Gippsland Region Palliative Care Consortium (GRPCC) La Trobe University Palliative Care Unit (LTUPCU) Developing capacity for palliative care in Gippsland: The role of the Gippsland Region Palliative Care Consortium: Capacity building in member organisations Brief report Wendy Dagher, Andrea Grindrod & Bruce Rumbold December 2014 FINAL Brief Report - GRPCC organisational capacity.docx 1 of 9
This report provides an overview of the Developing capacity for palliative care in Gippsland: The role of the Gippsland Region Palliative Care Consortium: Capacity building in member organisations project, an independent evaluation of the Gippsland Region Palliative Care Consortium (GRPCC) conducted by La Trobe University Palliative Care Unit. The full report is available from the GRPCC at enquiries@grpcc.com.au. The aim of this project was to investigate the influence of the GRPCC on the capacity of member services to deliver palliative care in the Gippsland region since the introduction of Victoria s Strengthening palliative care: Policy and strategic directions 2011-15. Of particular interest was: 1. The impact of member organisations' involvement in the GRPCC on their organisational capacity to deliver palliative care services. 2. The perceived value of the GRPCC to staff of member services. 3. The effectiveness of GRPCC as a means for improving the provision of palliative care services in the region. To investigate this, we asked these questions of 31 people working at one of the 14 GRPCC member services or as a member of the GRPCC team: 1. What impacts has the GRPCC had on the capacity of its member services to deliver palliative care? 2. Which initiatives of the GRPCC have had the greatest impact on the delivery of palliative care in the region? 3. What do staff of member services perceive as the key roles, or functions, of the GRPCC? 4. What does membership of the GRPCC provide to member services that they could not provide themselves? 5. How would the delivery of palliative care in the Gippsland region be affected if the GRPCC ceased to exist? All GRPCC member services were represented amongst the participants. In this report the primary focus is on their responses, as the GRPCC Management Group has emphasised the importance of obtaining the views of staff at the coal face. We have also filled in the background by consulting a range of documents produced over the last four years by the consortium. Data from both interviews and documents were reviewed according to a comprehensive organisational capacity building framework that includes top-down, bottom-up, partnership and community organising initiated capacities (outlined on page 7). These two sources of information, analysed against the capacity building framework, shape our comments and recommendations. Key findings 1. What impacts has the GRPCC had on the capacity of its member services to deliver palliative care? 87% of respondents reported that the work of the GRPCC has impacted positively on member services, by increasing their capacity to deliver palliative care. Participants responses provided evidence for ten out of the twelve themes of organisational capacity building, with particular strength in the areas of: o Policy development, o Resource allocation, o Workforce/skills/professional development (PD) program, and FINAL Brief Report - GRPCC organisational capacity.docx 2 of 9
o Organisational implementation. There were some disparate findings between the interview data and documents: o The document analysis showed that the GRPCC has undertaken considerable work in the areas of: sanctions/incentives for compliance, collaborations, networking and information sharing, and involvement of people from disadvantaged groups. o In the interviews these initiatives did not feature. o Possibly some staff of member services are unaware of some of the work being carried out by the GRPCC, so did not mention these areas when interviewed. Or it could be that the policies, ideas and documentation have been well developed, but the outcomes and impacts in services have not yet become apparent. Areas for development include work related to the themes of: o Ideas generated and implemented, o Individual organisation reorienting of services and programs, o Community ownership, and o Involvement of key community leaders. 2. Which initiatives of the GRPCC have had the greatest impact on the delivery of palliative care in the region? According to staff of member services, the GRPCC initiatives with the greatest impact on member services capacity to deliver high quality palliative care to their patients have been the: o Visiting Palliative Care Specialist Program (29%), o Nurse Practitioner/Candidate Program (20%), o Education/training program (20%), and o Clinical tools and guidelines (20%) (see Figure 1). The interview data appeared to be consistent with the document analysis, which showed considerable evidence for organisational capacity building themes related to each of these initiatives. This highlights the value services place on improving the quality of clinical palliative care to their patients, clearly meeting a need for both expanding and improving expertise in the region. Evidence for a few initiatives was absent from both the interviews and the document analysis: strengthening links between the GRPCC and stakeholders, and Health Promoting Palliative Care (HPPC). Both of these initiatives relate to themes associated with community organising (see Table 1), which appears to be an area for further development in the GRPCC s work. FINAL Brief Report - GRPCC organisational capacity.docx 3 of 9
