How has the Personalisation of Social Care Impacted on Service Users with Dementia?

The personalisation agenda is a government initiative aimed at transforming adult social care through giving service users choice and control over the care they receive. A key part of this agenda is the provision of direct payments; cash payments made to individuals eligible for social care services which allow them to manage their own care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However very few people with dementia currently access direct payments. The objective of this research was to explore the social care experiences of people with dementia in relation to their access to and use of direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers, and focus groups held with two community social work teams. It was found that direct payments tended to be seen as a fall-back option, for example as the only alternative to residential care, or as a solution to problems with traditional services. Direct payments appeared to afford particular benefits to people with dementia in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments. The second (ongoing) phase of this research comprises the design and pilot testing of an intervention aimed at improving access to direct payments by people with dementia.

Myths and Realities of Inter-professional Working

Introduction: Childhood cancers are rare and community based health care professionals have limited experience in caring for these children and often even less experience in providing their palliative care. It is well recognised that the provision of palliative care falls beyond the remit of any one profession, thus inter professional working is the standard model. This qualitative study aims to examine the experiences of the range of health care professionals involved in providing palliative care at home for children with cancer, focusing on how knowledge is exchanged; the level of communication and support both interprofessionally and at the community/specialist interface. It also aims to examine interprofessional collaboration in palliative care; identifying healthcare professional's perceptions of problems involved, interprofessional boundaries, specific areas of the organisation or provision of care that could be enhanced through changes in practice, support issues and the educational needs of health professionals. Methods The study involves three types of data collection; in-depth interviews, facilitated case discussion (FCD) and field notes from up to 20 cases (a "case" refers to the provision of palliative care to one child). Cases are selected from children who were treated at one regional childhood caner centre. For each case the community based health care professionals (for example the GP, community nurse or health visitor) involved in the care of the child at home are invited to participate in a one-to-one tape recorded in-depth interview followed by a group discussion in the form of a FCD. Field notes are completed following each interview. Data analysis follows a grounded theory approach. The term "social worlds theory" (SWT) his used to define a type of social organisation with no fixed or formal boundaries (such as membership boundaries), for example the range of health professionals that work together to provide palliative care. The boundaries of SW's are determined by the interaction and communication between recognised organisations, such as community nursing teams and general practitioners. SWT examines encounters between different professional groups and can be used to extend knowledge in both the organisation (for example general practice) and the content of what is being provisioned (for example, palliative care). The use of SWT in the analysis of the data is through examining the ethos of the different professions and the associated individual approaches to palliative care, exploring how this determines their roles in the provision of palliative care. Results 10 cases have so far been completed: 47 1:1 interviews (with a range of between 2-7 health care professionals being involved in each case): ( 9 x GP, 19 x CCN, 4 x DN, 3 x HV, 1 x HV assistant 7 x paediatric palliative care nurses, 1 x home support worker, 1 x OT, 1 x physiotherapist, 1 x community paediatrician) and 5 x FCD. The range of participants in the FCDs reflected that of the individual interview sampler. Data obtained to date gives clear insight into the personal experience of the individual health care professional in providing palliative care. Two themes emerging from the data will be focused upon: the continuity of care provision throughout treatment and palliation and the emotional burden experiences by the health care professional. Conclusions SWT can provide a useful framework in examining the social worlds of a disparate group of health care professionals working together for the first and maybe, the only time. A wide variation in the continuity of care provision has been found not only between professions, but also within professions. The emotional burden is evident across the professions.

Growing Well-beings: the Positive Experience of Care Farms

Objectives: Care farms enable people who are in some way vulnerable to engage with agricultural places and farming activities. This study investigates how this impacts on the health and well-being of service users and explores associated processes and outcomes. Design: A mixed methods design was adopted that allowed for the integration of quantitative measurements of change with qualitative descriptions of this change. A pragmatic approach provided sufficient flexibility to support the investigation of complex contexts. Methods: A total of 216 service users completed an initial questionnaire, and 137 (63%) of this number provided comparative data in a follow-up questionnaire. Questionnaires contained multiple choice and open-ended questions alongside standardized health and well-being measures requiring Likert-format responses. Semi-structured interviews with 33 service users allowed personal experiences to be detailed. Results: Statistical analysis of well-being measure scores identified significant positive relationships with the length of time people had been attending the care farm. Questionnaire and interview data presented health benefits as being enabled by the farm environment, the positive experience as supporting personal development, and associated social interactions as becoming increasingly influential as time progressed. Conclusions: The health and well-being outcomes that result from participating at a care farm influence multiple elements of the human condition and apply amongst vulnerable people with a wide range of personal needs. Care farms have access to a potentially unique range of resources that can support many service users in becoming happier and healthier individuals.

