DEVELOPING CHILDREN’S PALLIATIVE CARE IN TWO … · Developing Children’s Palliative Care in...

DEVELOPING CHILDREN’S PALLIATIVE CARE IN TWO COUNTRIES - MAHARASHTRA, INDIA AND MALAWI - THOUGH AN INTERNATIONAL NETWORK Mid-Term Review

Developing Children’s Palliative Care in two countries – Maharashtra, India and Malawi – through an International Network

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Contents General Overview of the project ............................................................................................................. 2

Supporting the Development of Children’s Palliative Care in the Maharashtra State in India through an International Network (2010-2015) .................................................................. 5

Executive summary ................................................................................................................................. 5

Background ................................................................................................................................................. 5

Midterm Review Report ........................................................................................................................ 7

Methodology .............................................................................................................................................. 7

Evaluation Findings ................................................................................................................................. 8

Project Design ............................................................................................................................................ 8

Effectiveness of the model of partnership with National association and children’s palliative care expert site .................................................................................................................... 10

Effectiveness of the model of training followed by periodic mentorship ........................ 11

Collaboration between multiple partners and involvement of stakeholders in decision making and planning .......................................................................................................... 11

Effectiveness of Project Expenditure and Sustainability ........................................................ 12

Palliative Care Impact ........................................................................................................................... 13

Monitoring and Evaluation ................................................................................................................. 14

Lessons Learnt ........................................................................................................................................ 14

Feedback for the Future ...................................................................................................................... 15

Supporting the Development of Children’s Palliative Care in Malawi through an International Network (2010-2015) ................................................................................................... 16

1.0 Background .................................................................................................................................. 17

2.0 Overview of method/approach ............................................................................................ 18

3.0 Key findings................................................................................................................................. 18

3.1 General ...................................................................................................................................... 18

3.2 Project Design ......................................................................................................................... 22

3.3 Differences across the sites .............................................................................................. 25

3.4 Quality ....................................................................................................................................... 26

3.5 Training of care providers and skill mix ...................................................................... 27

3.6 Clinical outcomes .................................................................................................................. 29

4.0 Conclusions .................................................................................................................................. 31

5.0 Key Recommendations ............................................................................................................ 31

Appendix 1 – Questions used in semi-structured interviews across all three sites ..... 33

Appendix 2: Breakdown of beneficiaries and guardians that took part in semi structured interviews ........................................................................................................................... 35


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General Overview of the project In 2010 an advocacy project over five years was approved by the UK Department for International Development (DFID) to develop three new children’s palliative care programmes in hospitals in Malawi and in the Maharashtra region of India, based on model programmes in each country. The overarching objective of the project is to improve the quality of life of children facing HIV and other life-limiting conditions and life-threatening illnesses. The project partners are:

The International Children’s Palliative Care Network (ICPCN), which has

its head office in South Africa. The Palliative Care Association of Malawi (PACAM) and the Indian

Association of Palliative Care (IAPC). The Umodzi Children’s Palliative Care Team at Queen Elizabeth Central

Hospital (Malawi) and the Department of Palliative Care at Tata Memorial Hospital (India).

Help the Hospices UK (HTH). The International children’s Palliative Care Network (ICPCN) designed the project working together with Help the Hospices UK. The funding and overall oversight of the project lies with Help the Hospices and the technical oversight with the ICPCN. In both countries the national hospice and palliative care association, Indian Association of Palliative Care (IAPC) and Palliative Care Association of Malawi (PACAM) were responsible for employing the staff, managing the finances and in-country responsibility for the project. In Malawi the development was based on the Umodzi model developed by the Department of Paediatrics at Queen Elizabeth ll Central Hospital, and now part of the Palliative Care Support Trust. The three development sites selected were the three other Central Hospitals in Malawi- Kamuzu in Lilongwe, Mazuzu in the northern region, and Zomba in the southern region. In Maharashtra the model selected was the Tata Memorial Hospital’s Palliative Medicine Department‘s children’s palliative care programme. India selected three very different hospital programmes. In Lokmanya Tilak Municipal General Hospital at Sion in Mumbai, the project was integrated into the Paediatric HIV Clinic which is a recognized national Centre of Excellence. The second site is at a rural hospital in Jawhar, Thane, linked to four primary health care centres and a community programme. The final site is the Mahatma Ghandi Hospital, a public-private partnership hospital in Navi Mumbai with outreach into the villages.


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This project brings together partners from South Africa, the UK, Malawi and India to expand children’s palliative care services in Maharashtra state in India and in Malawi. The project results have prompted commitment to children’s palliative care service development above and beyond the original project scope. It demonstrates how international partnerships can inspire and promote others to take on palliative care to meet the huge need for palliative care around the world. Methods The project uses international donor funds to integrate children’s palliative care into existing services in urban and rural settings in both project countries. Each partner brings to the project distinct skills and experience:

As a worldwide network, ICPCN has extensive experience and expertise to draw on in relation to children’s palliative care. ICPCN’s role in the project has been to provide technical expertise and to strengthen and support the two national palliative care associations and local services involved in implementation and care delivery.

The national associations, PACAM and IAPC, have expertise in advocacy and awareness raising at national level in relation to children’s right to palliative care and relief from pain. They also play a key role in identifying opportunities to increase access to children’s palliative care training for health and social professionals.

The palliative care teams at TATA and Queen Elizabeth Hospital are pioneering the development of children’s palliative care in their health settings. The services they provide are models for other centres to follow and they have played a key role in the capacity building of health professionals from other health centres.

Help the Hospices UK has been supporting the development of hospice and palliative care internationally since 2001 through provision of grants and by working with international partners to access funding for palliative care projects. HTH supported partners in this project in the development of a proposal and provides on-going support in project management and reporting.

Results The mix of these skills has seen the following key results:

The development of children’s palliative care services in 6 new settings, 3 in each country, reaching over 1,900 children. These services are integrated into existing services in order to contribute to their sustainability.

The integration of children’s palliative care into health service curricula. In Malawi a training module on children’s palliative care, developed by PACAM, is part of the training programme at the College of Medicine. Palliative care for children is included in the training of nurses. The Maharashtra University of


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Health Sciences advertises a certificate course on its website and has included a 3-hour session in post graduate programmes.

The inclusion of children’s palliative care in draft palliative care policy. As a result of project activities, children’s palliative care has been included in in a draft Palliative Care Policy for Maharashtra State while in Malawi a section on children’s palliative care has been included in the draft national Palliative Care Policy.

The opportunity for children to have their wishes and feelings listened to. Through structured focus group meetings of children, they have been encouraged to speak openly about their personal experiences. In Malawi the children had the opportunity to meet with the Minister of Health and were promised her support.

The project has also prompted extended impact:

The National Rural Health Mission (in Maharashtra State, India) has committed to a wider programme of palliative care service delivery for both children and adults and is already funding training, staff and services.

District hospitals in Malawi are showing strong interest in developing palliative care services.

Project stakeholders are increasingly seeking extra funding and gifts in kind to support and develop children’s palliative care services.

The collaborative implementation of this project has proved to be a catalyst for further development of palliative care than originally anticipated.


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Supporting the Development of Children’s Palliative Care in the Maharashtra State in India through an International Network (2010-2015) A Midterm Review

Executive summary ‘Supporting the development of children’s palliative care in the state of Maharashtra, India’, is an initiative which aims to improve the quality of life for children living with life-limiting illness and their families in Maharashtra State in India. Multiple partners like the Indian Association of Palliative Care, Tata Memorial Hospital, the International Children’s Palliative Care Network and the Help the Hospices in the UK are involved and is funded by DFID CSCF. A midterm evaluation of the project was sought to look at both the approach and the impact of the project. Project exhibited a variety of clearly specified aims and objectives like increasing advocacy, increasing skill and knowledge in paediatric palliative care among health care workers, improving access to opioid medications and empowerment of children and their families. The project is operating in 2 sites in Maharastra (Sion Hospital, Jawhar Rural Health Service) and a new site at Mahatma Gandhi Mission Hospital at Navi Mumbai is proposed. The review found that the project is making a significant contribution to palliative care for children in the state of Maharashtra. The project is very well planned and it is being delivered with the help of a very dedicated and trained group of people. The project is well on the track and most milestones in relation to project targets are already achieved for the year 2013. A few recommendations based on feedback given by different stakeholders are a better medical management and end- of- life- care policy and training in the project planning, better coordination and support from the national organization and plan for a long term mentoring and support of the partners. The report is a summary of the findings of midterm review based on combination of questionnaires, interviews, visits and desk research to gather quantitative and qualitative data about various activities of the project.

