Children s Palliative Care Evaluation

Transcription

1 Children s Palliative Care Evaluation Final Report Hugh Goyder & Dr Mary Bunn A report for The Diana, Princess of Wales Memorial Fund May 2012

2 Abbreviations used APCA ART ARV s CDC CHOC CPC DOH EGPAF HAU HBC HPCA ICPCN ORCI OVC PC PCI PMTCT WHO African Palliative Care Association Anti-Retroviral Therapy Anti-Retrovirals (drugs) Centre for Disease Control, Atlanta, USA Childhood Cancer Foundation, South Africa Children s Palliative Care Department of Health, Government of South Africa Elizabeth Glazer Paediatric Aids Foundation Hospice Africa Uganda Home Based Care Hospice Palliative Care Association (of South Africa) International Children s Palliative Care Network Ocean Rd Cancer Institute, Dar es Salaam Orphans & Vulnerable Children Palliative Care Palliative Care Initiative at The Diana, Princess of Wales Memorial Fund Prevention of Mother-Child Transmission (of HIV) World Health Organisation Acknowledgements We would like to thank Joan Marston (the coordinator of the beacon centre project across South Africa, Uganda and Tanzania), Naledi Sout (navigator in South Africa), as well as the navigators, and all the staff at PASADA and Mildmay for hosting our visits. Page 2 of 41

3 Executive Summary This is the final report of a two-year evaluation of the an initiative by The Diana, Princess of Wales Memorial Fund to promote Children s Palliative Care (CPC) in three countries of Africa South Africa, Tanzania, and Uganda. The scope of the Fund s initiative included a substantial investment in training, textbooks and other training materials; support for a core group of consultants; and funding for three centres of training and clinical excellence, now known as Beacon Centres, at Mildmay in Uganda, PASADA in Tanzania, and HPCA in South Africa. These centres have all run six-month courses in CPC for a wide range of professional staff. The aim of this report is to assess the overall impact of the Fund s initiative on CPC in the three countries. It reviews the progress and achievements, challenges faced from the start to end of the project and the lessons learnt. It also provides recommendations both as to how the work undertaken can be consolidated by the Fund in the remaining nine months of its existence, and on the priorities for support from other donors. The methodological approach for this evaluation has included three visits over three years from the first one in January 2010, with the final one in February/March 2012.This has allowed the evaluators to get a far better understanding of the programme than would be possible in a single visit. Overall the evaluation finds that the combination of financial support and advocacy from the Fund over the last 10 years has helped give a higher profile to palliative care in sub-saharan Africa in general, and in all three countries in which the CPC work has focussed it has raised awareness both amongst professional staff and other aid donors about its importance. The three Beacon Centres have all put great efforts into running a six-month course in CPC. This has been a mixed experience across the three countries, with high completion rates in East Africa, but higher drop-out rates in South Africa. Though those who completed the course found it useful, it is generally felt to be too much work for a course that does not result in any accredited qualification. The course is now likely to become part of a longer, accredited Diploma course, at least in Uganda and South Africa; and in all three countries the Beacon Centres have found that another effective way of spreading knowledge about CPC is through a one-week Introductory course, often targeting professional staff in a single institution or cluster of institutions. The text book, Children s Palliative Care in Africa 1, produced by a group of CPC experts co-ordinated by Dr Justin Amery has clearly been highly popular, and both the contents and accessible style of writing appear to be appreciated. It will 1 Amery, J. (2009) Children s Palliative Care in Africa, Oxford University Press, available at hildren%27s+palliative+care+in+africa%3a+the+comprehensive+new+textbookm Page 3 of 41

4 remain a useful legacy of the Fund. A website, called Baobab, was launched in South Africa as a resource for trainees and others working in CPC, but the evaluation found that this website has been well used by people in South Africa, but far less by those in other African countries. It was originally designed only for South Africa as the Virtual Resource Centre. The Fund s initiative has worked with two models: the first a single Beacon Centre in each country, and the second a regional cluster of institutions which support each other in providing CPC. The latter model, which has emerged in the Free State in South Africa, is seen as the most promising model, as government hospitals, which are actually the institutions who treat children with the most acute PC needs, have to take a lead role. As regards research, this evaluation found it difficult to find evidence that the research commissioned by the Fund had either been widely quoted by others or had any influence on either governments or aid donors. It is often easier to commission this kind of research than to ensure the research outputs are widely disseminated and lead to changes in policy and practice, but in this case many of the researchers are themselves active in advocacy work in support of CPC. One issue that arose in this evaluation was the extent to which CPC should be separated from more general PC in Africa: many less children are now dying of HIV/AIDS and related diseases, and in training there are questions about the extent to which CPC should be promoted as a separate specialisation, or be seen as a key module of a broader PC training. We conclude that while doctors (and some specialist nurses) will continue to need more specialised training in CPC, the short Introductory course in CPC now offered in all three countries is highly relevant for all professionals working with children with life-threatening diseases. A minority of people who do this Introductory course may then want to continue to a full Diploma course in CPC, like the course designed by Mildmay in Uganda. For many other health workers it may be most appropriate to consider adult and child PC together, as the majority of health workers will in practice have to offer PC for both adults and children. As regards advocacy there has been considerable progress in all three countries in respect of the promotion of both PC and CPC, and that the work of the Fund has both encouraged this general progress and has also highlighted the importance of CPC. Morphine supplies, which used to be such a constraint on PC, have improved in all three countries. Progress on incorporating CPC in medical education is slow, but there is growing interest in this topic, and the growth of the media, including TV, radio, and newspapers as well as new social media offer great opportunities for spreading awareness about CPC to a wider public. The Fund has had some success at getting other donors interested in both PC and CPC, and is now supporting the International Children s Palliative Care Network (ICPCN) to promote CPC internationally through e-learning. Page 4 of 41

