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.

Learning, development, and support needs of community palliative care clinical nurse specialists

Background: The palliative care clinical nurse specialist (PC-CNS) is a core member of the specialist palliative care team. According to professional policy, the role has four specific components: clinical practice, education, research, and leadership and management. Little is known about how to support staff in this role. Aim: The aim of this study was to explore what learning, development, and support PC-CNSs in one hospice need to enable them to fulfil all components of their role. Design: Using a descriptive exploratory approach, semi-structured interviews were undertaken with a purposive sample of community PC-CNSs from a hospice in Northern Ireland. Interviews were audio-recorded, transcribed verbatim, and thematically analysed. Findings: Seventeen interviews were analysed and three themes identified: influence of organisational culture, influence of the individual, and learning and development solutions. Conclusions: Participants reported that the PC-CNS role was stressful. They identified that the organisational culture and indeed individuals themselves influenced the learning and development support available to help them fulfil the four components of the role. Working relationships and stability within teams affected how supported individuals felt and had implications for managers in meeting the needs of staff while balancing the needs of the service.

Improving Bandwidth Efficiency in E-band Communication Systems

The allocation of a large amount of bandwidth by regulating bodies in the 70/80 GHz band, i.e., the E-band, has opened up new potentials and challenges for providing affordable and reliable Gigabit per second wireless point-to-point links. This article first reviews the available bandwidth and licensing regulations in the E-band. Subsequently, different propagation models, e.g., the ITU-R and Cane models, are compared against measurement results and it is concluded that to meet specific availability requirements, E-band wireless systems may need to be designed with larger fade margins compared to microwave systems. A similar comparison is carried out between measurements and models for oscillator phase noise. It is confirmed that phase noise characteristics, that are neglected by the models used for narrowband systems, need to be taken into account for the wideband systems deployed in the E-band. Next, a new multi-input multi-output (MIMO) transceiver design, termed continuous aperture phased (CAP)-MIMO, is presented. Simulations show that CAP-MIMO enables E-band systems to achieve fiber-optic like throughputs. Finally, it is argued that full-duplex relaying can be used to greatly enhance the coverage of E-band systems without sacrificing throughput, thus, facilitating their application in establishing the backhaul of heterogeneous networks.

Building capacity in palliative care for personal support workers in long-term care through experiential learning

Background

Providing palliative care in long-term care (LTC) homes is an area of growing importance. As a result, attention is being given to exploring effective palliative care learning strategies for personal support workers (PSWs) who provide the most hands-on care to LTC residents.

The purpose of this intervention was to explore hospice visits as an experiential learning strategy to increase the capacity of PSWs in palliative care, specifically related to their new learning, and how they anticipated this experience changed their practices in LTC.

This study utilised a qualitative descriptive design.

Eleven PSWs from four Ontario LTC homes were sent to their local hospice to shadow staff for one to two days. After the visit, PSWs completed a questionnaire with open-ended questions based on critical reflection. Data were analysed using thematic content analysis.

PSWs commented on the extent of resident-focused care at the hospice and how palliative care interventions were tailored to meet the needs of residents. PSWs were surprised with the lack of routine at the hospice but felt that hospice staff prioritised their time effectively in order to meet family and client care needs. Some PSWs were pleased to see how well integrated the PSW role is on the community hospice team without any hierarchical relationships. Finally, PSWs felt that other LTC staff would benefit from palliative care education and becoming more comfortable with talking about death and dying with other staff, residents and family members.

This study highlighted the benefits of PSWs attending a hospice as an experiential learning strategy. Future work is needed to evaluate this strategy using more rigorous designs as a way to build capacity within PSWs to provide optimal palliative care for LTC residents and their family members.

PSWs need to be recognised as important members within the interdisciplinary team. PSWs who shadow staff at hospices view this experience as a positive strategy to meet their learning needs related to palliative 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.

'Conditional candour' and 'knowing me': an interpretive description study on patient preferences for physician behaviours during end-of-life communication

OBJECTIVE: To understand patients' preferences for physician behaviours during end-of-life communication.

METHODS: We used interpretive description methods to analyse data from semistructured, one-on-one interviews with patients admitted to general medical wards at three Canadian tertiary care hospitals. Study recruitment took place from October 2012 to August 2013. We used a purposive, maximum variation sampling approach to recruit hospitalised patients aged ≥55 years with a high risk of mortality within 6-12 months, and with different combinations of the following demographic variables: race (Caucasian vs non-Caucasian), gender and diagnosis (cancer vs non-cancer).

RESULTS: A total of 16 participants were recruited, most of whom (69%) were women and 70% had a non-cancer diagnosis. Two major concepts regarding helpful physician behaviour during end-of-life conversations emerged: (1) 'knowing me', which reflects the importance of acknowledging the influence of family roles and life history on values and priorities expressed during end-of-life communication, and (2) 'conditional candour', which describes a process of information exchange that includes an assessment of patients' readiness, being invited to the conversation, and sensitive delivery of information.

CONCLUSIONS: Our findings suggest that patients prefer a nuanced approach to truth telling when having end-of-life discussions with their physician. This may have important implications for clinical practice and end-of-life communication training initiatives.