SINETHEMBA

-We Have Hope

A reflection by CAFOD Partners in South Africa on responding to children affected by HIV and AIDS

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SINETHEMBA –We Have Hope A Reflection by CAFOD Partners in South Africa on responding to children affected by HIV and AIDS Report prepared by Jo Maher The Zulu word Sinethemba means “we have hope”. Adopted by one of CAFOD’s partner programmes, Umnini Sinethemba, to express their vision for people to live in a world free of HIV and AIDS, it fittingly captures the aspirations and vision of all who contributed to this reflective consultation. Acknowledgements CAFOD thanks the organisations -the workers, volunteers, children, caregivers and their communities- that took part in the consultation: iThemba Lethu in liaison with Diakonia Council of Churches, Durban Umnini Sinethemba in liaison with Home and Family Life, Marianhill Izandla Zothando, Centocow Sinisizo, Durban Thandanani, Pietermaritzburg South African Bishops’ Conference AIDS Office, Pretoria Valley Trust, Durban KwaZulu Natal Interdiocesan Network, Durban University of Natal Thanks go especially to the participants of the concluding workshop and those people without whom it would not have happened: Anthony Ambrose and Emmanuel Modikwane, Emma Mortimer, Fr Stan Dzuiba and Nobukhosi Zulu, Marie Daniels, Richard Haigh, Sandy Naidoo, Terrence Chiliza and Nhlanhla Gedeon Ngubane, Tracey Semple, Mrs Ndaba, Jenny Boyce and Nhlanhla Mdadane, Helen Anthem, Jackie Reeve, Jo Maher and Ann Smith CAFOD 2006

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Contents P a r t I I n t r o d u c t i o n 6

P a r t I I F r u i t s o f t h e r e f l e c t i o n s : s h a r i n g s t o r i e s a n d g o o d

w o r k i n g p r a c t i c e s 10 1 The contexts of the responses to children affected by HIV 11

South Africa’s Context 11 The participating programmes 11

2 Identifying the concerns of children 15 Have concerns and needs changed over time? 16 How do you know what the concerns are? Who and what are your sources of information?

18 Continuum of children’s participation 18

3 Deciding on programmatic responses 23 4 The impact and effectiveness of the responses 27

Advocacy & children’s rights 28 Education & skills development 30 Psychosocial support 31 Physical Needs 33 Care & Treatment 37

5 Learning from experience and making changes as a result of the reflection 39

P a r t I I I M e t h o d o l o g i e s 42 The stages of the consultation and reflection 43 Field-based collaboration between development academics and practitioners 43 Extensive survey by questionnaires 45 Internal discussions and using existing processes 46

P a r t I V C o n c l u s i o n s 48 Key issues: 49

The participation of children 49 Welfare and development approaches 49 Institutional care and community based care 49

The process for CAFOD 49 Learning from and with partner programmes 49

The process for Programme Partners 51

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Part I Introduction

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Introduction The starting point of this reflection was a simple question: is CAFOD right to say we will not fund institutionally-based responses to children affected by HIV, such as orphanages or similar residential care homes?

CAFOD has promoted community-based responses since 1987 based on arguments of cultural appropriateness, cost-effectiveness and capacity that came from programme partners and from the very sparse published literature and news group discussions over the years. The arguments in favour of institutionally-based care have been gathering momentum in recent years, particularly from some funding applicants based in Southern Africa, who propose that the notion of the “extended family” no longer exists in areas particularly affected by HIV and AIDS. It has been argued that such traditional mechanisms can no longer cope with the immense burden of care due to the large numbers of dependent children and sick adults. Based on these analyses, proposed responses include large-scale institutionally based programmes and orphanages ranging from small to large. Rather than repeat without question our original funding criteria, and recognising that the pandemic and the communities it affects are constantly changing, CAFOD felt it needed to hear again from its programme partners and in a more in-depth manner.

Therefore we set out to ask our programme partners:

• In their particular context, what needs and challenges were presented by children orphaned and otherwise affected by HIV and AIDS?

• What needs or challenges did our programme partners respond to, how and why?

• What responses were effective and appropriate in their context and why?

From these questions we hoped to glean insights that would inform and, if necessary, reform our funding criteria. Initially a multi-country consultation was envisaged encompassing several CAFOD priority countries

in the Horn, East and Southern Africa. In the event, for organisational reasons, the consultation was focussed on South Africa and a number of CAFOD’s programme partners were invited to participate. Whilst the South African context is sometimes viewed as atypical within the continent, many of the partner programmes are community based organisations in resource-constrained settings: a situation which is comparable to programmes across Africa and beyond. For this reason many of the issues and experiences of the South African responses will resonate with people working with children in other countries.

Two words key to this work were consultation and reflection: The initiative was a consultation by CAFOD coming from our need to learn and act upon that learning. It was important that this consultative approach was carried through to participating programmes. Responses needed to come from the contributions of all groups involved in each programme.

The work needed to be carried out in-depth, over a period of several months, by each participating programme within its own geographic and social context. The fruits of this reflection would be shared, initially among all participants for our mutual learning, and over time within the wider circles of influence accessed by our programme partners and by CAFOD. This publication presents a summary of the findings of this work. These are not offered in any sense of claiming to be “best practice”. Rather they articulate what partner programmes have identified as good working principles that they would want to apply in their given contexts. They are offered in the hope that they might be of benefit to others working in resource-constrained contexts, even if the geographic locations differ.

While this report summarises the collective ideas around good practice for programmes responding to children affected by HIV, many of the participating organisations produced their own detailed accounts of the findings from the individual programme reflections. These are referenced at the end of the document and are available on request.

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The participating programmes

Seven of CAFOD’s partner programmes participated directly and indirectly with the process, and some engaged their partners or collaborated with external consultants.

Participating organisation

Programme focus of the Reflection

In collaboration with

Diakonia Council of Churches*

Diakonia’s partner: iThemba Lethu

Home & Family Life* Home & Family Life’s partner: Umnini Sinethemba

KwaZulu Natal Interdiocesan Network (KZN)*

Valley Trust

University of Natal

Izandla Zothando* Own programme

KwaZulu Natal Interdiocesan Network *

Valley Trust

University of Natal

South African Catholic Bishops’ Conference AIDS Desk (SACBC)*

SACBC’s ARV programme External consultant

Sinosizo* Own programme

Thandanani* Own programme

* CAFOD programme partner

About this report Part I introduces the rationale for the reflection and the participants. Part II charts the fruits of the reflections and follows the format of the core questions agreed with participants:

1. The contexts of the responses to children affected by HIV

2. Identifying the concerns of children 3. Deciding on programmatic responses 4. The impact and effectiveness of the

responses 5. Learning from experiences and making

changes A common pattern occurred during the course of the workshop. After sharing reflections and stories for each question, a number of Guiding Principles emerged and, in the case of the

methodologies in Part III, Experiences Shared were recorded. The guiding principles or experiences shared are at the end of each section. A number of the programmes prepared detailed reports of their reflections and these are available on request from CAFOD. The reflection methodologies used by the participating programmes are described in Part III. During the six-month reflection period the programmes implemented a wide range of methodologies to measure responses and impacts. This section details the programmes’ experiences of the strengths and weaknesses of the methodologies. The final section, Part IV, summarises the key issues that arise for CAFOD from the reflections.

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Part II Fruits of the reflections: sharing stories and good working practices

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1 The contexts of the responses to children affected by HIV

Reflection Point 1: The contexts in which your programme responds to children affected by HIV and a brief description of the programme

South Africa’s Context At the end of 2003 South Africa had a HIV prevalence rate of 21.5% (5.3 million) HIV positive adults and children.1 The epidemic is creating chronic illness and untimely death for successive generations of young and middle aged adults that can be expected to persist for much of the rest of this decade, if not beyond. The HIV and AIDS epidemics render up an unprecedented number of children without adult protection and care. In 2003 there were an estimated 1.1 million AIDS orphans in South Africa.2 It is presently estimated that approximately 16% of South African children will be orphaned by 2010.3 The epidemic is shifting the burden of child and family care upwards to older people, outwards to relatives, friends, neighbours or even strangers and downwards, to children themselves. In the process the family, the traditional institution of care and support for children, is being incapacitated as it strains to attend to even a modicum of the reproductive and productive needs that are demanded of it. Women bear the biggest brunt of the disease. They are disproportionately infected at an earlier age than men. In South Africa in the age group 15-24, prevalence rates among men were just under 5% compared to over 15% for women in 2003.4 Women also carry the lion’s share of coping with epidemics’ consequences. 71% of households with orphans in South Africa are female headed.5 They carry this burden on fewer resources because women are economically disadvantaged. The social and economic effects of HIV and AIDS are long term and myriad – impacting negatively on nearly every aspect of local and national life. At the household level the

1 2004 Update South Africa; UNAIDS/UNICEF/WHO 2 ibid 3 Africa’s Orphan Generations UNICEF 2004 4 UNAIDS 2004 5 Africa’s Orphan Generation UNICEF 2004

economic impacts of HIV and AIDS on families are felt prior to adult death and for years thereafter. It is estimated that Gross Domestic Product declines by 1% per annum where 15% of the adult population is HIV positive.6 Cumulatively the worst-case scenario prepared for the World Bank predicts that in three generations there could be complete economic collapse.7 It can be expected that poverty and inequality will grow in both absolute and relative terms.8

The participating programmes

In advance of the concluding workshop participants drew a picture to illustrate their organisation and its work with children. Some of the illustrations are reproduced here along with programme’s narrative descriptions of their work. The Valley Trust’s and KZN’s accounts of their organisations are also included.