5 The combination of financial support and advocacy from the Fund over the last 10 years has helped give a higher profile to palliative care in sub-saharan Africa in general, and in all three countries in which the CPC work has been focussed it has raised awareness both amongst professional staff and other aid donors about the importance of children s palliative care. Page 5 of 41

6 Introduction This is the final report of an evaluation commissioned by The Diana, Princess of Wales Memorial Fund into the impact of its support for improved children s palliative care (CPC) in sub-saharan Africa. 2 The scope of the Fund s initiative included a substantial investment in training, textbooks, and other training materials; support for a core group of consultants; and funding for Beacon Centres of training and clinical excellence in CPC in South Africa, Uganda, and Tanzania. The details of the Fund s initiative are listed in the box below: The Fund has supported the following children s palliative care work: Funding the salary of a CPC expert employed by the Hospice and Palliative care Association of South Africa (HPCA) to develop CPC in South Africa and regionally (from ). The development and production of a textbook Children s Palliative Care Africa (2009) Development and production of a Toolkit for Children s Palliative Care (published 2008) A Review of current Paediatric Palliative Care provision in sub-saharan Africa (2010) Development and production of a training package on home-based palliative care for children under 7 years infected with HIV and their primary caregivers (2012) Funding research on a children s palliative care training analysis and assessment of children s palliative care courses ( to be published in 2012) Supporting the development of three Beacon Training Centres for children s palliative care in South Africa, Uganda and Tanzania ( ). This included the development of several curricula and represents the major investment by the Fund. The aim of this report is to assess the overall impact of the Fund s initiative on CPC in the three countries. It reviews the progress and achievements, challenges faced from the start to end of the project and the lessons learnt. It also provides recommendations both as to how the work undertaken can be consolidated by the Fund in the remaining nine months of its existence, and on the priorities for support from other donors. According to the World Health Organisation (WHO) palliative care (PC) is defined as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial 2 For brevity we refer to The Diana, Princess of Wales Memorial Fund as the Fund throughout this report. Page 6 of 41

7 and spiritual. Children s palliative care (CPC) is defined by WHO as the active, total care of the child s body, mind and spirit and also involves giving care to the family. Thus CPC is not limited to end-of-life care but may be required over a much longer period for children suffering many other chronic but potentially lifethreatening diseases. Methodology The evaluation involved three visits by the same two consultants over a three year period. The first visit in January 2010 aimed to understand the very different context in each of the three countries covered by the Fund s initiative, and to meet as many as possible of the people directly involved in the work, especially members of the core group who developed the curriculum for the CPC course, as well as the navigators, the staff of participating institutions, and others who are involved only more indirectly, including other aid donors. This was followed by a brief monitoring visit, with one consultant accompanying the project manager, to Uganda and Tanzania only in January The focus of this visit was more to understand the progress and operational challenges faced at that time. In February-March 2012, both consultants made a final visit to the three countries, and met the navigators, a large number of trainees, and other staff both of the different beacon institutions and other institutions that had benefited from the CPC training. In South Africa and Tanzania we also met with staff from two medical colleges interested in incorporating more CPC into their training curricula, and in Tanzania and Uganda met with the respective Palliative Care Associations. Since the start of the evaluation in 2009, the evaluators have had access to a considerable amount of documentation, and this provided vital background information. This documentation included a detailed evaluation of the six-month CPC course by Godfrey Agupio, which was also financed by the Fund. This final phase of the evaluation was mainly done through semi-structured individual interviews and also focus group discussions with key stakeholders, using a consistent set of questions. There are many advantages in undertaking an evaluation over three years, rather than just as a once-off exercise. The consultants are able to get to know both the technical issues, and the key stakeholders; they can build up a degree of trust, and are able to see and document changes of practice and behaviour over time. This approach to evaluation does not however solve the problem of attribution in this the extent to which changes observed can be attributed to the Fund, or to other actors. This was more difficult in our own case as the CPC is only one part of wider support for PC by the Fund in Africa over the last 10 years, including for instance support for the MPhil Programme in Palliative Care at the University of Cape Town, which has attracted students from across Africa. Page 7 of 41