Background Globally, children account for 6 per cent of all HIV infections, 17 per cent of new infections and 14 per cent of all HIV-related mortality (UNICEF). According to World Child Cancer each year more than 160,000 children die of cancer and in low-income countries typically more than 80% of young cancer victims die from their illness. “Palliative care for children is the active, total care of the child’s body, mind and spirit, and also involves giving care to the family. It begins when the illness is diagnosed and continues regardless of whether a child receives treatment directed at the disease… Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources.”- World Health Organization 2002. There are several barriers to the effective provision of CPC (children palliative care):


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In India at health policy and practice level there is a lack of knowledge and understanding of the real need for palliative care. But with Maharashtra state holding the fourth highest incidence of HIV in India, palliative care needs are extensive. CPC is not written into health, child rights legislation or HIV plans. Furthermore, it is not possible to effectively control and manage pain in children without access to essential pain relieving drugs, including opioids. In Maharashtra, strict licensing rules limit the use of morphine in children. Health and social care training colleges do not include CPC in training curricula and health care professionals are not receiving training in the relief of chronic and acute pain in children, or the effective use of the WHO’s pain ladder. At the national level, palliative care associations in India are already advocating strongly for a change to support palliative care. However, palliative care for children is not currently included in advocacy plans as a specific area for targeting. The centre in Mumbai are pioneering the development of CPC in their settings, yet they remain critically under-resourced in comparison with need, and do not have the capacity to use their knowledge to advocate for change. Focus of the Project ‘Supporting the development of children’s palliative care in the state of Maharashtra, India’, is an initiative which aims to improve the quality of life for children living with life-limiting illness and their families and carers in Maharashtra State in India. Scope of the Project The Indian Association of Palliative Care and Tata Memorial Hospital are the implementing partners for the project. The International Children’s Palliative Care Network provides leadership and guidance on technical aspects of children’s palliative care development and Help the Hospices in the UK maintains project oversight as the lead applicant partner. The project is funded by DFID CSCF. Project term The project started in October 2010 and will conclude in March 2015. Location The project is operating in 2 sites in Maharastra (Sion Hospital, Jawhar Rural Health Service) and a new site at Mahatma Gandhi Mission Hospital at Navi Mumbai is proposed to start by the year 2013. Partner organizations IAPC – Calicut Tata memorial Hospital – Mumbai ICPCN – South Africa Help the Hospices – London, UK. Output 1. National associations in India have increased ability to advocate for CPC (at

state level)


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2. Health care workers equipped with skills and knowledge to deliver CPC in Maharashtra State, India

3. Greater access to pain relieving medicines for children living with HIV and other life limiting conditions in Maharashtra state

4. Children with life-limiting illness and their families empowered to inform service delivery around the provision of CPC in Maharashtra state

Activities The project is implemented through the following broad activities:

1) Building capacity of the National Association, the Indian association of Palliative Care (IAPC) to advocate for children’s palliative care. The ICPCN and local expert partners Tata Memorial Hospital (TMH) equip the national association with knowledge and understanding of children’s palliative care.

2) The national association and expert partner identify and work with 3 sites to conduct training in children’s palliative care. The sites integrate children’s palliative care into their services, mentored by the project partners.

3) The project partners work with relevant educational bodies to integrate children’s palliative care into health professional training curricula.

4) Awareness activities are conducted to raise profile of children’s palliative care and increase demand for services.

5) Project partners actively working with policy makers and legislators to improve the relevant policy environment for children’s palliative care

6) Support and encouragement in the use of opioids for children 7) Workshops and focus groups held with children attending the services help to

empower and inform them in their health care choices, and also provide valuable feedback to the project.

Midterm Review Report The midterm review of the project was done by a visit to Tata Memorial hospital, Sion Hospital, Jawhar Rural Health Service on 19th to 21st March 2013. The review process involved both the process and impact and outcome evaluation. The specific objectives of the review were:

To assess the extent to which the project objectives are being met

To identify areas for program adjustment or strengthening to ensure objectives can be met by the end of the project.

To ensure mechanisms for sustainability are in place and effective by the end of the project.

To record and share lessons learned

To ensure effectiveness and efficiency in the program design.

Methodology The review plan was developed by the evaluator in collaboration with the project staff and with inputs from Help the Hospice by communication through emails, teleconferencing and phone calls


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Proper ethical guidelines were followed when conducting the evaluation like informing participants about the purpose of data gathering and how it will be analysed and how the results will be used, ensuring data privacy and confidentiality, obtaining informed consent wherever necessary, when analysing or reporting the qualitative data, being

careful about sensitive comments or those that may reveal personal

identities, obtaining necessary permission when approaching children and institutions (e.g., hospitals), being sensitive to cultural norms and beliefs etc. The following evaluation methods were incorporated in the review process:

Meetings and discussions with project staff

Participant Observation

Desk review and analysis of key documents above

Structured and semi-structured interviews

Focus groups / interviews with beneficiaries

Focus groups / interviews with key stakeholders to provide views and opinions

Review of project progress against objectives

Photographic record Main reference documents were project proposal, logframe, and annual project reports, including financial information, original baseline study and project quarterly reports

Evaluation Findings General / overall The evaluation found that the project is making a significant contribution to palliative care for children in the state of Maharashtra. The project is very well planned and it is being delivered with the help of a very dedicated and trained group of people. The project is well on the track and most milestones in relation to project targets are already achieved for the year 2013 (LOGFRAME CSCF 521 October 2012). A noteworthy positive impact of the project is evolution of palliative care awareness in general and a possible development of state level palliative care health policy for people living with life-limiting illnesses. “The biggest change which I have noticed is a perceptible change in attitude seen among staff and parents of Sion hospital.”- A social worker of CPC Project ‘Today around 50 children with developmental disorders/ CPs have come for the camp. They won’t have come if it was not felt effective. They feel cared for and they think we care for them. Project may or may not remain but patients and families will always remember us’- A social worker with the out-reach program.

Project Design Lokmanya Tilak Municipal General Hospital, Sion, Mumbai, one of the sites selected for the project is one of the Centers of Excellence in the country for HIV and AIDS in children. The CPC project focuses on a selected group of high-risk children with the eligibility criteria as the following:


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Orphans

Children developing opportunistic infection

Children receiving 2nd line ART

Children with HIV and TB

Chronically sick

Difficult in schools

Adolescent

Non-adherence The team in ART center consisting of doctors, a nurse, care coordinator, nutritionist, Redressel cell Volunteers and councillors is well sensitized to needs of children and their caregivers and palliative care. The two social workers are trained in palliative care. They are empowered to do focus group meetings of children and their caregivers, identify their problems and discuss with the rest of the team to address the issues. The focus group discussion of children (< 12years and 2-18 years group) and their caregivers are mostly oriented towards