Umnini Sinethemba The word ‘Sinethemba’ means ‘we have hope’. The vision of the organisation is for people to live a world that is free from HIV and AIDS. Umnini Sinethemba is located on the South Coast at the outskirts of Amanzimtoti. The area exhibits peri-urban characteristics and is situated close to a national road. The Umnini district has good infrastructure in terms of tarmac roads, electricity, railway lines and telecommunication, however, visits to the interior of some areas revealed typical rural characteristics. The majority of the population is unemployed and living in dire straits of poverty. A large percentage of the clients who visit Umnini Sinethemba are unemployed and complain about hunger, abuse, illness, emotional problems, orphan children and poverty. In addition, most of the households are single headed either due to AIDS related deaths or teenage pregnancies.9

6 UNFPA State of World Population 2004 Report 7 SA Reserve Bank “Labour Markets and Social Frontiers” October 2003 8 Excerpt adapted from “To Live a Decent Life: Bridging the Gaps” SACBC, September 2004 9 Adapted from Umnin’s Reflection Report by Thina Bhengu, Jesse Eganza, Overtoun Mgemezulu, Kalai Moodley, Chelete Monyane, Joseph R-Rukema and Sheetal Roopram, 2004

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Umnini established relationships with the Departments of Health and Social Welfare, Hospice and UNICEF. An office was constructed within a clinic for their use and some equipment donated. KZN Inter-Diocesan Network The Kwa-Zulu Natal Inter-Diocesan Network participated in the consultation by supporting

the organisations in the region, including Umnini. It oversees seven of the eight dioceses in the Ecclesiastical Province represented by the illustration of an octopus. (The eighth diocese is geographically remote and works with other dioceses in its area that come under a different province.) The co-ordinator is a link person who can put groups in touch with each for mutual support and also facilitates their access to resources and information.

Figure 1: KZN Interdiocesan Network’s work represented as an octopus

Diakonia Council of Churches and iThemba Lethu Diakonia Council of Churches is an ecumenical organisation working with churches towards economic, environmental and social justice. Diakonia’s reflection focussed on iThemba Lethu, a three-year school-based programme aimed at pre-adolescents in two Primary schools. The objective of the programme is to reduce HIV infection by reducing risk- taking behaviour. Risk-taking behaviour is reduced by children understanding that they are valuable and that they have a future destiny to fulfil so should start to make decisions now that would

keep them healthy. The programme is comprised of a formal classroom curriculum, after school support and counselling, weekly curricular youth clubs, a leadership mentorship programme including bi-annual leadership camps and bi-annual holiday clubs. In addition to this there is a supportive supplementary parent/caregiver programme and a teacher development programme. The iThemba Lethu HIV prevention programme is being implemented in Cato Manor a peri-urban informal settlement area in the greater Durban area in Kwa-Zulu, Natal. The socio-economic conditions are largely very poor with a very high unemployment rate. Cato Manor is home to approximately 120 000 African, predominantly Zulu speaking, people. The

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programme is implemented with approximately 300 primary school children and their caregivers. (Report on iThemba Lethu for Diakonia) Izandla Zothando Izandla Zothando (‘Hands of Love’) Centocow AIDS Project is based at the Centocow Catholic Mission in the area between Riverside and Creighton in KwaZulu-Natal.10 The area includes three tribal authorities and 46 villages. The organization was formulated as a response to the increasing prevalence of HIV infected youth as witnessed by Centocow Catholic Church under the tenure of Father Stanley Dzuiba. Estimates showed that 65% of patients admitted to the local St. Apollinaris Hospital, between the ages of 20-26 were infected. In addition, local responses at a village level to the epidemic, through government initiatives were lacking.

In an attempt to curb the rate of infection, Father Stanley initiated a home-based care workshop at the Centocow Mission in December 2000. 89 volunteers attend that programme and with funding and teaching support from the SACBC AIDS Office in Pretoria, Izandla Zothando was started serving two of the three traditional authorities, Amakhuze and Mdanzinkane, under Inkosi Zulu and Inkosi Dlamini. The project continued to grow in relation to the increasing demand for home-based care in these two traditional authorities and extended to Isibonelo traditional authority. By May 2004 IZ had expanded to 46 villages.

A series of objectives were designed and included issues of peer education; orphan care, home-based care; and income generation. These to date have shifted little although over time emphasis on particular components has changed. In 2003 issues regarding the relationship between the traditional authorities and the activity of Izandla Zothando within the domains of the three traditional authorities sparked a political furor. The Inkatha Freedom Party labeled the organisation an outreach of the African National Congress. Similarly, some traditional leaders (Amakosi) demanded decision-making rights within the organisation. The outcome was the merging of Izandla Zothando with FOSA (funded by the Aids Foundation primarily) in a community-based form of the Izandla Zothando. By the beginning of 2004, the organisation embarked upon a 10 Application for Funding for Izandla Zothando Centocow AIDS Project, Reg. No. 017-326 NPO 2003/01/20

process of transition; from the status of non-governmental organization (NGO) to a community-based organisation with a committee involving members of local traditional authorities, the Department of Agriculture and the Centocow Mission Thandanani The predominately Zulu communities in which Thandanani works all experience high unemployment. A large percentage of the population is below the age of 19 and therefore economically inactive, and the main causes of death are TB, pneumonia, diarrhoea and AIDS-related illnesses. In 1995, it was estimated that by 2004, there would be 450 000 orphans residing in KwaZulu-Natal. Although this cannot be verified, the figure is suspected to be an under-estimate, judging by infection rates in pregnant women. HIV and AIDS have created instability in the home lives of thousands of children. The pandemic impacts directly on the future of children, as education becomes unaffordable and malnutrition leaves the child physically under-developed and mentally unable to concentrate on schoolwork. Children are forced to leave school to care for sick or dying parents, and in some instances, older siblings. Following the death of parents children must accept a new caregiver into their home, or the family group is divided, with different siblings having to stay with different relations, often far from their home community. In other instances children remain in their homes and cope for themselves without any assistance from other family members. In theses child-headed households, children as young as 12 are forced to assume a parental role for which they are completely unprepared. Children from Child Headed Households are sometimes shunned by the wider community, seen to be lacking in discipline and guidance and therefore isolated. Thandanani’s work in the Pietermaritzburg region began in 1989 by responding to abandoned children in Edendale hospital. Thandanani now operates in ten communities in Pietermaritzburg and has assisted over 3000 children to date. It supports an extensive child education programme which includes direct support through the form of early learning centres, accredited training for volunteers and close working relations with the Department of Welfare. It assists families to access identity documents and the grant application process, facilitates foster placements for children in desperate need, provides bursaries and undertakes advocacy work to raise awareness

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of issues affecting children and to change legislation and policy.

Sinosizo

Sinosizo is the Zulu word meaning “we help”. The initial home-based care programme recognised the increasing number of children affected by HIV and AIDS, and the number of grandparents looking after grandchildren. The work has four distinct branches of responses:

Anti-retroviral (ARV), Training, Home Based Care (HBC), and Orphans & Vulnerable Children (OVC).

Figure 2: Sinosizo’s work represented as a tree

SACBC HIV & AIDS Office

As an agency of the Southern African Catholic Bishops’ Conference, the AIDS Office is the Catholic Church's response to HIV/AIDS in South Africa, Swaziland and Botswana and has links with the Bishops' Conferences of Namibia and Lesotho.

The Catholic Church has a network of more than 100 service programmes for people living with HIV and AIDS (hospitals, clinics, hospices, home based care, PMTCT and orphan care),

making it the largest service provider in South Africa after the government.

The office funds programmes in the southern African region -diocesan and small NGO projects, home-based care programmes, ARV programmes, training programmes and capacity building at local level. Special focus is on building the response to AIDS in the region and working among its women and youth.

The AIDS Office networks with many groups such as Caritas International, UNAIDS Interfaith Initiative, World Conference on Religious and

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Peace (WCRP), religious leaders, government departments and various NGO networks.