8 We have designed this report in two parts. The first part reviews the Fund s CPC initiative in each of the three countries. The second part aims to be an overview, pulling together all the findings and drawing out general lessons. The Fund is due to close at the end of 2012, but the Beacon Centres have funding for 2013, and this evaluation therefore only makes a few general recommendations for the Fund which can be implemented within this limited time period, and longer term recommendations for the Beacon Centres. Page 8 of 41

9 Part 1 The Fund s Performance at Country Level This section of the report reviews the outcomes and impact of the Fund s financial support to CPC in South Africa, Tanzania, and Uganda. South Africa The key stimulus to developing CPC in South Africa from the mid-1990s onwards was the increasing number of children dying of HIV/AIDS at a time when there was little or no provision for CPC in the whole country. In 2007 the number of children dying of HIV/AIDS before the introduction of ARVs was estimated by the Hospice Palliative Care Association of South Africa (HPCA) to be around 300,000. In addition there was an unknown number of children living with other conditions requiring palliative care, especially cancer. According to an appraisal carried out by the HPCA in 2007 there were at that time only seven programmes that provided CPC, and these were mainly confined to the major cities. In 2007 the Fund gave financial support to the HPCA to enable it to appoint Joan Marston as its Paediatric Portfolio Manager. Joan had previously been instrumental in starting what is now called Sunflower House in the grounds of the National District Hospital in Bloemfontein as an in-patient unit for children who could not be looked after in Home-based Care (HBC) programmes. Joan s appointment led to the development of a national strategy for CPC combining advocacy, material development, and the opening of new programmes: 18 hospices had introduced CPC programmes by the end of To support these programmes the Fund also financed a Toolkit for Children s Palliative Care in cooperation with the HPCA, and Joan also took on a regional role in support of CPC in other parts of Africa, and in particular in Tanzania and Uganda. The need to expand CPC beyond South Africa led the Fund to establish Beacon Centres in both Uganda and Tanzania, with the aim for these institutions to become centres of excellence in CPC and to offer training to healthcare professionals. The three Beacon Centres were: Mildmay in Kampala, Uganda; PASADA in Dar es Salaam, Tanzania; and HPCA in South Africa. Two navigators from Tanzania and Uganda and one from South Africa were selected by the Beacon Centres. They went to South Africa for training in a new six-month course on CPC which combined two weeks of classroom teaching, placements in other institutions doing CPC, and written assignments. A web-based Virtual Resource Centre, the Baobab website, was established for South Africa to offer online advice and support both for staff doing training and other professionals working in CPC as well as resources and information In the 2010 progress report which was shared between the Fund and the Beacon Centres we noted how quickly the need for CPC was changing in South Africa, mainly as a result of ARVs becoming more widely accessible, with a major reduction in the number of children dying from HIV/AIDS related infections. Great Page 9 of 41

10 progress has certainly been made in reducing the transmission of HIV/AIDS from mothers to children, but even so it is estimated that there are 330,000 children living with HIV/AIDS in South Africa, and according to the UNAIDS 2011 report, roughly half of these children are receiving ART. 3 This suggests that in the long term, the demand for CPC will increase as those children not on ART fall sick. In addition however there are continuing PC needs among children with cancer, long-term disability and neurological disorders. The reduction in deaths amongst children living with HIV/AIDS does not mean that there is any less need for CPC: it is more that the kind of CPC that is needed has changed. As one nurse told us: In the past we saw HIV/AIDS children & they died, now we see them, and thanks to ART they normally live. Most of the children we see need social workers or psycho-social care, not clinical care. Most member hospices of the HPCA offer children CPC through HBC Programmes aimed to assist orphans and vulnerable children (OVC s). The staff running these programmes report that once all those who are HIV positive are on ART, the key need for the families is often food and nutrition. It is harder to secure donor support for this kind of assistance than for ART, but South Africa does have a basic social welfare system in place, with around 17m people who meet the eligibility criteria receiving monthly cash grants from the South African government. The hospice staff we met like those from Soweto Hospice told us that for them the critical issue when treating sick children through their HBC programmes was one of follow up, as otherwise parents did not bring children in regularly for check-ups. This kind of CPC is vital as it enables the HBC teams both to ensure adherence to ART and to manage any side effects caused by these drugs, which should enable children to stay healthy for longer. However few children were so sick that they needed to be admitted to the hospice. Indeed outside the major cities, hospices tend to have very few resident CPC cases for example Kimberley which we visited has beds for six children; two are occupied by children needing a place of safety ; one is a long term disabled child. The relatively small numbers of children who become seriously ill are usually referred to government hospitals. There are a far smaller number of children, estimated at around one in 600, who contract cancer, and if it is not diagnosed early enough they will require PC: staff 3 According to UNAIDS, between 40% and 59% of people with HIV/AIDS in South Africa are able to access ART See: _WorldAIDSday_report_2011_en.pdf Page 10 of 41