Need assessment

Difficulties faced

Expectations from the services provided

Special needs of Orphans They are also trying to assess the impact of palliative care intervention by administering a QOL questionnaire to the patients. The work is supervised and mentored by regular visits from CPC project team members. A separate case record for palliative care is maintained by the social workers in the centre. Regular orientation of outreach workers and redressal cell workers is also provided during their visits. The team in general is highly motivated. So far, 87 children are enrolled in the CPC project. The vulnerable group who are probably missed out in this project is children who need end of life care for situations like advanced AIDS and other advanced life-limiting illnesses. They are either dying in the homes in the community or are admitted in other parts of the hospitals. As quoted by one of the physicians working in the ART centre, ‘Sometimes we follow up on children when they become very sick and get admitted. Otherwise, doctors in the hospital give the end of life care. We don’t see much pain in the ART centre but not sure what happens to those with advanced diseases. There is no protocol in place as to when to stop ART/ antibiotics or other active treatment.’ A lot of migrant children population are also not getting the continuity of care. In the proposed new site, it is expected that there will be wider coverage of many other life- limiting illnesses in the program. A lot of cultural beliefs and superstition is expressed as a barrier to effective palliative care for children. In Jawhar Cottage Hospital (JCH), children with range of life-limiting illnesses like CP, Developmental disorders, HIV and AIDS, Sickle Cell, Thalassemia and Malnutrition are seen in the community. Many get admitted in the hospital but otherwise they are followed up in their homes in the community until their death. The


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program in JCH is supported by the government agency called the National Rural Health mission (NRHM). The NRHM is providing the staff support to JCH by hiring a social worker and a doctor. The essential drugs like oral morphine are also bought by the NRHM. There are two trained nurses in JCH who are helping with regular data entering. The ASHA (Accredited Social Health Activist) workers are trained to identify the patients in the villages and to bring them to PHC. ASHA workers are given basic training in palliative care (one day training with a refresher course for a few). They also visit patients in homes. They are provided a basic medicine kit to provide basic nursing care. They are paid by the NRHM based on number of patients identified and brought and number of patients brought for follow up to PHC. ‘The bedridden patients are admitted in JCH. They are treated with drugs like pain- killers and other drugs and are provided health education and nursing care like care of the wound. The families are empowered to take care of the patients. The choice is given to them whether to remain in the hospital or to be cared in the homes.’- A Nurse, trained in palliative care. A regular focus group meetings are held where the stakeholders and beneficiaries come together and discuss and share. In these meetings, the patients and their families are encouraged to express their needs and concerns. ‘I need rest. If someone like a teacher can keep them engaged for a few hours, it will be so good. I feel sorry when see other children going to school and my child cant’ ‘Why don’t you find us a teacher who can spend time with our children’? Last year one teacher used to visit our Anganvadi and used to teach them for 2-3 hours. Children used to enjoy leaning and playing with them. Now that has stopped. We miss their visits’ – Grandmother of a 4 years old child with developmental disorder from Sakershety PHC, enrolled 3 years ago. It is difficult for patients and their families to come for regular follow up to both JCH and to the Sion ART centre as expressed by a couple of caregivers, ‘For each visit we lose our wages. If only the long hours of wait in the centre can be avoided’. ‘Travel to PHCs often require long distance and so much is money spent on the travel’

Effectiveness of the model of partnership with National association and children’s palliative care expert site The model of partnership between the National association and the expert site is found to be quite effective as is evident from frequent visits by the representative from the Indian association of Palliative Care (IAPC) to the project site and efforts taken by both in advocacy and education. The program is widely published in the e-hospice and the official website, http://palliativecare.in/cpc. Enough importance and coverage were given in the last few national and international conferences on paediatric palliative care in the form of workshops and seminars. There is still a potential for the IAPC to play a bigger role in national level advocacy and policy related to paediatric palliative care. The local expert group has expressed the need for more support and involvement of IAPC in their effort to bring the change both at state and in the country.

http://palliativecare.in/cpc


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Effectiveness of the model of training followed by periodic mentorship Volunteers and social workers are encouraged to undergo 8-days training in palliative care at TMH where the curriculum has a special emphasis on paediatric palliative care. The training is followed by 1-2 weeks of clinical placement. The staff of CPC provides the continuing mentorship by hands-on training and skill building by regular visits to both the site. Initially, it used to be 3-visits / week but now reduced to weekly visits. The general feeling among the health care providers in both the sites was that more on going and hands on training were needed. In the community outreach program at JCH, the ASHA workers expect regular refresher training 1-2 times a year and more widespread training to all the ASHA workers. ‘More training is required. We are unable to handle when family ask difficult questions. We are very uncomfortable dealing with death happening in the homes even though we are often called to attend’, says an ASHA worker. ‘More hands- on training is required for our new initiative in non-cancer palliative care’, says the Head of the Department, Paediatrics. For the effectiveness of the program at ART centre in Sion Hospital, the staffs expect more audio video aids like puppetry, demonstration, storytelling and posters for the children and the families and more networking and meetings with NGOs. However, there was a concern expressed by one of the paediatrician in Sion hospital about ensuring the quality and standards in the services provided by the health professionals. ‘There should be a restriction on who qualifies as a counsellor specially when dealing with children with disability. There should be a proper licensing system and quality assurance on the service provided’, says Dr Dalawai, Department of Paediatrics, Sion Hospital The positive impact is possible commencement of new courses in paediatric palliative care in near future like the one year Fellowship in Palliative care by the Department of Social and Preventive Medicine (Distance Education), Sion Hospital, which is expected to start in June 2013 and the Six Months Certificate course in Paediatric Palliative Care by the TMH

Collaboration between multiple partners and involvement of stakeholders in decision making and planning Even though multiple partners are involved in the project, efforts are made to involve all the partners in decision making and planning, as is evident from number of meetings held for different stakeholders. ‘There is a nicely created chain and no interference in reporting and finances’, says Dr Pradnya. ‘The program initially had a teething problem and there was a lag in the first year. The last one-year had been really fruitful. All the partners are involved in planning. Meetings are frequently held involving partners like NRHM, HODs, Government, MHSAC etc. thanks to efforts taken by Dr Pradnya’- Dr Mamta V Manglani, HOD, Department of Pediatrics.


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There are yearly and biannual visits by representatives from Help the hospice and ICPCN to provide the necessary mentorship, training and evaluation.

Many stakeholders mentioned Dr Pradnya Talawadekar, the Country Co-ordinator-

CPC as the main key person who is holding all the stakeholders together. The leadership role of TMH and the support of Dr Maryann Muckaden are also playing a crucial role in bringing different stakeholders together. Priorities of different stakeholders, including IAPC, are seen as one of the challenges in meeting the goals in expected timeline of the project. Constant involvement of different changing government officials is also perceived as a challenge especially when it is expected that the Government of Maharashtra adopts a stand on state level health care policy on paediatric palliative care. The communication between staff of local CPC project and IAPC office is found to be sometimes challenging because of reasons like language problem and different people involved in both places answering to different heads.

Effectiveness of Project Expenditure and Sustainability It is unlikely that the results could have been achieved at a lower cost or with fewer inputs. The success of the project so far has been supported through the buy-in and engagement of key stakeholders (as reported in the CSCF ANNUAL NARRATIVE REPORT, 2011-2012). The program has utilised the existing systems and infrastructures to implement the CPC project. At both the sites, the existing staff is trained and empowered to provide palliative care. The most significant area of community level empowerment has been among ASHA workers within Jawhar rural area. In addition, the NRHM has supported project scale up in JCH through training of existing HCWs and recruitment of dedicated palliative care health care providers, responsibility of salaries and drug provision. This approach has ensured sustainability in both the sites. “This is a model which can be replicated in any resource poor country with a shoe-string budget. The beauty is that it utilises the existing resources” – Dr Maryann Muckaden. The stakeholders have however expressed some concerns. Frequent staff attrition and change has posed a big concern for the program. The existing staff in Sion are overworked with the many responsibilities undertaken on behalf of MHSAC like doing HIV and ART testing, counselling, documentation, implementation, follow up etc. No extra remuneration is paid for the extra time spent on doing palliative care activities. Most of them are doing it out of their interest and dedication. The CPC member mentions that documentation needs repeated reminder and motivation. ‘If the CPC project stops, there will not be any motivation for the existing staff at ART centre in Sion to go on. Similarly, if the current head of the Department of Pediatrics at Sion retires/ changes, the project may not get the necessary support’, a concern expressed by the project coordinator. ‘The target is to enrol 200 children by next year but that also means more manpower is needed’ – Professor Dr Mamta V Manglani.