The coordinating function of the office is to share information, enable horizontal learning opportunities, facilitate training, capacity building and networking initiatives, and share good practice models. Activities include accompanying over 100 AIDS projects; assisting

with project management; facilitating healing retreats, various training and networking; involvement in advocacy networks - e.g. the Treatment Action Campaign (TAC), Alliance for Children Entitlement to Social Security (ACESS), National Action Committee of Children Affected with AIDS (NACCA), with special emphasis on children and access to treatment (from SACBC website www.sacbc.org.za/departments_Aids_desk.htm

Figure 3: SACBC AIDS Desk’s work represented as an umbrella

The Valley Trust The Valley Trust facilitated the reflections for both Umnini Sinethemba and Izandla Zothando with the University of Natal students. The Trust’s work focuses on communities and nutrition and agriculture and has a strong commitment to the learning and reflection cycle represented by the spiral in the picture. The Valley Trust was established in 1953 to complement the work of the Health Clinic set up in 1951 that focussed on improving the nutrition of the residents of the Valley of Thousand Hills near Durban. Various projects were established such as a demonstration vegetable garden, a Food preparation Unit to encourage correct cooking practices, a Home

Produce Market, a maize grinding mill and recreational facilities, all designed to address life-style deficiencies at the root of much disease. These acted as a referral system, whereby patients from the clinic were referred to The Valley Trust for agricultural and nutritional advice and assistance. This rapidly led to outreach activities into the reserve to assist with the establishment of home vegetable gardens and other basic amenities. Over the fifty years of its existence The Valley Trust has been able to expand its breadth of activities and is currently engaged in a wide range of community development projects designed to improve the health, quality of life and self-reliance of individuals and the community as a whole. (From the Trust’s website http://www.thevalleytrust.org.za)

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2 Identifying the concerns of children

Reflection Point 2: The concerns of children affected by HIV in your geographic area: • Have concerns and needs changed over time? • How do you know what the concerns are?

Who and what are your sources of information?

Have concerns and needs changed over time?

For most programmes the concerns and needs of children changed over time. All the different types of programme responses are documented in the matrix analysis tool below (Figure 4). The earlier and later analyses revealed varying degrees of changes. For two organisations, the issues identified later showed new concerns to the initial survey.

Participatory tool: sunburst diagram To illustrate whether there were changes in the concerns identified over time the workshop participants drew a sunburst diagram to show all the needs and concerns that their organisation recorded, both at the beginning of the work and now. They wrote “Children & HIV” inside the sun and showed the needs and concerns as the sun’s rays. By drawing a line down the middle of the sun information was divided between “then” and “now”

I’ve noticed starvation, hunger, a high rate of unemployment, and non-payment of school fees because of poverty.

Mhlanhla Ngubane Although the main objective was to focus on people with HIV/AIDS, counselling and performing home based care, the objectives have changed because the number of orphans increased day by day. People didn’t know about the Department of Social Welfare and we advised them of the criteria that they must follow and the main things that they need to register for the grant.

Zandile Mazibuko

It is difficult to do home based care and go to homes with just gloves and Vaseline when you can see the people are starving. We want to start the income generating programs.

Nuh Khuzwayo11

iThemba Lethu and Thandanani identified similar concerns as a result of their initial analyses but later discovered a new set of issues affecting children. For iThemba Lethu this meant adapting their response. But for Thandanani the new issues were identified alongside the existing concerns meaning their range of work expanded. To discover a completely new set of needs and concerns could have serious implications for an organisation if the response needs to be refocused immediately. But for all the organisations the changing concerns were identified gradually over time, allowing the response to adapt and re-prioritise accordingly. For both iThemba Lethu and Thandanani the different concerns are all identifiable under the broad heading of psychosocial care so the core focus of their work has not changed but the activities and priorities within psychosocial care have redefined. Identifying new issues reflects both the changing concerns of children and their families, but also the progression and development of psychosocial care responses. The original goal of the organization was to fight against the spread of HIV/AIDS through awareness, education and support to the chronically ill through a referral system. However, with the passage of time the programme began to include the recruitment of orphans, other health problems such as TB, and social problems such as rape and sexual violence into the identified goals. Most children in the community were orphans due to AIDS. Some orphans had to take care of their younger brothers and sisters resulting in many child headed households. Some children had to drop out of school in order to care for their dying parents. It was against this background that the overall objective of the organization changed. Umnini Sinethemba started providing counselling home-based care, grants application assistance and orphan recruitment. Consequently, the goal shifted from focusing on HIV/AIDS alone to a general aim of improving community lives.12

11 Umnini Sinethemba, May 2004 12 Umnini Sinethemba, 2004

Children & HIV

School fees Teachers Lack of adult care

then

now

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Participatory tool: matrix analysis As each organisation’s sunbursts were explained and discussed, the information was recorded into a matrix showing the needs and concerns “initally” at the beginning of the project and as they are perceived “currently” identified by different colours.

initally currently

Needs & Concerns Identified Thand SACBC Izandl Diakon Sinisiz Umnini

Family placements Stimulation therapy Supportive home environment Psychosocial support Risk reduction Poverty alleviation Caregiver support Bereavement counselling Support in caring for the sick Basic services Economic security Food security Access to education Security of tenure Life skills & self worth training Peer counselling HIV education Communication about sickness & death

Memory programmes Youth empowerment Safety in community Rights awareness Parenting skills for children Adult support Parental love Supervision Shelter Clothing Sense of identity & belonging Lack of capacity of extended family & community

Child headed households Lack of documentation Access to health services Play & recreation

Figure 4: Matrix illustrating concerns & needs identified

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Negative Passive

Positive Active

How do you know what the concerns are? Who and what are your sources of information?

The programmes reflected on how they received their information about children affected by HIV and AIDS. Much information was relayed in person from community members. Children were an important source of information and programme staff identified concerns themselves through their work. They also heard from church congregations, clergy & lay leaders, home-based caregivers & volunteers. Other information came through clinic referrals, hospitals and teachers, and government social workers and these were considered in general to be less vital sources of information.

Participatory tool: sunburst continued

Returning to the earlier sunburst diagram showing the concerns, the origin of the information was added. For example, the concern around lack of school fees was raised by teachers. The importance of each source of information was shown. In this case a prism was drawn around or next to the source of information and its size indicated its importance: the larger the prism, the more important the source.

For the majority of programmes the involvement of children occurs through specific activities. In several instances however, what they learn from the children is more of a by-product of the activity that they are focusing on and is regarded as incidental rather than integral to shaping their activities and interventions.

In other programmes, children’s responses – what they say and what they do- and their involvement is regarded as critical information and feedback to the success of activities or even the programme as a whole. And then there are programmes where the involvement of children is such that it shapes, and even sometimes determines, the direction and focus of programme activities. SACBC

The workshop participants used a scatter graph to evaluate which sources of information are most important to them and how frequently

they were consulted (Figure 5). Overall there was a correlation between the importance of the source and the frequency they were consulted. Children, volunteers, caregivers and community health workers were considered the most important sources of knowledge and information. From the graph it was clear that local councillors were disproportionately consulted compared to their relative low priority as sources of information. The reason for this is their position of influence and programmes seek their endorsement to increase their credibility and legitimacy in the eyes of government.

Continuum of children’s participation

From the discussion about how and from whom concerns and needs were identified Guiding Principles emerged (reproduced at the end of the chapter). Because of the priority given to seeking information from children, the issue of appropriate to facilitation of their participation was raised.

Participatory tool: continuum

To facilitate the participants in reflecting on the involvement of children in their work, key words illustrating how children feature were placed on a scale from negative to positive.

The participants in the workshop considered the varying levels at which children are involved in programmes and other activities. As a result of this reflection they developed their own model of children’s participation based on a continuum showing levels of children’s involvement in programmes. The Continuum of Children’s Participation reflects existing models like ICW’s Tree of Participation developed in 2005 which illustrates what ICW mean by “meaningful participation”. ICW’s Tree was adapted from Roger Hart’s Ladder of Children’s Participation developed in 1992. The Degrees of Participation is another model was developed by Save the Children which moves away from a hierarchy which aims to show good practice at varying levels of appropriate participation.

The Continuum of Children’s Participation developed by the partners emphasises the safety and vulnerability of children. Children are vulnerable to exploitation by adults who

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may or may not be aware of their position of power. The partners felt that children’s vulnerability is reduced the more sensitive, appropriate and meaningful their participation becomes. In addition to the particular vulnerability of children and young people, other key considerations are:

• Children’s freedom to choose whether or not they participate

• Seeking consent from caregivers • Making sure legislation and protocols

are not violated unwittingly

The continuum shows possible levels of involvement from negative to positive illustrated with examples of activities (Fig. 6).