11 from the Childhood Cancer Foundation which supports children with cancer and their families have also been trained in courses financed by the Fund. The six-month course in South Africa So far 49 students have completed this course and the breakdown between different professional staff is as follows: Social workers: 18 Paediatrics nurse 29 Medical doctor 1 Others 1 This data suggests that it has been difficult to get doctors in particular to complete the full six-month course, perhaps because of the wider professional pressures they face. While all those we met, including those who for different reasons had been unable to complete the course, found it very useful, the table below shows that for all students the drop-out rate from this course has been relatively high: Numbers enrolling Numbers passing % of students completing First course Second course Current (2012) course 50 21* 42 Totals *The 2012 figure refers to the number of students taking the exams: the results are awaited. The discussions in the course of our evaluation found many reasons for the modest numbers signing up for the six-month course and the smaller numbers completing it. First, the continuing lack of formal accreditation for the six month course in South Africa is a major discouragement to trainees, given the amount of time and work required. The lack of official recognition has also made it harder to persuade institutions about the value of releasing their staff for the full course. This problem is well recognised by the HPCA, and in Free State thanks to the advocacy of Professor Hanneke Brits, who is a lecturer on the course, students completing the course can gain professional credits recognised by the University of the Free State. Secondly in all three countries trainees are expected to complete written assignments on a computer, and submit them by , but while some trainees were not sufficiently computer literate, others simply did not Page 11 of 41

12 have access to computers. Students were given the alternative of sending assignments by post. Thirdly, as in Tanzania and Uganda, there have been issues about the extent to which institutions both select the appropriate staff for the six-month course, and then provide their trainees with appropriate support to ensure completion of the course. For example in Wits Hospice, when a Paediatrics sister doing the full course returned after being away for two weeks on the taught part of the course, due to the pressure of work she was not given any time for follow-up study. As in the other countries, it has proved harder than expected to ensure that the right trainees sign up for the six months course. For instance in a 2011 report from South Africa the navigators said: We still find students doing the course who do not work in settings that have children s programmes or they do not work directly with children. This exposes them to difficulties when they have to write their reflective case studies. They cannot build a relationship with the child or parents they meet as they often have very short contact with them in the placement areas - making it difficult for the families to evaluate them and give them the feedback required. For supervision purposes this course makes use of the cluster model originally developed for the Free State. The cluster sites consist of a hospice or hospices with an inpatient unit, home-based care, day care and bereavement services; a hospital; a clinician with children s palliative care training and/or experience; and a university link. 4 This cluster approach appears very appropriate for South Africa given its size and the difficulty of supervising and finding appropriate placements for students across the country. The four cluster sites are in KwaZulu Natal, the Free State, Gauteng Province, and Western Cape, and in each location clinical supervisors who have been trained are used to supervise the students. This cluster model also has great potential to offer children a continuum of care, for instance children with particular needs identified in a Day Care Centre or HBC programme can be referred to a hospice or hospital as appropriate. 5 The Introductory course in CPC. HPCA have been running an introductory course in CPC for some years originally funded by the Fund in When the six month course was developed, they combined the content of the one week introductory course with 4 Pediatric Palliative Care: Global Perspectives, op. cit. 5 See ICPCN: Children s Palliative Care in South Africa the Facts : Page 12 of 41

13 the classroom-based teaching of the two week course. This means that everybody does the one week course and people who choose to do the six month course can easily step up and complete the additional week of teaching before undertaking the other elements of the longer course. HPCA also combined the funding they received from both the Fund and PEPFAR to fund these related training initiatives. This means that the numbers of new staff trained, and the resulting increase in CPC services cannot be wholly attributed to the Fund. However by the end of November 2011, 214 people had completed the Introductory course. All those we met spoke highly of it and highlighted different aspects which they found especially useful. For instance communication skills are seen as one of the most valuable parts of the course and one medical social worker who went to work in a private oncology clinic said that the Introductory course helped her talk to patients children; others see the main value in making them realise that they have to listen to, and work with the child. Non-medics say the one week Introductory course taught them the value of networking with other stakeholders when dealing with children. There have also been some unintended impacts. In the Free State some teachers have been included in the Introductory course. This is an interesting idea, but it has also become a source of confusion and frustration. At least the teachers we met who had done this course now wanted to refer highly vulnerable children they had identified in their schools to hospices. There are many thousands of such vulnerable children in South Africa, many of whom have suffered abuse, but they normally need social and psycho-social care rather than palliative care. The problem is that the teachers who had completed the Introductory course had an expectation that hospices would be able to take up cases of children who they refer, but the teachers we met have been disappointed in this respect: one reason may be that HPCA hospices are already implementing PEPFAR-supported HBC programmes for a defined case load of OVC s, and many may find it difficult to take on a potentially large number of new cases which may be referred to them. Linked to this change in eligible participants is the need for greater clarity about the exact definition of CPC. Many children, perhaps the majority of those enrolled in HBC programmes, and even a significant proportion of children in school, face major problems at home and are in need of care and support but especially food. This problem is not new: the danger of hospices becoming diverted into programmes of general support for orphans and other vulnerable children was highlighted both in the 2008 Toolkits, and the 2011 HPCA evaluation, which noted that: paediatric palliative care is not about general supportive care to orphans, or children on ART who are doing well. Page 13 of 41

