Search results

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 report on the views and experiences of older people using Shared Lives (adult placement) in 2012/2013.

As part of a survey collecting information about outcomes for older users of Shared Lives issues of whether it had made a difference to quality of life, and positive and negative experiences of support were explored.

Questionnaires were returned by 150 older people using Shared Lives services. Findings suggest that this model of community-based support has a number of advantages for some older people, such as reducing social isolation and loneliness, promoting independence, choice and control, providing emotional support and increased well-being.

The questionnaire was self-completed and so responses were not followed up to provide deeper insights.

Shared Lives is not appropriate for everyone but it is suggested that this option should form part of local commissioning strategies, be part of a range of options for social care practitioners to consider in their work with older people and helps to meet various current policy imperatives.

The potential of Shared Lives for older people is under-researched and this paper contributes to the literature in exploring the views of older people about family-based support in the community.

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.

Digital systems for independent aging, support and care are not being adopted as hoped. The purpose of this paper is to examine the results of three studies to derive key factors during the development and engineering process of care and support systems for older people that can impact acceptance and uptake to provide support to future projects.

The paper analyzed the results of three qualitative studies, including two detailed case studies and a further study with 35 participants, to derive key factors. Methods for deriving factors are based on thematic analysis to identify common factors across cases and participants.

The findings point to a broad set of interconnected factors that give developers of these types of systems specific recommendations. These highlight what makes these projects complex and identify implications for the development process. Furthermore, they show way the needed user-centered and iterative methods may be in conflict with funding processes.

While others have reported on single projects or looked at acceptance, these studies were the first to explore aspects of the development process that may contribute to the lack of success to date of these types of systems. The results here support more successful outcomes in the future, both by helping people involved in the development of these systems to avoid some of the issues others face and providing input to improve the performance of the engineering process.

This research priority setting partnership (PSP) aims to collaboratively identify the “top ten” research priorities relating to communication and swallowing for children and adults with learning disabilities, across the lifespan in the UK, using a modified James Lind Alliance approach.

A steering group and reference group were established to oversee the PSP. A survey of speech and language therapists (SLTs) resulted in 157 research suggestions. These were further developed into 95 research questions through a multi-stakeholder workshop. Questions were prioritised via an online card-sort activity completed by SLTs, health-care or education professionals and carers. Research questions were analysed thematically. Ten adults with learning disabilities were supported to assign ratings to themes reflecting their prioritisation. The top ten research priorities were identified by combining results from these activities.

The top ten research priorities related to intervention, outcome measurement and service delivery around communication and dysphagia.

To the best of the authors’ knowledge, this is the first UK-wide research PSP on learning disabilities and speech and language therapy across the lifespan. It uses a novel approach to incorporate the preferences of people with learning disabilities in the prioritisation.

The aim of this paper is to contribute to a greater understanding of non-profit organization (NPO) management control systems (MCS) and accountability in organizations providing support service for capacity constrained service users. Specifically, the paper examines the role of MCS and accountability in supporting mission realization in NPOs providing services to people with intellectual disabilities and reflects on this in the context of the COVID-19 pandemic.

The research comprised a case study of four NPOs providing services to people with intellectual disabilities in Ireland conducted prior to the global COVID-19 pandemic. The study probed management's perceptions of stakeholders and examined the manner in which the design and use of MCS and accountability processes supported mission realization.

Service users were regarded as the least powerful stakeholder and consequently the least attended to in terms of MCS and accountability processes. The absence of relational and dialogical accountability with service users is not only central to maintaining this power asymmetry but also poses a threat to mission realization. These deficits can be addressed through the integration and monitoring of internal advocacy activities into MCS and accountability processes, which, on reflection, may also mitigate some of the negative consequences for service users of isolation from external support networks in times of crisis.

This research has opened up an area for enquiry – internal advocacy – heretofore not addressed in the management accounting literature, opening up a novel vein for future research. Such research could further examine the role of internal advocacy, drawing from and adding to the research in other support service domains. A number of objectives and questions might be considered: (1) probing the level of management recognition of the role of direct engagement in advocacy activities in supporting service user agency; (2) identifying with service users and management the nature and attributes of effective advocacy activities and practices; (3) questioning how such advocacy activities and practices might be reflected in MCS; (4) identifying what service user stakeholders regard as effective accountability to them in relation to their needs and objectives; and (5) assessing the impact on service user experience and on NPO mission realization of internal advocacy activities and the monitoring and review thereof through MCS. These suggestions for future research draw attention to aspects of support service delivery that have the potential to be profoundly influential on service outcomes.

A performance management model reflecting the identified need to incorporate internal advocacy mechanisms into organizational management control systems is proposed in an effort to increase accountability of NPOs to their core mission stakeholder – service users. This model may be of value to NPO management as they move from a medical-model of care to a rights-based model for service delivery in care settings.

The paper reflects the importance of listening to the voice of vulnerable service users in NPO care settings and proposes a mechanism for embedding internal advocacy in formal management control systems and accountability processes.

In proposing an “agency” supportive relational and dialogical accountability logic for such organizations, underpinned by “internal advocacy”, this research provides theoretical and practical insights for accountability processes and the design of MCS. The findings contribute empirically, not just to the NPO management and MCS literature but also to understanding the relational interaction of service users with service organizations, and what this means in supporting service user objectives and realization of organizational mission.

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.