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Figure 5: Scattergraph showing the importance of sources of information and how frequently they were consulted

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This chart is similar to any continuum of participation in development but with the added considerations of safety and vulnerability. Cross cutting issues: children’s freedom, consent, legislation & vulnerability. E

Figure 6: Continuum of children's par

Dec

easi

ng v

ulne

rabi

lity

Incr

easi

ng v

ulne

rabi

lity

Children’s

Development stage/ age specific

Gender specific

Child’s choice to participate. Children speak for themselves

• Making general assumptions

• Typecasting • Backing donors into

a corner e.g. “help us with these poor children or they’ll end up sniffing glue on the streets”

• Photos, images

• Consulting for your own conclusions

ACTIVE - POSITIV

Active participation in decision-making as

relevant

Meaningful involvement and

consultation

Children contribute input

Top-down interpreting children

from a distance

Stereotyping

Tokenism

Manipulation & coercion

E

contributions influence decisions

Increasing participation, involvem

ent, safety and trust

Peer influence & child to child

• Hearing, listening, two-way, open processes

• Personal interviews • Discussion & stories

• Observation of children:

• Watching children at play

• surveys

Decreasing participation,

involvement, safety and trust

• Children on show • Patronising attitude

PASSIVE - NEGATIV

ticipation

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Guiding Principles: For sourcing information and identifying concerns & needs of children

• Child participation is vital. It requires a safe environment, trust built over time and relationships managed appropriately and carefully for children to have equal participation with adults

• Be aware of your biases and power and the implications of these. Ask open-ended questions and be open to the responses that come back

• Ask what already exists and what is working. Map the wider human and natural resources already existing. This will help you see where your response can be complementary and reduce unnecessary duplication

• Be aware of the power of words: rather than focus on the ‘needs’ of communities, consider the ‘challenges’ or ‘concerns’

• Use existing networks and activities to raise issues that concern you

• When you carry out a situation analysis make sure you also think about its SWOT (strengths, weaknesses, opportunities & threats/challenges)

• Verify and check information carefully including with the children you are trying to respond to

• Consult government sources and find out services’ accessibility & availability

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3 Deciding on programmatic responses Reflection Point 3: The concerns responded to by your programme How do you prioritise responses?

How do you prioritise responses?

How were responses prioritised in the face of so many and diverse demands? As concerns changed over time, so did responses, with many programmes narrowing their range of activities (Fig. 7). This sometimes reflected a move towards specialising in certain types of responses, and was sometimes influenced by the availability of resources. For example, Umnini Sinethemba initially provided uniforms, food, shelter, and support to people to access grants and supervise children. Their focus became narrower and now concentrated more on the provision of grants and uniforms, particularly because resources such as grants and food parcels were particularly accessible. Uniforms remained a focus because of the priorities of donors who offered funding specifically to promote education. Umnini’s response also changed as a result of a natural progression of the work: the supervision of children developed and diversified to the provision of toys and play activities, and

developed further to incorporate life skills content.

Participatory tool: sunburst diagram & matrix

Sunburst diagrams were used again to illustrate the specific responses of the programmes. The reason for implementing each activity was also written onto the diagram. A second matrix was devised capturing the reasons for choosing the responses.

Several factors shape these intervention choices and decisions. The presence or absence of other organisations – government and NGOs - working in the field of AIDS and children in the areas where they operate also shapes the kind of work they do. Some organisations are forced to take on a multitude of activities because there is little alternative organisational response and the communities where they work are weakly connected. Others are able to be more selective because there are greater levels of organisational support and higher levels of social organisation in their areas.

SACBC

then now Responses Thand SACBC Izandl Sinosiz Umnini Education (uniforms) Food (DoW) Finance (accessing grants) Shelter Supervision of children Clothes Bereavement counselling Sense of belonging & identity Life skills Caring for the sick Support of caregivers, HBC volunteers & orphan carers Peer support HIV education Play Support from an adult Psychosocial support Safety & security Holiday programme

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Responses Thand SACBC Izandl Sinosiz Umnini Transport (to e.g. departments) Treatment including ARVs Foster placements Organisational capacity building Advocacy on children’s rights awareness Monitoring foster carers Security of tenure Stimulation & play therapy Memory programmes

Figure 7: Matrix illustrating which concerns the programmes responded to

The decisions to pursue particular responses or activities were based on a number of factors shown in Figure 8. There were no universally applicable reasons. SACBC’s consistency in its identification of concerns and responses is most likely due to it being a large umbrella organisation. Smaller organisations that focus on local areas may find that issues change or are newly identified over time in a small area. But concerns may not be so variable from a national perspective which might account for the consistency of SACBC’s identification of

them. SACBC’s consistent national response could also be explained by its establishment and experience. Having had long term relationships with donors it may be more possible to negotiate common objectives, or convince donors to fund the programme priorities. A smaller community organisation like Umnini may face less flexibility in how it responds. Because of its dependence on limited sources of finance it may find its work focussing on the priorities of donors.

Reasons for choosing responses Thand SACBC Izandl Sinosiz Umnini

Emergency relief (food & shelter) Part of long term development strategy (education) Rights of children (grants & support) Scale up response (capacity building) Structured family life (foster) Sustainability (treatment, ARV, education, grants) Voice for children (advocacy) Available resources (grants & food parcels) Donor influence & funding available (education) Natural progression (supervision, toys, life skills & play) Identified as high priority by children & organisation (transport, food, clothing, education, social services, PSS, play, monitoring caregivers)

Basic right Identified by research or organisation (sense of belonging & identity, peer support)

Directly related to existing core function (caring for sick)

Organisational restructuring Lack of resources to respond to other needs (access to tertiary ed, transport for recreation)

Lack of ideological support (support to pregnant youth) Principle (safe & nurturing environment) Increasing problem (child abuse)

Figure 8: Matrix showing the factors that influence responses

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Overall, rights-based issues were prioritised, e.g. children’s and their families’ entitlement to grants and financial support. Published research and the changing understanding of psychosocial care also affected the direction of programme priorities. Thandanani and Sinosizo incorporated the findings of external research that raised the need for a sense of belonging and for peer support. The fact that a problem was increasing, or increasingly visible like child abuse, was also motivation for initiating a response.

The reasons for responses becoming narrower in focus were also varied. Some were affected by organisational restructuring, refocusing on the strengths and expertise of the organisation. For others a straightforward lack

of resources meant that some activities were dropped, for example, access to tertiary education and transport for recreation. Izandla Zothanda found that the wider community opposed the proposed support to pregnant youths because it felt the response would effectively endorse and encourage pregnancy among young women. Izandla Zothanda described this situation as a lack of ideological support.

Recognising the need for collaboration with community and donors, but also the potential for conflict of ideas, the programmes developed a set of guiding principles to help them decide how they would respond to the diverse, and sometimes contradicting, demands placed on them.

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Guiding Pr inciples: For deciding a programme response • The programme has more chance of being sustainable if the project and the community

identify the same challenges and work together. If you are not starting from the same place, then begin with the community agenda as a starting point for negotiation and discussion to “reconcile” the NGO agenda.

• For the programme to be inclusive and collaborative it must work with gender dimensions, the most effective key players, different age groups, and the key affected people

• Decide whether your approach is one of welfare or development, or whether you are able to balance the two. If you are doing both, make sure people have clearly defined roles. Welfare is often an entry point and is also unsustainable. It might seem straightforward to progress to development work but sometimes this is difficult to achieve, especially when an agency finds itself doing both. Some agencies want to do both while some prefer to make referrals. Either way, be aware of what your role is and how it fits in with the wider response. If the organisation transitions from welfare to development, the skills of staff and volunteers need to change.

• Do not work in isolation from other groups or events or processes. This applies to individuals and teams as well as whole projects – work in co-ordination and collaboration.

• Learn and share with and from other groups in similar contexts, without being proscriptive. Accept that people work differently and always acknowledge and respect the other projects in the area. Ensure expert knowledge is part of the discernment and planning BUT not top down. You may think that an organisation could save itself some time and energy by doing something your way but it is important not to rob stakeholders of their own learning experience and decision-making.

• Use participatory processes wherever possible, especially when involving adults and children in decision-making and sharing of power. Identify what the outcomes mean in a given context, e.g. was participation really equal or meaningful?

• Accept different opinions, and sometimes know when to agree to disagree! Be prepared to explain your decisions as transparently as possible.

• Assess the gifts and strengths of your staff and volunteers so that you utilise and value them.

• Do not try to do too much and end up spreading yourself too thinly. Decide whether to stay small for quality or scale up (size) or scale out (replication). Sometimes it is better to accept the organisation’s size and capacity and focus on quality rather than quantity. Do not feel under pressure to expand because others around you are doing so.

• See the training of individuals as a process contributing to change (part of programme monitoring & evaluation) rather than training happening for training’s sake.

• Do not be prescriptive or judgemental. An organisation must demonstrate political neutrality (depending on the context and perceived bias this neutrality might be from the government, church, commerce, community, and local councillors).

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4 The impact and effectiveness of the responses Reflection Point 4: The programme’s impact so far • What were the outcomes? • What is the evidence?

What were the outcomes?

This sections details the challenging and constructive experiences of implementing specific responses and how their impact was measured.

Participatory tool: tree analysis To compare expected and actual impacts as a result of programme responses a tree was drawn to illustrate the activities (roots of the tree) and the impact that was expected (on the fruits of the tree) as well as those that were unanticipated. The tree analyses for the Advocacy and Physical Needs responses are reproduced in following pages (Figs. 9 & 10).