14 Furthermore the largest numbers of trainees have come from hospices, and according to an evaluation of HPCA by Inside Out 6 there has been a big increase in the number of children receiving CPC in HPCA-member hospices (from 2808 in 2008 to today (this number includes OVC in care which form the largest part of the numbers), though the same report questions both the reliability of these numbers, and what hospices define as CPC). However even though this appears to be an impressive figure, hospices are not the institutions with the greatest number of very sick children, who, if they are not at home, are mainly to be found in government-run district and provincial hospitals. Conclusions Over the last decade much has been achieved in relation to CPC in South Africa, and the Fund, working closely with HPCA, is very strongly associated with these achievements. The major advances have been in the great increase in the number of staff with some training in CPC, which then allows staff to make greater use of tools to try to assess children s pain, to communicate with them, and to treat pain more effectively. As noted in our 2010 report, the HPCA and the Fund have followed an approach of learning by doing: the initial course was primarily for clinicians, but the pilot courses showed the need both for a broader content, and for a broader coverage of social workers and other professionals as well as medical staff, and the course was altered accordingly. HPCA has been offering courses on CPC for many years, but in collaboration with the Fund and experts it identified like Dr Justin Amery, it was able to become closely involved in developing a curriculum, text book, and website to support the six-month course. It has proved more difficult both in South Africa and in Uganda and Tanzania to secure official accreditation for the course, but this difficulty has not seriously upset the momentum: at the end of 2010 there were estimated to be 60 institutions offering some kind of CPC in South Africa compared with only 18 such programmes at the end of We conclude that the Fund has been able to have a disproportionate influence in promoting CPC in South Africa for relatively small amounts of money (as is confirmed by Inside Out s recent HPCA evaluation). This success was partly due to its ability to give full backing to a few highly motivated individuals, and there has sometimes been some loss of momentum when these individuals changed their roles. Future prospects 6 Inside Out: M&E Specialists, Evaluation of the Hospice Palliative Care Association of South Africa (2012), available at: 7 See Marston J. (2011) op,cit. Page 14 of 41

15 HPCA, Big Shoes Foundation and ICPCN have now formed an alliance to promote CPC, and this should maintain the progress in spite of the uncertainties caused by any reduction in PEPFAR funding to HPCA. With the Fund phasing out at the end of 2012, the plan is for HPCA s Education Department to take over both the six-month and the Introductory courses in CPC. HPCA now faces similar problems as the Fund has had in all three countries in trying to get the six-month course officially accredited as a Diploma course. While the ideal solution is probably to combine the existing adult and paediatric courses into a one year Diploma course, difficulties of accreditation may prevent this happening in the short term. The key need is for more government staff to complete both types of courses, and as noted in Inside Out s evaluation of HPCA, HPCA needs to focus its efforts on providing training courses in CPC for government staff. Recommendations For the rest of 2012 the navigators should focus on offering Introductory courses on CPC to both medical and other professional staff working in government hospitals, as these, rather than hospices, tend to be in the front line when it comes to CPC. While it is important for teachers to have a broad understanding about how best to support orphans and other vulnerable children in their schools, we suggest that a different kind of course to the current Introductory course should be designed for teachers in South Africa with the HPCA working in collaboration with the Department for Basic Education. At present there is only one navigator in South Africa (plus an administrator who is a nurse and who also gives some support to students). As the numbers of students increase, the amount of supervisory support they can provide to each student is likely to diminish. We therefore recommend that HPCA and its partner institutions collaborate in the development of a cadre of clinical supervisors based at cluster sites. As in the other countries, these supervisors can provide support both through individual visits and through Introductory courses in CPC for the institutions in which trainees are working. As in Tanzania and Uganda, we recommend that in South Africa the navigators make a big push in the next few months to distribute copies of the book to all the institutions (rather than just individuals) which send people on the Introductory course. Page 15 of 41