Volunteer training, 3 Palliative aged care resource/link nurse, 8 After hours model, 7 Resources/inform ation for staff & patients, 5 Psychosocial/bere avement support, 1 Visiting palliative care specialist program, 29 Clinical tools & guidelines, 20 Nurse Practitioner Candidate Program, 20 Education/trainin g program, 20 Figure 1 GRPCC initiatives with most significant impact across Gippsland (% of responses); n=75 3. What do staff of member services perceive as the key roles, or functions, of the GRPCC? All participants had a clear understanding of some key roles or functions of the GRPCC, as indicated by the level of consistency between the main themes from the interview data and the objectives and role of the GRPCC listed in the Strategic Plan 2012-2015 and the About the GRPCC brochure. o 84% of participants identified GRPCC s management of the service delivery framework as a key role. o 32% of participants mentioned GRPCC s regional planning perspective as a key role. All other roles identified in GRPCC documentation were mentioned by at least some participants, but no single participant described the full extent of GRPCC s brief. A few additional roles not mentioned in GRPCC documentation were however identified during interviews, including: o The GRPCC s use of a collective or collaborative approach was mentioned by 26% of respondents, and o Ensuring equity and access to palliative care services for everyone living in Gippsland was acknowledged by 16% of respondents. Only 3% of respondents were aware of the GRPCC s role in advising the Department of Health regarding regional priorities for future service development and funding. This activity could be promoted by the GRPCC in the future, with input sought from services in the region to foster a collective approach to advocacy. All participants mentioned advantages of belonging to the GRPCC, especially in relation to its provision of: FINAL Brief Report - GRPCC organisational capacity.docx 4 of 9
o o o Resources, Education/training, and Policy development. Not surprisingly, it seems that member services see the GRPCC principally in terms of its contribution to their service, albeit with some awareness of the broader scope of the consortium s activities and responsibilities. 4. What does membership of the GRPCC provide to member services that they could not provide themselves? Almost all participants perceived the GRPCC as highly valuable to its member services, affirming it as an effective means of improving the standard of palliative care services across the region. According to participants, the major perceived benefits of being involved with the GRPCC related to having access to: o Palliative care resources (61% of respondents), o Consistent policies, clinical guidelines and tools (54% of respondents), and o The education/pd program (46% of respondents). Participants responses provided evidence for seven out of the twelve themes of organisational capacity building. o Strengths relate to themes of resource allocation, policy development, and education/skills/pd. o Areas for development include themes related to building capacity in the community, staff of services generating ideas and having the opportunity to implement them, and mechanisms for performance management and quality assurance. For some services, particularly those linked with agencies providing a range of healthcare services, the GRPCC adds value not only to their palliative care practice but also to other aspects of their operations such as the: o Adaptation of ideas from a GRPCC program to be used in another area of health care, and o Use of skills and knowledge learnt through the GRPCC education program in areas other than palliative care. For other, smaller, services the GRPCC is essential to their continuing operation, providing resources they would not otherwise be able to generate for themselves. The GRPCC has placed a high priority on supporting its member services to build capacity in clinical service delivery. This is not surprising given that, compared with metropolitan health services, rural services have a relatively lower level of access to, and availability of, resources needed to deliver essential health care to their communities. These results provide evidence that a regional consortium approach to tackling marginalised health and social issues is useful, as seen by the uptake of GRPCC initiatives in other areas of health. 5. How would the delivery of palliative care in the Gippsland region be affected if the GRPCC ceased to exist? 71% of respondents believed that their palliative care service delivery would be negatively impacted if the GRPCC ceased to exist. The major areas of impact related to the organisational capacity building themes of: Resource allocation (52%), Policy development (32%), and Workforce/skills/PD program (29%), and the additional theme of Quality of care (36%). FINAL Brief Report - GRPCC organisational capacity.docx 5 of 9