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The Nurses, MHWs and ASHA workers in the community are involved in many projects and overworked. The team in JCH suggests a dedicated team for palliative care just like many other successful focused government -led program like Leprosy and Tuberculosis control program. Dr Ramdas M Marad, Pediatrician and Chief Medical Officer of JCH also echoes similar concerns. He wishes a dedicated ambulance for the home-based care of the patients in the community. The only social worker employed by the NRHM project feels that he is unable to focus on his work because of multiple responsibilities like documentation, data entry, camp arrangement, medicine stocking, reporting, home visits and visits to PHC/ RC, motivation of staff etc. ASHA workers are not on full time payroll and if for some reason they can’t work, no wages are paid. Also, if patients identified by them are not eligible for PC, there is no remuneration. There is undue delay in in getting the payment. No payment is given for providing home visits. Dr Mrinal Marathe (Paediatric Counsellor) mentions development of a state level policy as the main priority to ensure sustainability and while planning allocation of resources, more funding should be earmarked for advocacy and media related activities. High risk of staff burnt among members of CPC project and partner organizations is another of concerns expressed by the country coordinator. The local CPC players consider leaving of Dr Manjeri who is responsible for many of the initial initiatives as a big setback. The staff of the CPC project is also worried about their own future and job security.

Palliative Care Impact The immediate impact is a significant increase in number of children receiving palliative care in Maharastra state. The target of is 250 (Sion, Jawhar) achieved in the year 2013 in which 40 % are girl children. 80% children in targeted areas of Maharastra state report improved quality of life. (Measured by reduced pain and improved ability to interact and play.) No of centres within Maharastra with an oral opioids licence has gone up to two since the inception of the project and the number of children prescribed strong opioids in two centres is 50(new). There are dedicated team members in CPC project who are regularly communicating with professional bodies like Indian association of Pediatrics and visiting pediatricians across the state imparting awareness and sensitization on pediatric palliative care. The number of Health care workers trained in children’s’ palliative care and opioid use (introductory and intensive courses) are 270 (new overall) with a training records from the project (with pre and post-test questionnaire analysis). Efforts are being made to develop a group of trainers by doing TOT courses.


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Intensive Sensitisation

Medical 54 81

Para-medical

54 81

In terms of advocacy and policy change, the draft document for change in legislation is in the process of translation to Marathi Language before the final submission to the Government of Maharshatra. A two volumes of Training Manuals on Pediatric Palliative Care, a joint initiatives by the IAPC and TMH, Information leaflets and booklets ,a 15 min short film on paediatric palliative care, rallies and cultural events, several media articles in local and national dailies are some examples of efforts at training, dissemination of information and advocacy. The Tata Memorial Hospital has adopted a ‘Child Protection Policy’ as a result of constant advocacy. The Indian Journal of Practical Pediatrics is planning to bring out a dedicated supplement on ‘Supportive and Palliative care’. Several meetings are held with bodies like AIDS control society, Ministry of Health in Government of Maharshtra, Municipal Corporation, Department of Food and Drug Administration, Central Ministry for woman and child welfare, IAP, several NGOs, disability and training institutes. As a result of positive outcome of CPC project with HIV and AIDS, an out-patient service, twice a week, has been initiated by the Department of Pediatrics for other life limiting illnesses. Departments like Nephrology and Neurology are actively linked with this service.

Monitoring and Evaluation The CPC project team has developed an adequate record keeping and data collection system. Efforts are being made to ensure adherence to time scale by the partners and adequate monitoring system. There seems to be an adequate clarity of arrangements for meetings and deadlines

Lessons Learnt This is a useful learning experience, which can be replicated in other places. The goals and objectives are very clearly defined and the team is very well trained in executing it with focus and clarity. They have acknowledged Kate’s and ICPCN contribution in getting this kind of mentorship and training. They also mentioned how they themselves evolved as a leader and learnt the skill of project/ proposal and report writing, executing it in a focused manner and the skill of advocacy. “Tremendous management and advocacy skills are required to carry out a project like this. But the lesson is persistence and tenacity.” – Dr Maryann Muckaden. The project is clearly helping to develop a palliative care health policy for children with life limiting illnesses in the state of Maharashtra as compared to other states in India where it is virtually non-existent.


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“If it were to be replicated in any other place, there should be a top down approach to make it effective. Currently, when we approach the government or the management, it is almost like it is our need. Legislation of palliative care is mandatory in all hospitals and clinics, both government and private’- Dr Mamta V Mangalani. Dr Mrinal Marathe (Paediatric Counsellor) also emphasise the main priority as the policy development if it were to be replicated in other places and separate funding should be committed to advocacy and media. The local partners have found the mentoring by HTH and ICPCN very useful.

Feedback for the Future A better medical management and end- of- life- care policy in the project

planning.

Better coordination and support from the National organization

A system for self-care among CPC staff and members of partner organisation

A plan for a long term mentoring and support to partners


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Supporting the Development of Children’s Palliative Care in Malawi through an International Network (2010-2015)

Executive Summary

Help the Hospices together with funding from the Department of International

Development have been working together with international partners to establish

and implement a four year programme to improve access, quality and awareness of

children’s palliative care in Malawi. The project is implemented by the Palliative Care

Association of Malawi (PACAM) with technical input from Umodzi Children’s

Palliative Care Service. The project is operational across three central hospitals

(tertiary providers) in the large towns of Zomba, Mzuzu and the capital city Lilongwe.

The project is at half way point and has commissioned an independent review

focusing on evaluating the impact and approach of the project, areas for

improvement and mechanisms for sustainability and lessons learned.

The review was delivered in March 2013, through a mixture of semi structured

interviews with coordinators’, staff, guardians and beneficiaries from all three

sites. The review also included discussions with PACAM staff and desktop

analysis of documentation and reports.

The review concludes that the project is delivering well and is online to reach the

targets set for 2015 ahead of schedule in most areas. The changes introduced

are integrated within the Ministry of Health provision and therefore likely to be

sustainable post project.

The collaboration between the partners works well, however the mentorship

provided by Umodzi clinic is weak and could be strengthened which could positively

impact on the variation in implementation across the three sites.

The development of advocacy and awareness of children’s palliative care has

increased demonstrably across all sites and within government, with PACAM

greatly enhanced and a strengthened profile.

Palliative care being offered currently is limited to central hospitals and a few

proportions of referred patients are able to access the care, expansion of such care

to district care facilities will improve access and quality and reduce the burden of

patients travelling. The current trend is that palliative care is available for those that

have knowledge about it, can access it with their own initiative. The service is not

yet demand driven.

The review identified a range of recommendations that could provide focus for the

final two years of the project; these include expansion of the model into district

hospitals, greater collaboration with Umodzi and standardisation of data collection

tools and sharing best practice across sites.


17

1.0 Background

The purpose of the project is to gain government commitment to providing

appropriate and effective palliative care for children living with HIV and other life

limiting illnesses in Malawi and India. This will contribute towards the goal of

improving the quality of life of children with HIV and other life limiting conditions in

Malawi and India. In Malawi the project is implemented through the following broad activities:

- Building capacity of the national association to advocate for children’s palliative care.

- The national association to identify and work with three sites to conduct

training in children’s palliative care. The sites integrate children’s palliative care into their services, mentored by the project partners.

- The project partners work with relevant educational bodies to integrate

children’s palliative care into health professional training curricula.

- Awareness activities are conducted to raise profile of children’s palliative care and increase demand for services.

- Project partners actively working with policy makers and legislators to

improve the relevant policy environment for children’s palliative care

- Support and encouragement in the use of opiates for children

- Workshops and focus groups held with children attending the services help to empower and inform them in their health care choices, and also provide valuable feedback to the project.

In Malawi the project is implemented by the Palliative Care Association of Malawi

(PACAM) with technical input from Umodzi Children’s Palliative Care Service. The

project is operational across three central hospitals (tertiary providers) in the large

towns of Zomba, Mzuzu and the capital city Lilongwe.