16 Tanzania General context CPC in Tanzania is generally at an earlier stage of development than in South Africa and Uganda, but there is now growing interest and some progress is being made. In Dar-es-Salaam there is now both a private University, the International Medical and Technological University (IMTU), which is interested in including CPC in its own curriculum and a specialized INGO, the Elizabeth Glaser Paediatric Aids Foundation (EGPAF) which the Fund has been collaborating closely with in order to promote CPC throughout its whole country programme. PASADA has done well to secure five year PEPFAR funding for its work on HIV/AIDS, though funds are only released each year on the basis of an annual work plan. The senior management is aware that PASADA s role as a Beacon centre for CPC should assist it in mobilizing funding from other donors, which must be an important long term strategic objective given its current dependence on PEPFAR. Progress made by the Beacon Centre-PASADA Over the last three years, the navigators have clearly grown in confidence as trainers, and 71 people have started the six-month course, but 45 of these have come from PASADA itself. Generally the students who take on a course like this in Tanzania appear highly committed, and only four trainees have dropped out so far. 27 of the PASADA trainees have completed the course, while 18 are yet to graduate. Trainees within PASADA appreciate being able to improve their communication skills with children, especially to help children who are HIV/AIDS positive come to terms with their status as they get older, but there is little need for end-of-life care for children: in the last year PASADA treated 35 very sick children, of whom five died. Thus trainees from outside institutions who are placed in PASADA get good experience of their OVC programme but much less exposure to end-of-life care. One problem encountered in Tanzania has been the difficulty of identifying appropriate staff for the six-month course, with some trainees at the start lacking a basic understanding of PC. The navigators reported in 2011 that most of the trainees did not have sufficient knowledge of palliative care in general, let alone children s palliative care. Many trainees did not even know what palliative care was and the differences and similarities between adults and children s palliative care. Therefore, many questions were asked about palliative care. However those staff who have completed the training in PASADA note an improvement in their ability to communicate with children, in team work between staff, and a greater understanding about the importance of spiritual issues and play. For the PASADA staff, the written assignments were a challenge, but the Page 16 of 41

17 trainees got support from the navigators, and so far there seems to be a remarkably high pass rate, mainly because of the strong encouragement given by the previous Director, Mary Ash, but also because PASADA staff were able to use office computers for their written assignments. A problem for the many PASADA staff who have done the course is that only parts of it are relevant for them, as they rarely see very sick or dying children in their normal daily work, as these cases are normally transferred to Mihumbili Hospital. Some of the trainees from outside PASADA, mainly nurses, do not have access to computers. This group has had to hand-write their assignments, and pay for a computer bureau to type them up and copy them to a USB stick, all of which can cost up to TZ sh. 75,000 ($50) which is quite a high amount for someone on a government nurses salary. One solution might have been for trainees to have hand-written their work but this option was not considered. An important lesson arising from this experience is the need, when planning courses involving distance learning, to be realistic about trainees access to, and knowledge of, computers. At PASADA the evaluation team were able to observe a clinic for children and found that standards of communication between the medical staff, children, and their parents were high. Children received a drink and biscuits whilst waiting, but there were no toys or pen and paper, though the Fund had supported the purchase of these. We were told that all the toys had been taken to an outreach clinic that day, so clearly the overall supply was inadequate. All of the most acute CPC cases in Dar have now moved from the Ocean Road Cancer Hospital to the Paediatric Oncology Ward at Mihumbili Hospital, which is better equipped to handle such cases. It is clearly more difficult to offer staff from this ward a placement that they feel is equally challenging compared with their place of work. The nine staff trained from Mihumbili (mainly nurses, but with one Assistant Medical Officer) expressed some frustration as they found nowhere to go for their placements where they could learn any more about CPC than what they face every day in their own institution. Generally the trainees from outside PASADA felt they received a lack of feedback from the navigators as regards their written assignments: the most extreme example of this was that the trainees of the 2011 course who had completed the exams in October were still awaiting their results when this report was written in May We have already raised this issue with the Fund and assume that it has now been sorted out. Generally we found that there was less supervision from navigators in Tanzania for trainees from outside PASADA compared to trainees coming from PASADA itself, and the students from ORCI and Muhimbili Hospital which are both in Dar would have liked more visits. For trainees from outside Dar the navigators should see it as part of their remit at Page 17 of 41