Even though a few services, with relatively high levels of palliative care expertise, believed their services would not necessarily be adversely affected by the absence of the GRPCC, they expressed considerable concern for their colleagues across the region for whom the GRPCC s contribution is crucial to providing good palliative care services. 77% of participants stated that nobody other than the GRPCC would be able to perform the key roles and functions of the GRPCC. o The comprehensive, multifaceted, collaborative, regional approach taken by the GRPCC to the coordination of quality palliative care, could not be maintained by individual services. While a few participants thought that other organisations or groups or an individual service could carry out some of the key functions of the GRPCC, they agreed that none of these bodies could fulfil all of the key roles or provide them across the entire region. If no one fulfilled these key functions, 45% of respondents anticipated that the standard of palliative care would decline across the region, and 32% of respondents predicted that there would be a fragmentation of care due to a lack of coordination between services. Challenges for the GRPCC in supporting services to deliver high quality palliative care throughout Gippsland While the evidence has clearly shown that the benefits of the GRPCC outweigh any insufficiencies, a few challenges were identified by participants. Only some of these challenges are within the scope of the GRPCC s work and relate to the leadership/management of GRPCC, including: o Administration of GRPCC is sometimes inefficient (identified by 15% of respondents), and o Communication/provision of information to services is not always effective (identified by 22% of respondents). Collaboration between the GRPCC and services is required to address other challenges such as: o Some difficulties in ensuring the right people in services received the right information from the GRPCC (identified by 22% of respondents), o GP engagement (identified by 15% of respondents), and o Some GRPCC activities were not necessarily relevant to the needs of each local service (identified by 19% of respondents). Other challenges for the delivery of high quality palliative care in the Gippsland region relate to a lack of resources/funding, which is beyond the direct control of the GRPCC: o Services having insufficient resources to implement GRPCC initiatives (identified by 48% of respondents), and o A lack of funding for palliative care (identified by 19% of respondents). Capacity Building In the full report we have organised the interview and document data using a comprehensive model of capacity building. The framework consists of 12 themes relating to organisational capacity building (see Table 1). Table 1 Framework for assessing organisational capacity* Theme Definition FINAL Brief Report - GRPCC organisational capacity.docx 6 of 9
Theme Definition TOP DOWN Organisational implementation Policy development Resource allocation Sanctions/incentives for compliance Changes in organisational structure, leadership, and decision making.. Includes region-wide vision, and prioritising and raising the profile of palliative care.. Development of policies, guidelines and tools for staff to use in their delivery of services. Includes consistency of care. Provision of resources: human, financial, information technology, information, specialist advice. Includes support to and communication with services. Mechanisms for performance management and quality assurance. BOTTOM UP Ideas generated & implemented Workforce/ skills/ PD program Staff encouraged to generate ideas and given opportunity to implement them. Staff training and education. Opportunities for staff to utilize new skills and knowledge, engage in reflective practice, and share their knowledge with colleagues. PARTNERSHIPS Community activation Collaborations, networking and information sharing Individual organisation reorienting of services & programs Efforts to form partnerships with community members/organisations (including volunteering). Collaborative partnerships, relationship building, and development of networks across organisations and between different groups. Changes in the way an organisation delivers its services and programs. COMMUNITY ORGANISING Community ownership Involvement of key community leaders Involvement of persons from disadvantaged groups Opportunities for community members to initiate, contribute and take responsibility for developing capacity. Opportunities for key community leaders to become involved in community capacity building. Opportunities for members of disadvantaged groups to be involved in capacity building, through access to information, education and support. N.B. *Based on model developed by Crisp, Swerissen & Duckett (2000), Four approaches to capacity building in health: Consequences for measurement and accountability This model of organisational capacity building identifies strengths and areas for improvement. The GRPCC cannot be expected to address all themes, only those within its sphere of governance. The GRPCC has made FINAL Brief Report - GRPCC organisational capacity.docx 7 of 9