There was discussion about whether the actual outcomes were the same as the expected outcomes that were originally envisaged from the project’s outset. Unexpected outcomes like the development of guidelines for monitoring fostering carers resulted from the provision of shelter, while one of the intended outcomes of peer education work (that there would be a multiplying effect of children helping other children) had not yet been observed. For the purposes of sharing experiences, the actual outcomes were the focus of discussion and are recorded in the tables below. Unexpected or unrealised outcomes are reflected to a certain extent in the programming guidelines that emerged.

The challenges of childcare for orphans and vulnerable children need to be read against the positive impacts of these programmes. These can be quantified in terms of the number of food parcels distributed; children placed in families; counselling sessions; uniforms and school materials bought etc. These numbers matter and they are kept by many projects, often for accounting and monitoring purposes. Equally, it is important to recognise that numbers only account for part of the impact of

these programmes. The qualitative stories give us insight into how these numbers translate into individual, family and collective life. In many programmes qualitative information is collected informally rather than formally, which suggests that it is likely to be used in an ad hoc and unsystematic way, if at all.

SACBC

For the purpose of analysis and comparison, the responses of the programmes were grouped into the following categories:

• Advocacy & children’s rights • Education and skills development • Psychosocial support • Physical needs • Care and treatment

The five categories were loosely defined creating some ambiguity around which activities were listed under each. The workshop participants chose a theme that they felt they had particular experience in. And used their own definitions of the category and consequently their own interpretations of which activities fell under it. Hence some activities are referred to in more than one category. For example, lobbying schools is included in the Advocacy and Children’s Rights category because of the emphasis on the child’s right to education, and is also in the Education & Skills Development category. A technical distinction is not made between outputs (direct result of an activity) and outcomes (longer-term impact on the programme participants as a result of the activity). The programmes were asked to describe the “fruits” of their responses and left to interpret that freely. The term outcome is used here to describe those fruits.

The following section briefly describes the categories and offers the programming guidelines that emerged as a result of sharing experiences. Also recorded here is more detail of the activities that the guidelines originate from including their outcomes, and the evidence for those outcomes.

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Advocacy & children’s rights Advocacy is the process of influencing key decision makers and opinion formers. Children’s rights are closely associated with advocacy because children do not usually have access to policy makers. Organisations put pressure on local

authorities to provide services for free like education, and financial support especially in the form of foster grants. This is achieved through lobbying policy makers directly, and indirectly by raising awareness of the issues among the general public.

Figure 9: Tree analysis of Advocacy and Children’s Rights responses and their impacts

Activity

Outcome

Evidence

Provision of school material

30 new admissions to school Registers Receipts School reports Photos Case records

Referral to social welfare

More people informed & accessing grants Follow up on grant applications Increased number of foster placements

Referral register Confirmation of new applications from welfare (written) Monthly statistics & follow ups

Access to health services

Provision of immune boosters Refer sick children to clinic

File of recipients registers Case records which also includes confirmation of clinic services

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Guiding Pr inciples Advocacy & children’s rights

• Know what is available (i.e. grants and other services) & their access criteria. Ignorance of access criteria can be time consuming if inappropriate referrals and applications are continually made– make sure this sort of information is obtained and made accessible to those who need it

• Get to know the system & how to work it to your advantage

• There is no need to go it alone - join a national group or consortium for mutual support, for co-ordinated and synchronised approaches. Not networking and communicating with other departments can create duplication of work and waste valuable time and resources

• Be aware that you may have to manage a tension between public campaigning and more discreet advocacy: you may have to prioritise one strategy over another if they jeopardise each other

• Distinguish clearly between different advocacy goals e.g. gaps in the system as a whole and more narrowly pursuing entitlements to specific grants

• Lobby local municipalities (or whoever controls power locally). There is often a gap between general level policy makers & those at local level, so choose your advocacy targets carefully

• See advocacy as going beyond government departments e.g. target businesses and other sectors as well. Advocacy can sometimes be applied narrowly to welfare, health & education; don’t forget to broaden your advocacy work to other areas

• Establish & maintain contacts with key people

• Use high profile people (e.g. Cardinal or other influential people)

• Raise awareness of the issues through media

• Be creative & innovative

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Education & skills development A wide range of activities included lobbying for access to education, and some activities that could also be described as psychosocial care. Classification of activities into categories is not always convenient when they overlap themes.

Direct provision of materials and school fees were featured highly in this category and an emphasis on approaches to skills development that are inclusive and sensitive to children.

Activity

Outcome

Evidence

Lobbying schools to admit children

An increased number of children enrolled at schools

School worker and volunteers records

Providing school fees & uniforms etc

Better attendance at school Less stigmatisation Increase in children’s confidence resulting in improved equality of opportunity Increased dependency on the part of “family” members and a reduction in their taking responsibility

Children’s records Volunteers’ reports Conversations with children, letters Recorded increase in requests for assistance

Life skills Holiday programmes Support groups

Children more aware of their needs & rights Children more confident to vocalise their thoughts, concerns etc Improved coping skills

Conversations with children, observation of group discussions “Observation” of children’s interactions/ participation in activities

Financial support to school leavers

Capacity of young people improved resulting in opportunities for economic sustainability

1:1 conversation

Guiding Pr inciples Education & skills development Providing school fees

• Develop a supportive relationship with the school

• Have clearly defined criteria of eligibility to avoid misunderstandings

• Inform families & schools of exemptions from fees so they take responsibility to access them. There is a risk of both parents and government abdicating responsibility if they think that it’s the job of the project to pay school fees. Be aware that providing school fees can create excessive dependency for some families on the project

• Find other ways of supporting schools where children don’t pay fees e.g. parents work in the school in lieu or some families sponsor others if they’ve received their grants

Life skills & support groups

• Life skills and support groups require careful planning & children need to be prepared and know what to expect. Ensure facilitators are adequately trained and prepared or children will quickly lose interest

• Offer life skills to all children not only orphans so as not to stigmatise children who are orphaned, and for the benefit of all children

• Work with peer educators (either same age and gender, or exchanges between different social classes or peers from same social background)

• Use participatory approaches in workshops to engage and include children

• Too much focus on AIDS and HIV can be detrimental and children can tire of it, broaden and vary the content to address all life skills

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Psychosocial support This category included activities that are designed to improve children’s mental health and help them manage and cope with difficult experiences in their lives through expressing themselves. Bereavement counselling is particularly important to children who are, or

soon to be, orphaned. The wider family is included in aspects of psychosocial support as appropriate. Memory programmes are well-established processes of fostering communication about death between children and often within their families.

Activity

Outcome

Evidence

Art project Child headed households express themselves creatively & play Develop skills

Paintings, greeting cards Reports from volunteer fine arts graduate

Social services including bereavement & ID counselling

Group therapy with children Children can deal with loss & grief

Reports of sessions Observations from teachers & other role players Expansion of project into new communities

Outings & holiday clubs

Children’s right to play is realised Exposure to new environments

Events held quarterly Variation of venues Attendance register & indemnity forms Photographs

Eco therapy Peer counselling Bonding/ trust building

Psychologists report on trails, highlighting individual successes & concerns Follow up workshops Photos

Special events Children gather to celebrate childhood & listen to appropriate themes on children’s day Women’s day thanks volunteers & celebrates their service Pitfall: as with holiday clubs

Attendance Photos Registers

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Guiding Pr inciples: Psychosocial support activities

Art therapy & Eco therapy • Professional input is required • Activities that have few rules and restrictions and are fairly unstructured encourage creativity.

But make a clear distinction between recreational art & more structured therapeutic art • There can be erratic attendance by children especially through the school holidays

Bereavement counselling • One to one counselling is preferable to working in groups • A supportive home environment is necessary, so working with wider family is very important and

can be easier to encourage if the programme knows the family prior to a death • It is also beneficial to build links with other key community members (e.g. pastor, social worker

etc) prior to a death • It is important to talk about death with children before & during the bereavement but

counselling is not necessarily narrowly defined as “talking to children” • There are many Eurocentric ideas about bereavement counselling which can be insensitive to

local cultures & coping mechanisms. Make sure the methodology is contextually and culturally appropriate

Memory Programmes • The same advice applies as for the bereavement counselling above • Whilst it is good to involve the whole family it is not essential • It is beneficial to include all children in a school not only those whose parents are dying as this

reduces the possibility of stigmatising certain children, and improves communication about the issues with all children

• Taking the term “memory box” too literally and using structural boxes with a lock & key raised suspicion within families

Outings, holiday and special events (including eco therapy) • Get written permission from caregivers • Limit the size of groups • Have a high carer:child ratio (1:5) • Pay close attention to the needs of and recompense for volunteers • Keep good records - poor record keeping can mean that some children lose out while others get

more opportunities to take part • Be prepared to justify recreational activities by explaining the purpose of them. It can be hard

to get support for one-off events as they can be seen as a waste of money, either because it is a one-off event, or there is a general lack of recognition of children’s right to play or of their emotional needs and people think that the money would be better spent on food or education etc.