18 least to provide support over the phone to help students implement what they have learnt into practice. In Tanzania the clinical placements were appreciated, but could have been made much more useful with more ward based teaching, which would be possible if students did placements in smaller groups of two or three, rather than groups of 10, which Mihumbili at least found difficult to cope with. The Children s Palliative Care in Africa textbook is clearly highly valued by trainees. We understand that the first batch of trainees received these books free, but for later training courses it was decided that trainees should purchase their own copies. We are concerned that there may still be a considerable stock of books which could be really useful to past participants, as so far only 16 copies have been sold in Tanzania: a few more copies have been donated to relevant hospitals, but are not made accessible to staff. 8 It would be useful if there were copies of this book available in all hospital libraries, and possibly given to participants. Tanzania: Conclusions and future prospects: It is important that the senior management at PASADA continues to provide strong support both for the CPC project and the navigators, both during 2013, and afterwards when they will no longer be receiving financial support from the Fund. One small example is the provision of training facilities. PASADA has land and plans to develop a training facility but in view of difficulties in securing permission from the government, this has not made any significant progress over the last three years. At present when the navigators are planning any training course they have to spend both time and money in identifying and hiring suitable premises. Yet there is a conference room in PASADA large enough for training purposes for groups of 20 people or so, which we think could easily be used for training with some internal relocation of other meetings In relation to children s palliative care, Tanzania has started at a much lower baseline than Uganda with far less institutions offering CPC. In spite of the difficulties mentioned above the Tanzania navigators have, with only limited mentoring support, managed to train over 70 people both inside and outside PASADA, and have captured the interest of participants. In particular those who have completed this course are now committed to the principles of CPC, communicating with children and now feel more confident about breaking bad news to them. Best practice in relation to communication with children is now pervasive in the children s clinic at PASADA, and there is a great desire to develop CPC further at the children s cancer ward at Muhimbili. There is a lot of opportunity to spread this further as children s oncology in Tanzania is 8 The copy of the textbook given to ORCI ended up in the Director s office, and was not made available to other staff. Page 18 of 41

19 developing fast, with plans to expand services rapidly to other centres across Tanzania. It is important not to hamper the growing linkage between CPC and Paediatric Oncology by tying CPC too much to HIV/AIDS related work: PASADA needs to decide whether they are able to invest in taking CPC further afield, or if they will focus on training others who will then develop it themselves. In view of the considerable travel burdens and time constraints on the navigators, we would recommend the latter strategy. In the future, PASADA could continue to have a useful role as a service provider in doing one-week Introductory courses, targeting relevant organisations, and ideally taking the course to them. While we envisage that PASADA could continue to run Introductory courses several times a year, we do not see it as cost effective to put on any more six-month courses after the completion of a course planned for ten staff from EGPAF later this year. After the closure of the Fund, in 2013 PASADA needs to consider how CPC training fits into their overall strategy and vision, and ideally they should focus on working collaboratively with other organisations, especially IMTU and EGPAF. Recommendations for Tanzania The navigators should organise one-week Introductory courses in CPC in a number of regional hospitals outside Dar, bringing together senior staff from District hospitals, perhaps in collaboration with the EGPF. The navigators should follow up with the private university IMTU in Dar about the possibility of providing inputs into their planned Diploma course in PC. The navigators should provide short refresher courses in the Dar institutions (especially Ocean Road Cancer Institute and Mihumbili Hospital) where they have now trained a critical mass of staff to which both the ex-trainees and their managers would be invited. The navigators should distribute all remaining copies of the CPC textbook as widely as possible, so that there is at least one copy available in every institution in Tanzania providing CPC, and aim to distribute all the books within the next six months. Page 19 of 41

20 Uganda The context In general PC appears to be advancing quite rapidly in Uganda, thanks to the influence of Hospice Africa Uganda (HAU) and a very active national PC Association, the Palliative Care Association of Uganda (PCAU). The Ministry of Health in Uganda also appears relatively supportive, and there is an increasing range of courses in PC available, including a Diploma course offered by HAU and a joint Bsc. Degree course offered by Makerere University and HAU. Performance of Mildmay as a Beacon Centre Like PASADA, Mildmay as an institution specialises in the treatment and prevention of HIV/AIDS, but it gives greater importance than PASADA to training, both nationally and regionally. Mildmay meets all the criteria for a Beacon Centre proposed by the Fund, and has given the navigators very strong support in promoting the six-month course. 70 trainees have now passed through this course and, until the end of March 2012, Mildmay has run one-week courses for a total of 69 staff in CPC across the country, and has also recently run an Introductory course in Zambia. As in the other countries, Mildmay felt that the sixmonth course was not really viable in the long term without official accreditation, and it has now formally submitted a request for accreditation for an 18-month Diploma course in Palliative Care. Given Mildmay s record of successfully accrediting courses, and their close links with the Ministry of Health, they are optimistic that this will be approved. The experience of trainees, both from Mildmay and outside institutions, who had completed the six-month course was similar to that of trainees in the other three countries, with many emphasising the intensity of the course and the difficulty of fitting in all the written assignments, as well as the special value of the course in helping them communicate with children (this was especially remarked upon by nurses working in the Mulago Cancer Ward). They explained how after doing the course they now talk to children directly, while before they often only talked to their parents, who sometimes misled them, especially for instance about when a child had last eaten a meal. All emphasised that the course had taught them about the value of team work. One said Before this course, we never thought about pain in children. All the trainees emphasised the strong support they had received from the navigators. The only criticism was that clinical placements needed to be better planned, as sometimes there were no children for them to see. Some trainees felt that placements required even more supervision and advocacy from the navigators. One outside trainee would have liked more support in caring for children with neurological disorders. As in Tanzania, some trainees felt that two weeks in class during the six-month course was not enough, and they would have liked Page 20 of 41