This review focuses on evaluating the impact and approach of the project in Malawi only. The specific objectives of the review are:

To assess the extent to which the project objectives are being met

To identify areas for programme adjustment or strengthening to ensure objectives can be met by the end of the project.

To ensure mechanisms for sustainability are in place and effective by the

end of the project

To record and share lessons learned and to ensure effectiveness and efficiency in the programme design.


18

2.0 Overview of method/approach The review was conducted by independent consultants to provide objective

analysis. Health Management Consultant Gemma Dawson together with Public

Health and Palliative care specialist Norton Gondwe from Malawi College of

Medicine worked together combining management and clinical perspectives to

deliver the review. The review was conducted using a variety of different methods;

Reviewing current project documentation (including finance information, annual reports, Log frame and proposal documents)

Interview and discussion with PACAM senior staff about the project

Interview and discussion with Umodzi senior staff about the project

Structured interviews were conducted with the identified co-coordinators at

each of the central hospitals, with questions based around the reviewing criteria.

Structured interviews were held with two members of clinical staff at each

central hospital that has received the palliative care training as part of the

programme, these individuals were identified by the co-coordinator.

Structured interviews were held with three sets of children in receipt of the

services and their guardian at each of the central hospital sites. Some were

conducted in a group setting whilst others in privacy, dependent upon the

beneficiaries preferences.

Visit to the clinic room dedicated for children’s palliative care to observe

and look through the data monitoring and collection services at each

hospital.

Observation of patients assessment and care planning

A single day was spent at each hospital at the end of March 2013.

3.0 Key findings

3.1 General The following table is based on the agreed Log frame for the project. It includes just the

indicators relevant to Malawi together with an additional column providing progress as of

April 2013, mid-way through the project. It is colour coded using traffic light system to

provide at a glance reference on progress against agreed timeframes. Green represents

on track, amber working towards and red issues with progress.


19

Mid Term review against Log Frame CSCF 521 Malawi

Goal/Outcome Indicator Baseline Milestone1 Milestone 2 Target 2015 April 2013

Improvement in Level of Malawi 2012 2013 Evidence of All sites have

the quality of life national CPC shows Evidence of Evidence of broad CPC developed integrated

development evidence of localised integration provision, provision; however

of children with

(as measured capacity CPC into health with training there is variation in

HIV and other life

through building in provision and care and plans for the size and scope of

limiting conditions research children’s availability services. service provision.

in Malawi conducted by palliative of training. development On target as Milestone

ICPCN) care. by 2015. 2.

Government 1 .No of 1 Umodzi 2012 2012 end 4 Achieved provision

commitment to government Kamuzu Zomba and (Kamuzu, across all sites ahead

centres

Hospital Mzuzu Zomba, of the 2015 target.

providing

delivering delivering hospitals Mzuzu and

appropriate and

CPC in CPC delivering Umodzi) sites

effective palliative Malawi CPC delivering

care for children CPC

with HIV and 2. Level of CPC March 2011 March 2012 National Draft Palliative care

inclusion of included in 3 meetings Draft policy palliative policy document has

other life limiting

CPC in national with Ministry revisions to care policy been produced which

illnesses in

national policy palliative of Health include CPC with strong includes strong

Malawi.

in Malawi. care CPC element emphasis on CPC. It

guidelines, approved and is now part of the

approved in operational. government’s

March 2012. timetable for comment

Development and adoption.

of policy is

planned but

needs

attention to

CPC.

3.Number of 40 children Dec 2012 March 2014 1000 (50% 540 children accessing

children received 200 (60% F, 700 (55% F, M, 50% F) palliative care 2012-

receiving limited 40% M) 45%M) 13 according to

palliative care palliative annual plan of which

in three sites care in 3 sites 259 females and 281

in Malawi through are male.

(disaggregated general Assuming cumulative

by gender and palliative counting, progress is

HIV/non HIV) care services. on target.

4. Children in No CPC April 2012 April 2013 Children 100% of children

Malawi report provided at 60% of 70% of reviewed interviewed as part of

reduced pain each site. 15 children children report the midterm review

and improved children reviewed reviewed improved reported reduced pain

ability to report pain is report report pain relief and ability to play.

interact and not well improvement improved and play. However this

play. controlled. in pain relief pain relief indicator is not part of

and play. and play. the collected dataset.


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Output Indicator Baseline Milestone1 Milestone 2 Target 2015 April 2013

National 1.1 Level of No inclusion 2011 2012 Implement- Clear strategy in place

associations inclusion of of CPC in Inclusion of Clear ation of the for CPC delivered by

CPC within advocacy CPC in advocacy strategy. PACAM, as

(IAPC & IAP) in

advocacy strategy of PACAM strategies for evidenced by

Malawi have

strategies of PACAM strategic CPC for advocacy activities

increased ability to PACAM plan. PACAM. carried out by

advocate for CPC PACAM.

1.2 Number No materials. 2011 2012 Advocacy PACAM have held

and type of Fact sheet on Journal materials events to co-

advocacy CPC need articles available in productively produce

material drafted in World Day print and web advocacy material

produced. Malawi. materials widely (e.g. Development of

and calendar distributed in educational material

published. three on Feb 6th

) and

languages. various awareness

sessions, this is on

target.

1.3 Number of 1 2011 2014 12 meetings Difficulties in gaining

CPC advocacy 3 meetings 8 Meetings with MOH minister commitment

and with MOH with MOH Task force and diary time,

sensitisation Task force Task force meetings (2 however one key

meetings with meetings (2 meetings (2 per year) event has been held in

government per year) per year) National Aids March with children,

policy makers National National Aid Association guardians and

and Aids Association (4 per year) ministers together

stakeholders. Association (4 per year) with PACAM.

(4 per year)

3. Healthcare workers 3.1 Number of 3 people 2011 2012 600 54 people trained, of

equipped with skills healthcare trained in 35 Clinical 30 Clinical sensitisation which 12 are Clinical

and knowledge to workers CPC in officers, officers and 30 CPC intro Officers and

deliver CPC in trained in CPC Malawi (1 nurses nurses 5 day course, Sensitisation occurs

Malawi doctor, 2 received 15 pain informally so no

clinical sensitisation management records of numbers.

officer) and morphine

3.2 Number of 2 in Malawi 2011 2012 19 (3 From the 54 people

health care (1 doctor, 1 Kamuzu +7 (Mzuzu) hospitals) trained, 33 are

workers clinical Hospital 5 Mzuzu Kamuzu: practicing palliative

providing CPC officer) nurses and 1 hospital 5 5nurses, 1 care giving a 63%

clinical nurses, 2 CO average training to

officer clinical Mzuzu: 5 practicing rate.

officers nurses, 2 CO However low rate of

Zomba: 3 CO practicing despite

nurses, 3 CO receiving training.

3.3 Level of Malawi 2012 2014 CPC being PACAM updated

recognition of College of Curriculum Sensitisation taught. palliative care training

and Medicine includes CPC of lecturers. module with inclusion

engagement in recognises of CPC that is now

CPC among CPC – included in the

professional proximity to training programme at

training Umodzi. College of Medicine

bodies. 2013 academic year.


21

Mid Term review against Log Frame CSCF 521 Malawi

Goal/Outcome Indicator Baseline Milestone1 Milestone 2 Target 2015 April 2013

Greater access to 5.1 Number of Limited 2012 2013 At least 30 33 practicing

pain relieving professionals prescribers – +15 +15 professional’s professionals

prescribing in part due to

now following training all

medicines for

morphine for fear around prescribing confident in

children living

children at the opiate use in morphine to prescribing, exceeding

with HIV and target sites children. children. the 2015 target

other life limiting already.

conditions in 5.2 Number of Stock outs Improved Reduction of No stock out Stock outs common

opiate stock are believed perception stock out days at any of and occurred during

Malawi.

out days at to be severe among key days by half. the three the review. Data is not

each hospital. as is a lack of stakeholders hospitals collected by the

data on the about the (Kamuzu, project therefore

full nature of seriousness Mzuzu, unable to measure

the problem. of morphine Zomba) affect of the project on

stock outs – stock out reductions.

resulting in

clear data on

stock outs.