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Physical Needs The discussion around the experiences of responding to physical needs touched on providing food parcels or school uniforms. It also included providing food through establishing gardens with the additional purpose of income generating. However, it was

the subject of providing different types shelter that caused the most discussion. This was because of the variety of responses that it included – rebuilding and repairing, fostering, and institutional care.

Institutional or community-based care

As mentioned in the introduction, there is continuing debate about whether care for children based in institutions or in communities is preferable. Proponents of community-based care are concerned that a family environment is essential for children, and the most economically viable solution. Institutional care could be said to be financially unsustainable and not cost-effective because of the numbers of children that need care. However others argue that institutional care and orphanages might be necessary considering the inordinate numbers of children and families affected. The traditional coping mechanisms of families and communities are coming under too much pressure to manage, making the provision of more formal or institutional care vital. The discussion among the workshop participants concluded that the answer is not a case of either/or. Both institutional and community-based care have a place in a comprehensive multi-sector

response because of their different strengths and purposes. It is not easy to define them, neither is it simple to distinguish between the two types of care. Many responses fall somewhere between fostering a child by the extended family and the conventional large institution. South African legislation limits the number of children per foster home to six. This is because of the belief that this arrangement can provide a family atmosphere with consistent contact with adults, but without the anonymity and lack of identity that can be experienced when living with a much larger number of children. Participants in this consultation viewed institutional care as an option as an emergency place of safety, or a last resort. They felt it was not to be recommended as a long-term solution but could be appropriate for a child with special needs at a specific time.

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Figure 10: Tree analysis of Physical Needs responses and their impacts

Activity

Outcome

Evidence

Food parcels distributed & gardens

Physical growth & development Strengthening of immune system Household gardens

Distribution list & registration criteria (assumed) Records & photos

Clothing (school uniforms, blankets & clothes)

Protection Prevention of sickness Improved self esteem & identity

Acceptance of children in the school (assumption concerning blankets)

Shelter Protection, accommodation Feeling of unity & locality

Records of house repairs

Financial (school fees & grants, transport)

Improving the standard of living temporarily Accepting of new clients through referral Education (human development)

With children’s attendance at school & grant slips

Organisational I.Z. Capacity building of staff & community Community awareness & involvement Linkage with other organisations Professionalism Improved service through the team work

CAFOD reflection process, results of I.Z.

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Guiding Pr inciples: Physical needs

Food distribution, clothing and financial support

• Make clear that the response is not permanent; such support is often a limited resource from limited funds

• Require people to take steps to develop their lives so that the programme does not encourage passive dependency. It is possible to inadvertently encourage attitudes of “you owe me” for life, or a victim mentality

• Ensure complete transparency of eligibility criteria and involve the community in their development, or misunderstandings and accusations of unfairness can arise. Inconsistency in food parcels often cannot be helped and can add to perceptions of unfairness

• Despite a project’s best efforts, community perceptions of unfair practices can prevail and the project needs to handle these as openly and transparently as possible

Gardens & income generation projects

• Homestead gardens are preferable to community gardens because of their proximity to the family home (in the context of high HIV prevalence for sick adults and unaccompanied children) & they provide a greater incentive to innovate.

• Community gardens work when a water source is close, relationships are good between members, and there is skill-sharing

• Disadvantages of community gardens include the fact that people don’t see any immediate financial gain to themselves, people may be too sick to go to them or live too far away, and there is often no marketing strategy for selling produce.

• Gardens can place extra responsibilities on parents, able-bodied children or other adult carers who are already struggling to cope with existing responsibilities

• Child headed households need more initial support i.e. the provision of watering, fencing, labour and knowledge etc

• There can be problems in promoting self sufficiency while giving hand outs at the same time; people may not see the need to help themselves while they are receiving welfare

• The attitude of the surrounding community affects the efforts of both homestead and community gardens, for example, some gardens are affected by theft, while in other communities neighbours are inspired to begin their own gardens

Shelter: Rebuild & repair in order to keep family in existing home

• Shared contributions are a good way to minimise costs to the project and for communities to contribute. For example, a project provides the materials, and people provide their own labour (with help from volunteers if needed especially for unaccompanied children or people who are sick). In urban areas there seems to be a greater sense of dependency & family members step back to let the project take responsibility

• Child-only households need close monitoring to ensure that they don’t have their homes taken over by relatives, particularly after it has been repaired.

• A challenge is how to sustain existing shelter, perhaps by negotiating on behalf of tenants for lower rents

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Formal & informal fostering

• It is important that parents identify a caregiver before their death, and take part in succession planning with their children & their wider family

• Encourage families to get all the necessary documents (e.g. ID & death certificates) in order. There is often apathy for registering births as it is not seen as necessary but no documents can mean no fostering. The project can have an advocacy role in raising awareness among communities of the importance of documentation, and within local government to make them more accommodating to children with lack of documents

• Encourage or facilitate parents to write a formal will in terms of inheritance wishes

• Keep all the children together as it can be additionally traumatic for siblings if they are separated

• Fostering can mean that children feel they lose their identity especially if they are displaced from their homestead. In addition there is secondary trauma because they are not only often grieving but they are in a stressful situation where everything is new

• Fostering can mean children’s vulnerability to abuse is increased and the project should build in monitoring of children and carers

Placing children in an orphanage

• Full time orphanage care can provide routine, structure, and a sense of permanence

• Basic needs are met, and in addition a child’s access to counselling & support services can be increased. There may be better access to education

• An orphanage can have greater sensitivity to needs and provide for children with special needs

• Children’s vulnerability to abuse is possibly increased (although there was recognition that children can be equally vulnerable in a foster home or even their own home)

• There is increased risk of children feeling like they have lost their identity & connection to their community & culture

• Children can be stigmatised by other children and adults

• Without a family structure they may rarely get individual emotional support

• Children may be reluctant to return to their original homes for reasons of feelings of insecurity and sometimes because they return to a lower standard of living

• Institutionalisation can lead to an attitude of dependency and young people may be ill-equipped to manage outside the institutional structure

• Displacement can occur when a child reaches 18 and has to leave care and has no alternative home to go to

• A high turnover of volunteers can result in children having many inconsistent adult relationships

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Care & Treatment A broad discussion on home-based care was possible because of the organisations’ wide-ranging experiences. The discussion also focussed on the delivery of anti-retroviral therapy (ART) because of SACBC’s recently

implemented ART programme and the close links between ART delivery and home-based care.

Activity

Outcome

Evidence

Obtain staff/ personnel

Employ three staff Project manager Medical doctor (MD) & clinical nurse (CN)

Training Trained – foundation professional healthcare

MD/CN understand ARV treatment

Drug supply & food supplement

Drugs delivered to site (drugs NOT delivered on time)

Site indicates Received or NOT Received

Improving treatment literacy

Workshop (info) Number of people in workshop

Stats/ data received from sites

Monitoring & adherence

collection of data (CG trained to see if people are taking drugs)

Outcome of positive/ negative data

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Guiding Pr inciples Care and treatment

Home based care

• Basing the care on volunteerism reduces costs but volunteers must not be exploited

• Written guidelines are helpful to volunteers and the people they visit so that people have appropriate expectations of each other. An MOU (memorandum of understanding) with volunteers helps identify and agree roles, responsibilities and commitment

• Ongoing capacity building is required for volunteers and the organisation as the work increases or changes over time.

• Carers/volunteers often lack the necessary equipment and it is important to provide material & other support to volunteers

• Programmes need to include increasing the skills of family members, otherwise there is a risk that family members may abdicate responsibility for their sick family members and expect the carers to do everything

• Reflection & constant learning from experience should be built in to the programme and include the input of volunteers

• Record keeping & monitoring systems must be good and up to date

• There is a risk that volunteers use supplies or food intended for clients for themselves

• Volunteers can stop at any time and can be unreliable

ARV programmes

• Coordinate the delivery of ARVs with existing activities

• Provision of ARVs must be accompanied by increases in provision of voluntary counselling and testing services

• Involve traditional health practitioners (THP) in sensitisation and planning. If the ARV programme workers and THPs work together they can provide complementary rather than conflicting information

• Stigmatisation of people on treatment can increase if communities are not prepared. The community needs preparation & mobilisation prior to roll out. Programmes can assume that the volunteers will do preparatory work in communities but often neglects to provide them with the extra resources or training required

• Contrary to some expectations participants discovered that children are good monitors of their own treatment

• The nutritional requirements of people who are HIV positive need careful consideration as their nutritional needs increase

• Learn from other community-based treatment delivery like DOTS programmes

• Progress can be hindered when government systems are not in place (or lab facilities etc)

• Child headed households are often excluded

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Lack of children’s

participation in programming

Children involved in setting the direction of the work

1. What is the situation now?

Create forums for children’s views to be heard

3. How will you get there?

2. What do you want the situation to be?

5 Learning from experience and making changes as a result of the reflection Reflection Point 5: Learning from your experiences so far What changes will you make?