Exploring and Improving Access to Direct Payments by People with Dementia Living in Rural Communities

Direct payments are cash payments made to individuals eligible for social care services which allow them to manage their own social care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However uptake of direct payments is currently low. The first objective of this research was to explore the experiences of people with dementia living in rural communities, in relation to their access to direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers. Focus groups were carried out with two community social work teams. Direct payments appeared to afford particular benefits to people with dementia and to those living in rural communities in terms of flexibility, continuity of care and access to local facilities. However it was found that many service users were daunted by the thought of managing their own social care budget. The second objective of the research was to design and pilot test an intervention aimed at increasing uptake of direct payments by people with dementia. This comprised a session delivered to a team of social workers, aimed at encouraging them to offer combined direct payments to service users as a potentially less daunting alternative to full direct payments. Combined direct payments enable service users to receive part of their social care budget as a direct payment while the remainder is retained and managed by the Local Authority. In order to evaluate the intervention direct payment uptake will be examined for the six-month period before and after the intervention session, and social workers in the intervention team will be interviewed about their experiences of offering combined direct payments to service users.

Exploring Access to Direct Payments by People with Dementia Living in Rural Communities

Direct payments are cash payments made to individuals eligible for social care services which allow them to manage their own social care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However uptake of direct payments is currently low. There is a lack of research to date in this area which addresses the factors of dementia, ageing and rurality in unison. Therefore the objective of this research was to explore the experiences of people with dementia living in rural communities, in relation to their access to direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers. Focus groups were carried out with two community social work teams, and existing online discussions regarding direct payments were examined. It was found that direct payments tended to be seen as a fall back option, for example as the only alternative to residential care, or as a potential solution to problems experienced by existing social care service users. Direct payments appeared to afford particular benefits to people with dementia and to those living in rural communities in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments; ensuring direct payments are viewed as a positive option by all stakeholders is key to this.

Exploring Access to Direct Payments by People with Dementia Living in Rural Communities

Direct payments are cash payments made to individuals eligible for social care services which allow them to manage their own social care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However uptake of direct payments is currently low. There is a lack of research to date in this area which addresses the factors of dementia, ageing and rurality in unison. Therefore the objective of this research was to explore the experiences of people with dementia living in rural communities, in relation to their access to direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers. Focus groups were carried out with two community social work teams, and existing online discussions regarding direct payments were examined. It was found that direct payments tended to be seen as a fall back option, for example as the only alternative to residential care, or as a potential solution to problems experienced by existing social care service users. Direct payments appeared to afford particular benefits to people with dementia and to those living in rural communities in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments; ensuring direct payments are viewed as a positive option by all stakeholders is key to this.

Exploring Access to Direct Payments by People with Dementia Living in Rural Communities

Direct payments are cash payments made to individuals eligible for social care services which allow them to manage and pay for their own social care rather than receiving it directly from their Local Authority. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However uptake of direct payments is currently low, particularly amongst people with dementia. Those living in rural communities may experience additional barriers to direct payments, such as transport issues and difficulty recruiting carers. There is a lack of research to date in this area which addresses the factors of dementia, ageing and rurality in unison. Therefore the objective of this research was to explore the experiences of people with dementia living in rural communities, in relation to their access to and use of direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers. Focus groups were carried out with two community social work teams, and existing online discussions about direct payments contributed to by social care staff, people with dementia and their carers were examined. It was found that direct payments tended to be seen as a fall back option, for example as the only alternative to residential care, or as a potential solution to problems experienced by existing social care service users. Direct payments appeared to afford particular benefits to people with dementia and to those living in rural communities in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments; ensuring direct payments are viewed as a positive option by all stakeholders is key to this.

Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

GPs Experience of Caring for Children with Cancer Receiving Palliative Care at Home

Background The study being undertaken builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived by the family as the gatekeeper of care within the community. Aim The study is examining GPs perception of their role in caring for an individual child with cancer receiving palliative care and comparing this with families' perceptions of their GP's roles. Methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM) to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well as the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40–60 GPs will be involved in the QM. Findings Findings detailing GP experiences from the initial study along with the preliminary findings of the semi-structured interviews with parents and GPs will be presented. Papers' contribution The results will identify and clarify GPs perceptions of their roles, and what families perceive their GPs role to be, enabling development of strategies to support GPs roles. It is anticipated that findings will inform the wider field of palliative care generally and the practice of both hospital and community paediatricians.