21 longer contact time with the trainers. They echoed the trainees in other countries in wanting the CPC course to become part of an accredited Diploma course. In terms of materials, all trainees valued the Children s Palliative Care in Africa text book, which they said we had to read from cover to cover for the exams, while another said it was like the Bible for me I used it all the time. There was a consensus that every trainee should be given their own copy of the textbook, as many found it hard to access on-line, and several said that they are still using it even after completing the course. Kitovu Mobile based at Masaka, Uganda offers comprehensive treatment, care and support including ART and palliative care for people living with HIV/AIDS. Most of the PC team have now been trained in CPC, but the administrative and support staff who had only done the one-week Introductory course felt it was too short. They appreciated the placements in Kampala and felt they learned something new in each place, especially at the Mulago Cancer Institute where they saw children with cancers for the first time. They feel able to put into practice what they have learnt, as a result of strong support by the management team at Kiovu, which also appreciates the value of the course. They have a positive view of the navigators, who were available and accessible by phone and and were always helpful. The navigators also came to visit the trainees in Kitovu, and talked to the senior management team about the training course. To get a senior management perspective on the impact of the CPC course in different institutions, we also met two senior managers from HAU, and one from a local NGO, Uganda Cares. HAU were clear both about the difficulties involved in releasing staff for the six-month course, but were very positive about the results. With eight staff trained they are now experiencing improved compliance to chemo-therapy schedules, and related this to their staff having a better relationship with children and their parents. They admitted that sometimes they did not always choose the best people to go on the course due to time pressure. They very much emphasised the importance of the short Introductory course in CPC for whole senior management teams. Generally, a pragmatic division of labour appears to be emerging by which Mildmay is becoming a lead resource centre in CPC while HAU leads on adult PC. It is encouraging that the two institutions are now able to co-operate in this way, and that there has been strong collaboration between HAU, PCAU and the African Palliative Care Association (APCA) in the development of Mildmay s CPC Diploma curriculum. Conclusions - Uganda Throughout this project Mildmay has done an excellent job. The navigators were well chosen and are respected. A particular strength is that they have built a good working relationship both with HAU and the other institutions sending Page 21 of 41

22 trainees on the course. There are still uncertainties about the extent to which the planned Diploma course in CPC, assuming it is approved, will attract sufficient numbers of either paying or donor-sponsored students to become self-sufficient. Recommendations for Uganda The navigators should distribute all remaining copies of the CPC textbook as widely as possible, so that there is at least one copy available in every institution in Uganda doing CPC, and ensure that almost all the books are distributed within the next six months. Until the end of 2013 the navigators should continue to focus on running more Introductory courses in CPC for a number of staff in the same or neighbouring institutions, especially in more remote locations in Uganda. Page 22 of 41

23 Part 2 Overall summary of findings and key lessons from the Fund s initiative to advance children s palliative care This evaluation has raised questions about the definition of CPC. The WHO definition is the physical, psychosocial and spiritual care for children facing lifelimiting/threatening conditions and related support for their families. The majority of children in OVC programmes in Africa clearly have significant social, psychosocial, and economic needs in addition to their physical needs, and staff trained in CPC need to have appropriate skills to help this large group of children. It is worth noting that the concept of suffering in Africa usually has a broader meaning beyond physical pain, and encompasses mental, spiritual, poverty and hunger, and there is certainly a need for all professional staff to offer children holistic care. But we need to be aware that this wider definition of CPC, including what is often called supportive care, while completely consistent with the WHO definition above, is different from a view held by some donors and INGOs that CPC is end-of-life care. It is also important to recognise that much of this type of supportive care is currently funded from HIV/AIDS programmes, the funding for which is likely to reduce over the next few years. As argued earlier there has been an important shift in the context since the Beacon Centre programme started: at the start the majority of children requiring CPC were dying from HIV/AIDS and related complications. With the increasing use of ART, this situation has changed dramatically. While a totally welcome development this means that outside the major city hospitals it is hard to find children in need of end-of-life PC. However one should not be complacent about this situation continuing into the future. In the long term a decline in funding for HIV/AIDs programmes, combined with supply chain problems in ARVs, and the problem of high drop outs from ART by adolescents in particular, may all mean an increased demand for PC. For the present, while we heard much anecdotal evidence about non-adherence by adolescents, we heard no reports of an increase in HIV/AIDS-related illness amongst this group. Currently the main group of children requiring end-of-life PC in institutions tend to have cancer and other life threatening conditions, but not HIV/AIDS. The six-month course In all three countries a great deal of effort has gone in to setting up, designing the curriculum, and running the six-month course in CPC. Our second internal report, written after a brief monitoring visit in January 2011, noted the danger of this course becoming an end in itself, rather than just one strategy for spreading the concept of CPC to a wider group of professional staff in each of the three countries. Since then, while continuing to offer the six-month course, all the navigators have also put great efforts into running the one-week Introductory Page 23 of 41