involvement into practice. Of international relevance, the observations span the research process from research prioritisation and design to research implementation and knowledge exchange.

This study demonstrates the importance of using a relational approach, working toward a common purpose and engaging in meaningful dialogue. Only through offering choice and flexibility and actively learning from one another can co-design lead to synergistic relationships that benefit everyone.

Key implications for researchers engaged in patient and public involvement are be receptive to other people’s views and acknowledge expertise of those with lived experience alongside those with academic expertise. Training, resources and time are required to effectively support involvement and meaningful relationships. A nominated contact person enables trust and mutual understanding to develop. This is an ongoing collective learning experience that should be embedded throughout the entire research process.

This paper demonstrates how the standards are implemented with people who are often excluded from research to influence a national programme of work.

Involvement of parents/carers may increase effectiveness of primary school-based alcohol-misuse prevention projects through strengthening family-based protective factors, but rates of parental engagement are typically low. This paper reports findings from an exploratory trial of a school-based prevention intervention – Kids, Adults Together (KAT), based on the Social Development Model, which aimed to promote pro-social family communication in order to prevent alcohol misuse, and incorporated strategies to engage parents/carers. The purpose of this paper is to assess the feasibility and value of conducting an effectiveness trial of KAT.

The study was a parallel-group cluster randomised exploratory trial with an embedded process evaluation. The study took place in south Wales, UK, and involved nine primary schools, 367 pupils in Years 5/6 (aged 9-11 years) and their parents/carers and teachers. Questionnaires were completed by pupils at baseline and four month follow-up, and by parents at six month follow-up.

Overall KAT was delivered with good fidelity, but two of five intervention schools withdrew from the study without completing implementation. In total, 50 per cent of eligible parents participated in the intervention, and KAT had good acceptability among pupils, parents and teachers. However, a number of “progression to effectiveness trial” criteria were not met. Intermediate outcomes on family communication (hypothesised to prevent alcohol misuse) showed insufficient evidence of an intervention effect. Difficulties were encountered in identifying age appropriate outcome measures for primary school-age children, particularly in relation to family communication processes. The study was unable to find comprehensive methodological guidance on exploratory trials.

It would not be appropriate to conduct an effectiveness trial as key progression criteria relating to intervention and trial feasibility were not met. There is a need for new measures of family communication which are suitable for primary school-age children, and more guidance on the design and conduct of exploratory/feasibility trials.

KAT achieved high rates of parental involvement, and its theoretical framework and processes could be adapted by other interventions which experience difficulties with recruitment of parents/carers.

The purpose of this paper is to test whether incorporating a 20-week Kundalini yoga programme into a residential home for children improves well-being outcomes.

This is a mixed methods feasibility study. Feasibility was assessed through recruitment and retention rates as well as participants’ self-report perceptions on social inclusion, mental health and well-being and through semi-structured interviews on the benefits of the study. Mutual recovery entailed that children in care (CIC), youth practitioners and management participated together in the Kundalini yoga sessions.

The study initially enrolled 100 per cent of CIC and 97 per cent (29/30) of eligible staff. Attendance was low with an average rate of four sessions per participant (SD=3.7, range 0-13). All the participants reported that the study was personally meaningful and experienced both individual (e.g. feeling more relaxed) and social benefits (e.g. feeling more open and positive). Pre- and post-yoga questionnaires did not show any significant effects. Low attendance was associated with the challenges faced by the children’s workforce (e.g. high levels of stress, low status, profile and pay) and insufficient consultation and early involvement of stakeholders on the study implementation process.

Because of the chosen research approach (i.e. feasibility study) and low attendance rate, the research results may lack generalisability. Therefore, further research with larger samples including a control or comparison group to pilot similar research questions is mandatory.

This study has generated a number of valuable guiding principles and recommendations that might underpin the development of any future intervention for CIC and staff working in children’s homes.

The concept of togetherness and mutuality within residential spaces is discussed in the paper.

The effects of Kundalini yoga have not been reported before in any peer-review publications. This paper fulfils an identified need (i.e. poor outcomes among CIC and residential staff) and shows how movement and creative practices can support the concept of mutual recovery.

The aim of this action research was to explore, from a workforce and a patient/carer perspective, the skills and the capacity required to deliver integrated care and to inform future workforce development and planning in a new integrated care system in England.

Semi-structured interviews and focus groups with primary, community, acute care, social care and voluntary care, frontline and managerial staff and with patients and carers receiving these services were undertaken. Data were explored using framework analysis.

Analysis revealed three overarching themes: achieving teamwork and integration, managing demands on capacity and capability and delivering holistic and user-centred care. An organisational development (OD) process was developed as part of the action research process to facilitate the large-scale workforce changes taking place.

This study did not consider workforce development and planning challenges for nursing and care staff in residential, nursing care homes or domiciliary services. This part of the workforce is integral to the care pathways for many patients, and in line with the current emerging national focus on this sector, these groups require further examination. Further, data explore service users' and carers' perspectives on workforce skills. It proved challenging to recruit patient and carer respondents for the research due to the nature of their illnesses.

Many of the required skills already existed within the workforce. The OD process facilitated collaborative learning to enhance skills; however, workforce planning across a whole system has challenges in relation to data gathering and management. Ensuring a focus on workforce development and planning is an important part of integrated care development.

This study has implications for social and voluntary sector organisations in respect of inter-agency working practices, as well as the identification of workforce development needs and potential for informing subsequent cross-sector workforce planning arrangements and communication.

This paper helps to identify the issues and benefits of implementing person-centred, integrated teamworking and the implications for workforce planning and OD approaches.

A narrative has developed in recent years to link ageing without children to support needs in later life. Social care has long been viewed as a private, familial responsibility, whilst health care is a societal, public good. Childlessness is framed negatively in terms of increased demands on care services and wider family networks. As governments tackle the issue of how to fund and deliver an equitable and sustainable long-term care sector, this paper aims to argue that it is more critical than ever to evaluate views of childlessness in the context of ageing.

Policy-oriented commentary paper.

If the focus on childlessness and ageing is through a lens of a potential care deficit, this continues to frame ageing without children as a risk and does little to challenge increasing reliance on unpaid care. Research and policy need to explore how to make access to social care more equitable and reduce expectations of unpaid care. They also need to increasingly emphasise exploration of aspects of later life beyond the issue of care, for example, by more of a focus on communities, what matters to people to age well and lives that extend beyond traditional views of nuclear families.

This paper uses the UK as a contextual example to argue that the research and policy communities have a role to play in evaluating their constructions of childlessness and ageing and questioning whether they do little more than legitimise government’s unwillingness to take responsibility for social care.

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.