Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives
Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods
A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results
Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions
This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: a mixed methods study

Background: The lack of access to good quality palliative care for people with intellectual disabilities is highlighted in the international literature. In response, more partnership practice in end-of-life care is proposed. 
Aim: This study aimed to develop a best practice model to guide and promote partnership practice between specialist palliative care and intellectual disability services. 
Design: A mixed methods research design involving two phases was used, underpinned by a conceptual model for partnership practice. 
Setting/participants: Phase 1 involved scoping end-of-life care to people with intellectual disability, based on self-completed questionnaires. In all, 47 of 66 (71.2%) services responded. In Phase 2, semi-structured interviews were undertaken with a purposive sample recruited of 30 health and social care professionals working in intellectual disability and palliative care services, who had provided palliative care to someone with intellectual disability. For both phases, data were collected from primary and secondary care in one region of the United Kingdom. 
Results: In Phase 1, examples of good practice were apparent. However, partnership practice was infrequent and unmet educational needs were identified. Four themes emerged from the interviews in Phase 2: challenges and issues in end-of-life care, sharing and learning, supporting and empowering and partnership in practice. 
Conclusion: Joint working and learning between intellectual disability and specialist palliative care were seen as key and fundamental. A framework for partnership practice between both services has been developed which could have international applicability and should be explored with other services in end-of-life care.

A Comparison of Support Needs Between Rural and Urban Family Caregivers Providing Palliative Care

The present study examined the support needs for urban and rural family caregivers of a palliative family member using a cross-sectional telephone survey in northeastern Ontario, Canada (n = 140; 70 urban, 70 rural). Support needs identified as most important by both the groups were informational. Rural caregivers reported greater unmet needs in tangible support (P =.01). No differences were observed between the groups for emotional or informational support needs (P =.25 and P =.35, respectively). Rural and urban caregivers perceived care for care recipients as accessible (mean accessibility score 1.9, standard deviation [SD] = 0.09 and 1.7, SD = 0.7, respectively, P =.20); the majority indicated that when needed, services were easily and quickly obtained. Although there are similarities in the formal care experiences, rural caregivers experience greater unmet needs in receiving support for instrumental activities. © The Author(s) 2013.

The barriers & solutions to providing good quality palliative care in dementia in the GP practice

BACKGROUND: Dementia is a significant worldwide health issue, however, it is often insidious in onset and difficult to diagnose, therefore GPs have expressed a limited confidence in their diagnostic skills, extending into their prognostication of the disease. As a result diagnosing the terminal phase of dementia has been identified as a significant challenge to delivering effective palliative care. Therefore, identifying the challenges faced by the GPs in this field will help to guide their training and support, and as a result could assist in the provision of sustained and effective palliative care for their dementia patients.

At Home in Care: Children living with birth parents on a Care Order

This study explored the processes, background information, and perceived reasons why children and young people returned home while remaining in care, in the five HSC Trusts in Northern Ireland. The research also focused on understanding the functions the Care Order had for social services, the birth parents, and young people involved.
It was found that on 31st March 2009, there were 193 children/young people living with their birth parents on a Care Order in Northern Ireland. This is eight per cent of the total population of Looked After children, and is lower than had been anticipated from governmental statistics. In total, the case files of 47 of these young people (24% of them) were reviewed, and interviews were conducted with ten of them and their birth parent/s.
The analysis revealed that the majority of them had in common a parental background history of alcohol abuse and domestic violence, and most return breakdowns in the study were related to continuing parental alcohol and/or drugs misuse. While some children had a planned return home after parents had engaged in supports and completed assessments, many young people had returns that were not planned, as they initiated the move themselves, or previous foster placements had broken down and there were no alternative placements identified for them. Many of these young people essentially ‘voted with their feet’, and social services were required to ensure that they remained safe in often less than optimal circumstances.
After returning home, for many, Care Orders remained for initially unintended lengthy periods because of the risks posed by parents’ intermittent alcohol abuse and their lifestyle, contact issues, and parents’ desire to ensure that their children were able to access the supports that they needed. Thus, Care Orders at home tended to serve two main functions: to either monitor and/or support the placement.