positive impacts across many domains of organisational capacity building indicating that these achievements are highly significant. Compared with metropolitan areas, Gippsland s large geographical area and lower population densities mean that as a region it has a relatively lower level of access to, and availability of, resources needed to deliver essential health care to its communities. Understandably, the GRPCC has placed a high priority on supporting its member services to build capacity in clinical service delivery, and this is evident in the themes identified in the data. Recommendations: The recommendations that follow are based on findings of the interviews, but influenced by both the supporting document and capacity building analyses. Some recommendations inevitably are aspirational in nature. This research has identified a range of possibilities, based on evidence, for the GRPCC to take into consideration for their future planning and decision making. Continue and expand on existing programs and initiatives The GRPCC should continue to support the Specialist Palliative Care Consultancy Service, NPC Program, education/training program, aged care link nurse program, raising standards of care, volunteer training and recruitment, after-hours project, and carers. Particular attention should be given to: Ensuring that all services in all sub-regions have adequate access to the Palliative Care Specialist. Providing more online education/training and expanded access via videoconferencing, thus enabling greater access for staff in remote areas. Streamlining data collection and reporting requirements for services, and providing related education and support. Improve GP engagement Some local services need the GRPCC to play a greater role in engaging GPs with their programs. This could include: Surveying GPs about their knowledge and needs in the area of palliative care, perhaps in consultation with GML. Developing a model for GP education that caters specifically to the needs of GPs and involves relevant palliative care specialists. Asking member services which have had success in engaging GPs for advice to assist other services that are experiencing difficulties in this regard. Community capacity building Community capacity building for palliative care was identified as an important area for further development in Gippsland. We recommend that the GRPCC consider: Investigating existing community based initiatives in Gippsland relating to palliative care to both map and improve understanding of community generated activities in the region Funding and/or supporting other community capacity building projects such as the GLCH project, Making the last chapter reflect the whole book, and evaluating their effectiveness to improve individual and collective community resilience for end of life issues FINAL Brief Report - GRPCC organisational capacity.docx 8 of 9
Expanding its efforts in promotion and community education about palliative care and EOL issues, including publicising community capacity building projects and activities through a number of channels, such as the media, health services, community organisations, and academic publications. Relationship building and consultation with staff in member services The GRPCC should increase its focus on building relationships with staff in services, in particular providing opportunities for staff to give feedback about GRPCC initiatives. In doing so the GRPCC might consider: Identifying and supporting potential palliative care champions in each service and focus on building strong relationships with them. Further develop relationships with on the ground clinicians, by ensuring that their voices are heard at GRPCC meetings, and by providing regular opportunities for staff in services to contribute ideas and give feedback about GRPCC initiatives. Ensuring that there are clear communication processes between themselves and services, and that the correct information is relayed to the appropriate staff members. Advocate for, and address needs of, local services To ensure that their initiatives meet the differing needs of local services, the GRPCC should: Coordinate a collective approach for advocacy to Government for regional needs in palliative care, in close consultation with its member services. Assist services to overcome the challenge of balancing daily demands with implementing new initiatives, by streamlining and integrating initiatives. Recognise when services already have efficient, high quality models that work for them. Consider conducting, in collaboration with each service, an assessment of each service s current organisational capacity building activities, to identify areas of strength and areas for development. Consult with services to help them tailor initiatives/projects to suit the needs of their service and/or subregion. Consider ideas about different funding models that may allow services to use funds for purposes that suit their local needs. Ensure that unfunded services receive support equivalent to that of funded services, since all are providing palliative care. This report relates to the first phase of the project, which primarily focuses on organisational capacity building of GRPCC member organisations. Phase 2 of the project, scheduled to commence in 2015 will predominantly focus on community capacity building in the Gippsland Region. FINAL Brief Report - GRPCC organisational capacity.docx 9 of 9