5.3 No of 40 from 3 2012 2013 200 Due to data collection

children sites 100 150 variations no

prescribed 314 Umodzi prescribed prescribed confirmed but assured

opiates in the Use of liquid morphine in morphine in over 150 are

three sites plus morphine the 3 sites. the 3 sites. prescribed morphine.

Umodzi Averages from

quarterly data show

83% of those seen

were reported as

prescribed morphine.

7. Children with life 7.1 Number of 0 2012 2013 30 per year Quarterly meetings

limiting illness and children 30 per year 30 per year (50% female, held in every location

their families involved in (50% female, (50% 50% male) with over 30

empowered to inform focus groups 50% male) female, 50% beneficiaries and

service delivery meetings/semi male) guardians’ attending,

around the provision structured well above the

of CPC in Malawi interviews targeted levels.

7.2 Level of 0 2012 2012 2013 Evident that the

incorporation Messages Draft articles All published activities of PACAM

of children’s gathered materials are co-produced and

opinions into from focus include have strong roots with

advocacy groups children’s lived experience of

articles voices. beneficiaries and

guardians.

7.3 Voices of No such 2012 Children’s White paper Large event held in

children engagement Focus groups voices on children’s with policy makers

presented to in Malawi discussions recorded and experiences and ministers and

government in with children shared at of CPC children from all the

policy and MOH meetings presented to project held in March

discussions officials local and government 2013.children

(50% f 50% international presented various

M) issues to the minister

including the

availability of

morphine


22

Generally the project is progressing well against the targets in the log frame. However some

targets are already achieved with still two years of the project left, leaving room for further

development. There is potential opportunity to enhance the targets to achieve greater

impact within the final two years of the programme.

The project is on track to achieving the targets well before March 2015 with three exceptions:

The levels of Clinical Officers trained are much lower, although the total number of

trained staff members is more than exceeding targets outlined in 3.2. This is

explored in further detail in the training section of this report.

The target of 5.2 around stock outs is potentially unrealistic as the stock outs issues

are a national problem and the project has limited influence, or any activities

delivered or planned to affect the availability or potential priority of morphine stock.

Sensitisation within the hospitals has been varied and limited. Staff have cited lack of

time and resources to do any formal sensitisation wider than interested parties.

Therefore it is proving difficult to gain reliable figures on those sensitised and the

target of 600 sensitised could prove challenging or unrealistic.

3.2 Project Design 3.2.1 Access to Palliative care service

All services report good access routes and referral networks across the hospital, including

ward rounds either daily or weekly to ensure all children who could benefit from palliative care

within the hospital are identified and treated in the service. All services also report a growing

positive profile of children's palliative care evidenced by wards/departments referring to the

service. Patients with HIV and other conditions requiring palliative care are able to access

care through the service, however it is clear that the majority of patients requiring palliative

care, not already referred or inpatient at the hospital are not able to access care from these

sites due to project based in tertiary referral hospital only. Palliative Care co-ordinator, Kamuzu Central Hospital Lilongwe: "Yes there are still vulnerable people not reached, it is hard to estimate the proportion of children that come to palliative care as a ratio to the total number who need."

It was universally mentioned by all staff and guardians interviewed, including

representatives from PACAM that there remains significant unmet need and the feeling that

the majority of vulnerable children who could benefit from palliative care were not being met

through the project. The most common barrier cited for unmet children and those who are

accessing the project was travel. Central hospitals are located in large urban towns/cities,

majority of people accessing are referred from rural district health centres and therefore

have travelled great distances to receive care. This poses financial and time issues for the

family and children and issues in continuity of care as when faced with drug stock outs, or

follow up consultations, regular travelling is not possible or reliably made.


23

Guardian, Mzuzu:

“It is ok for me as I live in Mzuzu but others that live far away it is difficult. It should

be available in the districts and local clinics so that they can get access. Should be

all over , I am speaking for others that come from afar, if we could go out to the

districts to let people know about palliative care could save lots of children. Children

are dying, people don't know about palliative care so go to witch doctors as they are

ignorant. We should go out to the districts."

Establishing the project within central hospitals which require a referral from district or other localised institutions creates a barrier to access adequate palliative care services. Particularly when staff within district hospitals are not aware or skilled in palliative care in order to recognise and make a referral onto the central hospitals. Therefore it can be concluded that the design of the project within central hospitals creates a barrier to accessing palliative care.

Palliative care co-ordinator Zomba Central Hospital: “There are lots of people that have not been reached. More people need to be

sensitised to palliative care, to avoid long distance travel. They should get palliative

care in the district to avoid coming here to the central hospital." 3.2.2 Collaboration between partners There is evidence that collaboration with other partners outside PACAM is limited. This

limited collaboration could be attributed to low advocacy and poor attitude on palliative care

among individuals. Zomba service, based within the Physiotherapy department has

therefore developed relationship with disabled peoples organizations; 'Malawi against

physical disability’ and Digintas International.

The relationship with PACAM is strong and well developed across all sites, particularly with

the onsite co-coordinators and the Project Co-coordinator at PACAM. There is regular

communication and events and groups held are highly regarded, particularly the quarterly

advocacy and sensitization meetings with guardians and beneficiaries.

However apart from the initial training and clinical placement option all interviewed reported

no further support or mentoring from Umodzi service. The most valuable support received

from Umodzi was unanimously reported as the initial training. There appears to be no

ongoing communication between Umodzi on implementation since training or regular

supervision, which could explain the variations that have appeared in delivery.

The collaboration between partners (Ministry of Health and PACAM) appears to be working, where the partners are actively engaged, or have the capacity and resources to engage (such as PACAM). 3.2.3 Beneficiary and guardian empowerment/involvement There is maximum involvement of patients and guardians in the care planning, decision making

and all other issues surrounding care in all three sites. Guardians felt that they have gained

more knowledge on palliative care and are able to perceive the benefits. One challenge that

limits the involvement of guardians is distance to the facility as they have to travel long

distance to access care this has implications in reducing their involvement.


24

Guardian, Mzuzu: "I also know what to do when something happens and now he is always in school and not missing classes. I am involved in administering of the drugs, following instructions and ensure they have been taken. I enforce adherence according to the instructions that is why he is getting well now." We asked every guardian the question: “How empowered and involved are you in decisions

making about your child’s care?” to which 100% commented on feeling more aware, greater

understanding and therefore more involved as a partner in the medical care of their child.

Guardians frequently reported appreciation in the time taken to explain their child’s

condition, the treatment plan and how to administer drugs and how this reassured them and

made them feel confident ahead to deal with future exacerbations of their child’s condition. Guardian, Zomba: "We are given a chance to explain the problems and challenges; I take part in the care." Beneficiaries reported within the group sessions that they had good awareness of their

condition and were active members of the quarterly meetings held by PACAM. Guardians

and beneficiaries reported that they enjoyed the opportunity these meetings presented to

meet others in similar situations and discuss the issues pertinent to delivering children’s

palliative care, expressing only that they wished they were more frequent.

The interaction, time and empowerment have had a positive effect on guardians in

particular and have helped develop their general understanding and knowledge about

disease and chronic illness management. This is evidenced in the following quote from a

guardian in Mzuzu and is typical of responses found across all sites. This empowerment

particularly through knowledge is crucial in overcoming cultural barriers to accessing health

care (such as witchcraft, herbal remedies) resulting in children presenting at health centres

earlier. Guardian, Mzuzu: "We are empowered as we have knowledge about some other conditions and palliative care, we didn't know what to do previously now we do. The sessions at palliative care clinic is helped. At home people don't know. We should have more education, request a session on cancer so you can tell us about that."


25

3.2.4 Sustainability As the project is delivered by staff employed and embedded within the Ministry of Health,

the practicing staff members will continue to practice palliative care expertise once the

additional support and infrastructure of the project has finished. In that regard, a level of

sustainability is achieved, particularly across department s and divisions, ensuring good

penetration of expertise across the workforce.