The reflection was designed to help CAFOD learn more about the issues affecting children and their communities in the context of HIV. Although it was not intended as a formal monitoring or evaluation tool, the reflection offered a useful opportunity to make changes or adjust plans. The workshop participants planned to make changes to improve both their programmatic responses and their organisations’ capacities. Some of these plans resulted from the learning that took place within the organisations during the reflection time, and others as a result of the collective sharing of experiences during the concluding workshop. The full detail is not represented here but illustrative examples are discussed.

Many of the proposed plans reflected a desire for improved working relations, better teamwork, updated facilities, efficiency of service delivery, and an increased meaningful involvement of children in decision making about the responses that affect them.

The participants reflected on what they would like to change by writing down how they saw their situation currently, and also where they would like to be. Then they put forward strategies to reach their goals and asked each other for further suggestions and in some cases saw opportunities for collaboration.

As the programme partners shared their plans with each other, opportunities for collaboration and support emerged. Many of the proposed plans reflected a desire for improved working relations, better teamwork, updated facilities, efficiency of service delivery, and increased meaningful involvement of children in decision making about the responses that affect them. One of Thandanani’s aims was to increase children’s participation in designing and delivering responses (Thandanani’s Now and Future diagram is reproduced below).

Participatory tool: Now and future diagrams

Now and future were used to translate the discussions into practical actions. Firstly key areas of learning were identified and participants described the current situation and what they would like the future situation to be (see Steps 1 & 2 in diagram). An arrow was drawn between the two situations with suggestions of how to reach the future goal.

Thandanani wanted to increase the involvement of children in its activities, by providing responses with children, rather than for children (see figure 11). Strategies suggested moving to a situation of “children helping children” and youth-led projects included providing leadership skills workshops and inclusive consultation with children and young people about what their concerns and expectations are. In addition key volunteers could act as community liaison persons to specifically engage young people, and local councillors could be invited to get involved to endorse the initiative and listen to the young people. Another issue for Thandanani was the recognition of a tension within itself between development and welfare approaches. The organisation wanted to make a clearer distinction between its services and set timeframes for individuals to progress from receiving a welfare response to a development response.

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Figure 11: Thandanani's current concern and future plans in “bubbles” and strategies identified

to increase peer support and youth-led work

SACBC focussed on practical changes that could have immediate impact like increasing the capacity of caregivers through general and specialised training. Facilitating access to child support and care grants by building relationships with authorities was suggested as a strategy to assist in getting the necessary identification requirements for eligible families. Building relationships with schools and education and community networks could provide all children with education and the resources that schools need.

Umnini Sinethemba focussed on ways to improve administrative procedures like record keeping and address a lack of physical facilities. Record keeping could be improved through training in recording visits, minute-taking and other administration areas such as financial book keeping, and setting up systems. It would also be helpful to secure funding specifically to meet stationary and record keeping needs. To transform poor inter-relationships into a satisfactory working environment, Umnini suggested setting up control systems for better accountability and team building activities. Seeking donations of office equipment and finding donors to fund running costs so that Umnini can work from an adequately equipped office could resolve the lack of physical organisational infrastructure.

Izandla Zothando planned to go from a situation of limited teamwork to one of highly productive teamwork and co-ordinated planning (figure 12). It proposed to achieve this through regular meetings, rotation of co-ordination, supporting each other, reflecting on teamwork, and learning to accept constructive criticism from each other. A second goal was to develop clear written policies on children’s care and food distribution by agreeing procedures and ensuring consistency. In addition Izandla Zothando planned to implement more systematic regular monitoring and design monitoring guidelines.

Sinosizo was keen to introduce more participatory decision making processes within the organisation, improve the status of volunteers, and increase the involvement of children in project planning and priority-setting.

It was acknowledged that some of the changes that organisations would like to see take place may take time to achieve. There is the added pressure of business as usual – opportunities to reflect are hard to come by because of the workload of individuals. Having taken the opportunity to reflect, it can be hard to return to the working environment find the time to plan ahead and implement changes.

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Figure 12: Izandla Zothando's strategies for change illustrated on a Now and Future diagram

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Part II I Methodologies

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Methodologies

The stages of the consultation and reflection

Methodologies for the reflection process varied greatly across the programmes. They ranged from collaborative and intensive residential programmes with students, to extensive questionnaires to collect data from a large number of projects and individuals, to literature reviews and participatory sessions. This section briefly describes the methodologies used and highlights the advantages and challenges of the different approaches. The methodologies are summarised under three themes:

• Field-based collaboration between development academics & practitioners

• Extensive survey by questionnaire • Internal discussions and existing

processes

Participatory tool: r iver and road maps To visually represent the methodologies a road or river was drawn to show the reflection process from our first consultative meeting to the concluding workshop. Contributions, challenges and key moments or events were mapped.

Field-based collaboration between development academics and practitioners In an innovative collaboration The Valley Trust brought together development academics and practitioners by facilitating co-operation between students at the University of Natal and two programmes: Izandla Zothando and Umnini Sinethemba. The work with two groups of students began with initial preparation before two-week visits to the programmes. Both groups used the Action Learning Model, consisting of reflection, followed by evaluations of the exploration, and then planning the next stage in light of the evaluation. A variety of participatory tools were used to explore the responses. Follow up visits to the programmes were opportunities for discussions about the reports and validation of their contents. Bringing together the university students and the project workers required co-ordination and

preparation for the various stages of the project. However, as with most well-planned participatory processes, the rewards and outcomes were considered to have outweighed the additional time and labour required to realise them. For both the organization and the students the field trip exercise was an incredible learning experience. We grew not only as students but also as individuals. The knowledge we gained will be carried through the rest of our lives. In our entire university career we have not learnt as much and gain the practical experience as in the four days spent with the organization. We are extremely grateful that our reflection exercise did impact positively on the organization, which is now well on it’s way to helping the community with improved strength and vigour.

Umnini Sinethemba

In it d South Afr ican Partner Programmes

ia l meet ing between CAFOD anStep 1: Consultation. 1 Day

Step 2: Discernment by Programmes 2 Months Partner Programmes cons idered theimp l icat ions of the ref ect ion and dec ided whether to part ic ipate

l

Step 3: Shaping the reflection. 1 month

Step 4: Work by each programme 6 months

CAFOD and part ic ipat ing programmes shaped the content and processes of the ref lect ions

Consu ltat ion and ref lect ion per iod

Step 7: Sharing and Learning. 3 days

Three day workshop to conso l idateand share the ref lect ions

Reflection timeline

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Experiences Shared Field-based collaboration between development academics and practitioners

• The action-learning cycle is a simple & powerful tool to learn about what you hear and to reflect internally

• Collaborating with people external to the programme to participate in the reflection meant there was more objectivity in the approach and interpretation

• A team approach was necessary when bringing together people from different organisations and institutions

• The diversity of participants meant that individuals strengths & gifts could be recognised and drawn on

• Mixed backgrounds of both the staff and students made for good debate and challenging discussions on development. There was a certain amount of prior learning (theory and assumptions) by students that had to be “undone”

• The site visit engaged the students who had not previously had experience of the issues affecting people in rural areas

• Role play was particularly useful as staff could make jokes and raise issues about themselves in a humorous way

• Programme staff & volunteers learned about their own work and improved their team work. The projects were also able to identify gaps and put in mechanisms to address these

• Staff initially felt they were being evaluated and careful negotiation was needed to alleviate concerns. To overcome any feelings of mistrust students & programme staff & volunteers worked together to build trust over the period of time and so the students became accepted

• The tools were interactive and different tools were used to triangulate information. For example, the field work revealed inconsistencies and triangulation was essential for validating the evidence

• The different languages required interpreters. Fortunately there was a Zulu speaker in the student group who was able to facilitate some of the work

• Mutual expertise & practice was exchanged between development practitioners for both students & staff and led to valuable collaborative problem solving in situ

• A positive outcome was an increased level of trust between the university and the Valley Trust whose relationship was improved through building on practice rather than talk

• The collaboration between different organisations was intensive and subject to time constraints

• The experience stressed the need to ensure that the objectives of any participatory tools are clear and appropriate to the groups they are used with. Without clear purpose the tools could end up as a game without useful results.

• The proposal to work together required negotiation with students & the programme’s staff & volunteers to convince them of the its value to both groups

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Extensive survey by questionnaires Questionnaires were used by a number of organisations. In particular SACBC used questionnaires to collect comparable data from a large sample of 29 organisations. The respondents included project workers, caregivers and children. The questionnaires

were tested by SACBC staff and an independent consultant in a pilot study. The evaluation of the pilot resulted in four field guides being developed and the appointment of research consultant to lead the interview process.