However, although perceptions within the hospitals have been reported to have changed

positively since the existence of the project it is doubtful whether the continuing practice

will grow and any further service expansion independently of additional resources or

external support.

The achievements of embedding children’s palliative care training within the national nursing

curriculum will ensure that expertise is continued through the incoming workforce, but

implementation in practice across all healthcare settings could be slow without dedicated

support. It is too early to ascertain any evidence to demonstrate this new cohort practicing

palliative care from their initial training, not part of a dedicated project. Staff Nurse, Kamuzu Central Hospital Lilongwe: "There was real need in the wards and we kept having to fetch the palliative care nurses from the department so I asked if it was possible for me to be trained so that we didn't have to refer and we could support them on our wards, right there. Palliative care training helped me address the need in the ward that I was working"

3.3 Differences across the sites All sites are striving towards the same model of delivery: establishing or developing a

dedicated children's palliative care clinic that can take referrals from across the hospital and

support palliative care practice across the hospital. Variation in implementation occurs in

their various maturities towards this model. Kamuzu Hospital in Lilongwe is the most

established, with adequate space and resources dedicated to a permanent clinic. They

have established their own medicines cabinet to avoid referral to pharmacy and long waits

for patients. Mzuzu and Zomba share space with other clinics or departments, and suffer

from limited full time staff dedicated to the clinic. All locations use a roster to deploy the

trained staff from across the hospital to staff the dedicated children’s palliative care clinic.

However in Mzuzu where the dedicated clinic only runs one day a week there are

unintended positives as the lack of fully established clinic has resulted in wider integration

of trained staff and practicing palliative care professionals, with more palliative care being

delivered holistically on the wards as there is no ‘other’ clinic to refer too. The variation

highlights how important the design of the service and the impact of integration into hospital

services, Mzuzu although feels behind the others in delivery is ahead in wider integration

into mainstream hospital services.

A second major variation across sites is around data collection. The programme has not

identified single set of information requirements; therefore different information is collected

at different sites using a variety of different methods.


26

The sites mainly collect data manually in registers and then enter into the computer

retrospectively to compile reports for PACAM. Agreement around the requirement to

standardise data collection was recognised by all partners across the project and PACAM

taking responsibility to co-ordinate and take this work forward. Key alignment together

with the Log Frame data requirements is key to ensure the project can accurately

evidence the progress made.

All sites had the computer up and running, however there is clear training requirements

to ensure that the co-ordinators and all palliative care staff make the best from this

valuable resource. Again this issue was recognised by PACAM.

3.4 Quality Clinical observation was carried at Kamuzu Central Hospital on an assessment of a child

in the palliative care clinic. This observation demonstrated a high quality and a well

organised palliative care service that is able to address most of the patients and guardian

needs.

Thorough assessment of the patient’s physical, social and spiritual needs of the patients

and guardians is conducted in order to gain an insight of the problem and provide

appropriate care. The holistic needs of the patient, their caregiver/s and family, are

acknowledged in the assessment and care planning processes, and strategies are

developed to address those needs, in line with their wishes.

Treatment is provided according to standard treatment guidelines for Malawi. Patients

requiring morphine are able to access it with the relevant teaching on administration and

side effects and home management. Staff referenced the WHO best practice guidelines

for assessing pain and administering morphine.

Care is coordinated to minimise the burden on patient, their caregiver/s and family. Visits

are scheduling to provides opportunities for rest among patient and guardians

Through structured interviews with staff report that 100% were confident assessing and

managing pain, confident in palliative care to practice in other settings outside of the

clinic and 100% were confident with prescribing morphine.

Satisfaction as an indicator of the quality of palliative care services. It also aimed to

provide a solid basis upon which further work could be built. In this evaluation Patients and

guardians as well as care providers clearly indicated that they were satisfied with the

Palliative care service on offer

There were some differences in the perception of satisfaction between

patients/guardians and nurses. Nurses felt that they had partial satisfaction due to limited

resources while patients and guardians felt maximum satisfaction due to the fact that

their problems have resolved and are pain free.

Staff members expressed frustration, particularly around the unavailability of necessary

drugs to treat patients and the inequity of drug costs on the open market, where

patients were forced to purchase in the event of stock outs.


27

3.5 Training of care providers and skill mix Most of the care provider’s currently providing palliative care have undergone the five day

CPC training from the project to equip them with knowledge and skill relevant for the

delivery of palliative care. This has an impact in improving the quality of care at the facilities.

Team meetings help to strengthen the palliative care team in the delivery of palliative care

service. Availability of providers from different wards/departments help to ensure that most

patients access care from where they are and there is a wide variety of skill mix relevant for

the delivery of Palliative care. It is clear that incorporating palliative care in the existing

hospital teams is the best way to go in this era of shortage of health care workers.

Provider training and mentorship followed by clinical placement is an ideal approach in

increasing altitude of providers, exposing them to various clinical skills and knowledge

about palliative care, Majority of providers who have undergone placement recommended

clinical placement in palliative care as a model of teaching and learning.

Each site has delivered successfully the five day training targets as laid out in the log-frame.

However, there was interesting discrepancy between the trained and practicing staff levels.

From staff trained (54) only 33 are recognised by the project co-coordinators to be still

practicing palliative care in the hospitals. This varies across sites, with Mzuzu Central

Hospital reporting 100% practicing from trained staff to just 44% in Kamuzu Central Hospital

Lilongwe and 45% at Zomba Central Hospital. Produces a 63% success of trained staff

practicing average for the project, which is an area for improvement to ensure maximum

impact and value for money from training resources.

Table 1: Training by designation of Children’s Palliative Care 5 day course

Designation Mzuzu Lilongwe Zomba Total

Nurse 3 14 9 26

Nurse/Midwife 3 0 0 3

Pharmacist 1 0 1 2

Clinical Officer 4 1 6 11

Medical Doctor 3 0 2 5

Dermatology Officer 1 0 1 2

Dental Officer 1 0 1 2

Physiotherapist 0 0 2 2

Total 16 15 22 53


28

Figure 1: Malawi staff trained in CPC by designation

4% 4%

4% Nurse

Nurse/Midwife

9% Pharmacist

49% Clinical Officer

21% Medical Doctor

Dermotology Officer

5%

Dental Officer

4% Physiotherapist

Variation occurs in how staff are selected to take part in the training and therefore the

designation of staff partaking. Feedback through the interviews from questions around

training and improving the perception of palliative care, demonstrated that Clinical Officers

have limited capacity to deliver palliative care and that the majority of delivery is by Nurses.

This provides some explanative narrative; perhaps the Clinical Officers represent the trained

staff not practicing deficit? This not only presents a barrier to gaining maximum impact from

trained staff, achieving the target volumes of trained Clinical Officers but also outlines

further work to demonstrate the added value and potential time saving from delivering

palliative care instead of other more conventional interventions.

Palliative care co-ordinator, Zomba Central "We selected people for training from across all the departments to get coverage across the hospital."


29

Figure 2. CPC Trained staff vs. CPC trained and practicing staff

25

20

15 Trained

10 Practicing

5

0

Mzuzu Lilongwe Zomba

Palliative Care expansion Palliative care being offered currently is limited to central hospitals and a few proportions of

referred patients are able to access the care, expansion of such care to district care

facilities will improve access and quality and reduce the burden of patients travelling. The

current trend is that palliative care is available for those that have knowledge about it, can

access it with their own initiative. The service is not yet demand driven. Mary, Guardian of child with palliative care, Zomba Central Hospital: "Health centres should have palliative care for children it is vital because a lot of people do their normal duties but they do not know about it, please train those staff at health centres about how they can support children with palliative. They need to be able to differentiate between children who have malaria and those with chronic illness."

However, there is some evidence of the palliative care practice expanding throughout the central hospitals, with other non-trained staff showing an interest and growing awareness.

Palliative care co-ordinator Zomba Central Hospital: "There are other staff that are interested but are not trained. We put interested people on the roster together with the trained people so they can see so on the job training. "

Co-coordinators at the central hospitals also reported changing perceptions towards

children’s palliative care by their wider colleagues since the project started. Other

colleagues displaying greater awareness, understanding and referrals to children’s palliative

care, particularly around the administering of morphine. It is difficult to measure the cultural

change, evidence remains anecdotal and subjective. However such a cultural shift is vital

enabler to wider palliative care expansion.

3.6 Clinical outcomes A number of outcomes have been observed during the period, there is improved patients

survival, maximum pain control, and reduction of symptom and suffering among patients


30

and guardians (Key aspects include symptom control, recognition and management of

psychological problems, good communication skills, and helping patients and carers with

financial and practical issues).

All of the children clearly pointed out that they are pain free and able to live normally, this is an indication of improved quality of life though living with a life limiting illness.

Guardian, Mzuzu: "I am very thankful for the services as my daughter’s life has improved. She used to

come to the hospital twice a month and would get admitted but since she has being

coming here she has not been in hospital."

Knowledge of disease conditions among patients and guardians has improved greatly. We observed children who are no longer afraid and have hope for life.

Currently patients with malignancy have access not only to oncological expertise to

maximise survival but also to a multidisciplinary palliative approach which focuses on how

best to support patients and their families through the illness while maintaining reasonably

good quality of life.

Single area that was identified across all sites, universally by staff and guardians was

around providing adequate nutrition as part of an effective palliative care programme. The

inability due to scarce resources and rising prices of food in Malawi compromises the clinical

outcomes for the children being treated. Nurse, Zomba Central Hospital: "Malnutrition is vital. We wish we could prescribe nutrition supplements."

Guardian, Kamuzu Central Hospital, Lilongwe: "It would be better if this is a disease for rich people, as condition affects diet and she can't afford the foods that the hospital recommends for example fruit. She wishes there was nutrition supplements."

31

Developing CPC in two countries - Maharashtra, India, and Malawi through an International network Midterm review

31

4.0 Conclusions In conclusion the programme is delivering good quality services but to low numbers compared to

the total need or demand for palliative care. The design of the project; based at tertiary tier

hospital, requiring referral from district hospitals restricts the service to top tier of most critical

patients restricts access to the service and therefore the impact. There us opportunity to impact a

greater number of people requiring palliative care if available at district level. Excellent palliative

care is best given closer to the community, with greater awareness of other environmental and

social factors. Furthermore:

The programme has performed well against the targets set, achieving the four year target

early in some areas, and is set to deliver sustainable improvements across the three

dedicated sites.

The collaborative approach of the project is working effectively between the Ministry of

Health Hospitals and PACAM; however more resource and support from Umodzi could

have positive impact on the project and support expertise sharing.

The project sites are achieving similar outcomes although through slightly different

implementation models, particular regard should be paid to the models that promote

further integration of children’s palliative care within the hospitals rather than creating

‘separate stand-alone’ clinics.

It is unclear the affect, if any, the programme has had on the stock outs of morphine and

other drugs and the ability the programme has to influence and affect this area. No

clear activities were identified that would tackle this issue.

5.0 Key Recommendations

The following recommendations are put forward:

1) Some targets identified in the Log frame are already achieved or close to being

achieved suggesting that there is scope to stretch some of the targets for 2015 delivery

to encourage growth of the project, or development of new targets for the final two

years of the project building on the achievements already made.

2) Further exploration and rationale developed to identify people eligible for training to

ensure they have a passion for palliative care to increase value for money and impact

and the ratio between trained and practicing staff.

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3) Further work to engage Clinical Officers, to encourage and show benefit in terms of

saving time by delivering Palliative Care as opposed to other more conventional

interventions

4) Further explanatory work to understand why those who have completed the training are

not continuing to practice, is there an additional training need or is there more work to

ensure the most appropriate people are selected for training.

5) Greater support towards sensitisation could yield greater impact – area of minimal

activities so far. Case studies, people changed their perceptions once they had a positive

experience, perhaps some case studies could be written up together with a photo to

encourage families and staff about the value of palliative care Resources to support wider

clinicians; guidance about morphine use to combat misconceptions perhaps fact sheets

could be produced and circulated or presentations made. Could this be a role for one of

the partners? Perhaps PACAM or Umodzi?

6) Augmenting patients home visit to the model will help to increase access improve care

continuity and lessen the burden of travelling by patients.

7) Review the periodic mentorship delivered by Umodzi, exploring more proactive regular

ways Umodzi can support the service development in other areas and the resources

that it may require to do this in a meaningful way.

8) Potential to look into providing subsidised transport for follow up consultations and

nutrition supplements as part of prescription to increase clinical outcomes of treatment.

9) Development of standardised data collection agreements that are realistic and

deliverable across the project to increase transparency.

10) Potential to duplicate the service model within district hospitals, perhaps in a certain area

(to form a pilot) or with a few in each area, joining up Central and district practice.

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Appendix 1 – Questions used in semi-structured interviews across all three sites

Mid-term review: Guardian/Parent and Child interview questions - Welcome and introductions - Interviewee name and village/town Guardian/Parent:

1. How is your child's life different since receiving palliative care?

2. How empowered and involved are you in decision making about your child's care?

3. What do you think could be improved?

4. What are the main challenges?

Child:

1. Since being in the service do you feel reduced pain?

2. Are you able to play more?

3. What do you think of your treatment?

Thank you Co-ordinator interview Questions: - Welcome and introductions - Interviewee name and profession

1. When did you complete Palliative care training?

2. When did you start in the role of co-ordinator?

3. How long have you been practicing palliative care?

4. How many staff in your hospital have completed palliative care training?

5. How many of the trained staff are practicing palliative care in your hospital?

6. Are all the trained staff in the same department?

7. What activities have you conducted to sensitise other staff in the hospital about

children's palliative care?

8. Do you hold frequent meetings where you discuss issues around children's

palliative care?

9. Do you carryout daily ward rounds of admitted/newly admitted patients to check

for palliative care eligibility?

10. What are the perceptions of other staff in the hospital about children's palliative

care?

11. Do you feel staff perception has changed during the project?

12. Do you feel the majority of children you treat for palliative care are living with HIV?

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13. Have you received mentor support from Umodzi?

14. What was the most valuable support you received from Umodzi?

15. Apart from PACAM and Umodzi who are the other partners you are working with?

16. Do you feel there are still vulnerable children not being reached by the project?

17. What could be done to reach more children with palliative care needs?

18. What challenges are you encountering?

19. Any other questions/comments?

Thank you Trained staff interview questions: - Welcome and introductions - Interviewee name and profession

1. When did you complete palliative care training?

2. Which department do you practice palliative care?

3. How did you find the palliative care training?

4. How confident do you feel assessing and managing pain?

5. Apart from practicing palliative care in this clinic, do you practice palliative care in

other settings or wards?

6. How confident do you feel prescribing morphine?

7. What are the main barriers to prescribing morphine?

8. What strategies could we use to combat these barriers?

9. Do you think the barriers are increasing or decreasing since the project started?

10. Have you received mentor support from Umodzi?

11. What was the most valuable support from Umodzi?

12. How empowered and involved are children and guardians in their palliative care

treatment/decisions?

13. Do you record details about children who receive palliative care?

14. What and where do you record information/data?

15. What strategies could we use to combat these barriers?

16. What could be done to reach more children with palliative care needs?

17. What challenges are you encountering?

18. What strategies could we use to combat these challenges?

19. Any other comments / questions?

Thank you

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Appendix 2: Breakdown of beneficiaries and guardians that took part in semi structured interviews

Name & Hospital Gender Age Guardian/Pare

nt

Gender

Zomba

Deborah Female 6 Mary Female

Chifumiro Male 8 Gertrude Female

Floney Female 5 Grace Female

Mzuzu

Gladys Female 8 Mother Female

Takondwa Male 7 Mother Female

Craig Male 17 Not provided Female

Kamuzu, Lilongwe

Eddina Female 6 Florence Female

Fishoni Male 11 Nyasulu Female

Myayiwawo Female 9 Mrs Gama Female

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