Experiences Shared Extensive survey by questionnaires

• Project co-ordinators were able to provide historical background & knowledge of the programmes

• Caregivers answered the questions easily and their wealth of knowledge was discovered. The children were also recognised through the survey as excellent sources of information and knowledge

• The 45 questions were time consuming and sometimes difficult for respondents to grasp the context they were referring to. However the information desired could be gained if enough time was spent collecting it

• Gender was taken into account especially during the focus on teenagers

• Staff carried out the evaluation of the pilot questionnaire with the input of project co-ordinators; they extracted what worked well & included some of the things that SACBC wanted to know. Questions were adapted as appropriate and made more user friendly for both the interviewers and interviewees

• Questions were made more qualitative & open-ended and different methodology was used with different groups (the questions were supplemented with participatory exercises for children). This revealed a wider situation analysis & gaps in programmes which affected future plans

• Diversity of languages required interpreters

• The reflection recognised the bias, or possible misconceptions, of both the interviewer & the organisation they represented. Care had to be taken in explaining the purpose of the questionnaire so as not to create false expectations of funding

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Internal discussions and using existing processes Reflection within the organisation among colleagues happened at some point for most programmes. Sinosizo used existing organisational records and documentation to reflect on its responses to children. Then using the questions suggested by CAFOD as a backdrop, information was collected from staff discussions and observations of children’s groups. Reviewing documentation published about the organisation provided valuable contextual information. Thandanani used this approach recognising that existing material provided a good starting point only (Figure 13). There is

much to be gained from discussions and conversations with children and volunteers as well as from external and international visitors. Discussions with government councillors and teachers were also beneficial although it is possible that their own agendas were recognisable in their responses. Thandanani used an organisational strategic review to raise questions and discussions relevant to the reflection. Conversations with a wide range of contacts in hospitals, clinics and wider networks gave rise to many more issues than the organisation had originally focussed on.

Initial Conference

Final Workshop

Figure 13: Thandanani's timeline is a river depicting the how and when participants contributed, and situating the two key internal processes (strategic review and strategic plan) as bridges.

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Experiences Shared Internal discussions and existing processes

• The internal information records were used as a starting point & highlighted poor record keeping. There were a lot of records which consequently took a long time to survey

• Staff identified gaps in & misconceptions about the programme as well as training & education needs

• Children’s groups identified needs and led to changes & improvements

• The original questions from CAFOD were adapted flexibly and as appropriate

• The discussion should not be held with a narrow focus group. It is particularly important to include children and their immediate caregivers and as wide a cross section of the community as possible

• Observations had to be planned carefully so that the observer attended appropriate group discussions

• Reviewing documents (including some independent reports about the programme’s work) provided the historical context of organisational changes in focus. Documentation is a good starting point only and does not substitute for hearing from the programme participants and communities

• A different environment was needed to get response from volunteers, one that included them

• A forum was created for children to raise issues and meetings were held at the organisation’s office rather than in homes or schools so were less invasive. Small school groups were easier and less time consuming to work with than individuals

• Questions were suggested to raise the key points with the staff which were followed by debate. This coincided at a strategic point of change in the organisation (i.e. a new director was coming into post)

• In focus groups of child headed households and adult headed households, gaps in support were identified through tools like using life maps. Wider issues (than only school fees) were revealed like the lack of behavioural & psychosocial support in schools

• Speaking to wider community stakeholders like councillors was a welcome opportunity to raise important issues with them, although they brought their own agendas with them

• Groups in the community exchanged & shared their thoughts frankly and with autonomy from the organisation because the sessions were facilitated by volunteers

• The review provided an opportunity to reflect on work already done and to identify gaps

• The context was difficult to explain to external visitors who were asked to contribute and translation almost required for them to understand the organisational and contextual language

• Volunteers that could not attend the consultations conscientiously sent people in their place but who were not able to contribute to the reflection because they lacked experience. A clearer message about the purpose of the meeting could have limited this.

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Part IV Conclusions

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Conclusions Key issues: This report does not capture all the issues related to responding to children affected by HIV and AIDS. Gender and stigma were two issues that came up throughout the discussions but focussed discussions were not held on those themes. From the reflections and discussions the following issues were returned to repeatedly.

The participation of children Children are capable of playing a pivotal role in shaping the decisions that affect them and are valuable and essential sources of knowledge about the issues that affect them. However it is sometimes harder for adults to accept this. It is sometimes easier and much quicker to accept information about the issues affecting children from the adults who are close to them rather than the children themselves. The continuum of children’s participation shows how careful organisations must be in their involvement of children in the programmes to make sure they are genuinely participative and meaningful.

Welfare and development approaches How programmes are perceived by the communities they work in is greatly affected

by how the community is involved in it and influences the effectiveness of the programme. Organisations found that they must engage with the community and share common concerns. A programme must be clear about its aims and limitation and this was most apparent where programmes felt a tension between providing welfare responses and initiating development approaches. Expectations of the programme can quickly be entrenched by community members who may become reliant on the programme or resistant to self-help.

Institutional care and community based care The question of the appropriateness of institutional and community-based care was addressed in the discussion about the provision of basic services, in particular shelter. The participants concluded that the answer is not a case of either/or. Both institutional and community-based care approaches have a place in a comprehensive multi-sector response because of their different strengths and purposes. Programme partners favoured community based care approaches over long term institutional care but could see the possible need for smaller scale establishments that provided specific medical or psychosocial care, for short periods of time if possible, to avoid institutionalisation.

The process for CAFOD Following the work of this consultation and in response to the starting questions for this work the following is recommended:

Programme funding implications 1) CAFOD continues to adhere to the policy of

not supporting long-term institutional care for children affected by HIV and AIDS.

2) CAFOD recognises that in specific

circumstances institutional care can have a role and therefore proposals from community based programmes that include an option around short term or emergency institutional care should be considered seriously, and not rejected outright (notwithstanding existing funding constraints, for example, the purchase or construction of buildings). Recognise that where institutional care is proposed as a

respite or short-term emergency option, it can have a role within a wider programme. In these circumstances we recommend that such proposals should be considered seriously.

Learning from and with partner programmes 3) Initiate further opportunities for reflection

processes to maximise learning and exchange between programme partners that also inform CAFOD’s learning and development. There is enormous value of

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an open-ended reflection process that was not linked to funding or reporting requirements. The reflections provided much more than an answer to a single question and instead provided an enriching experience for all participants, partners and CAFOD alike, plus it documented the programmes’ experiences for others to benefit from.

These processes are by their nature time consuming, slower, and require a different

approach to decision making. For these reasons they may be dismissed by some as unworkable. The findings of this consultation once again prove the opposite. The outcomes far exceed initial expectations of a straight answer to a simple question. CAFOD encourages partner organisations to work in a consultative participatory manner with communities they serve. It is important to that CAFOD be seen to apply these principles to its own practices.

Next steps This report brings us a certain distance and there is more work to take forward.

Build on strengths The starting point of this research was to establish concerns and needs in order to identify responses. A potentially more constructive starting point would be to focus on the strengths rather than the needs of communities. Families and communities are coping in challenging situations and further research could examine their existing coping mechanisms, and see how CAFOD and its partners can support them to build on their strengths.

Map responses more broadly Mapping or exploring the experiences of partners in other regions could contribute to the further development of the guiding principles. There are a range of issues that, although sometimes implicit in the experiences of the partners who took part in this reflection, merit further exploration:

Ethical dimensions of working with children and young adults Linked to child protection policies are the ethical dimensions of working with children. Adults can abuse their power and authority deliberately or unknowingly.

Nutrition and its role in treatment and well-being Although implicit in the partners’ discussions about community gardens, the role of nutrition in HIV prevention and treatment warrants further exploration.

Child protection policies Many partners are already experienced in child protection issues and CAFOD can facilitate the finding and sharing of expertise and good practice among partners.

Street children and working children The responses to children that were examined in this study were focussed on children in their communities in peri-urban or rural environments. In urban areas there are families who are homeless, and many children living on the streets without adults. What flexible responses are required when neither community nor institutional care meets the needs of some children?

Developing a rights-based approach to working with children Almost every country has ratified the UN Convention on the Rights of the Child. This and a country’s own national legislation allows for a rights-based approach to children to be developed.

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The Process for Programme Partners The final word is from the partners who identified the following as key values of having been involved in this consultation:

Learning from each other – the opportunity to reflect openly and share

The process offered the possibility to listen to communities

Being consulted in a truly consultative process

A sense of duty to report back to communities including the children and young adults that participated.

The comments below were from the workshop participants in their feedback about their experience of both their reflection and the workshop.

“The reflection process encouraged organisational teamwork and created a forum for expressing opinions.

”

“The workshop helped us a lot because everything we learned came from our experiences – we are the ones that contributed and participated in the workshop rather than being talked at by a

facilitator or trainer.”

“The workshop brought out some good tools that can be usedin other contexts.”

“The different levels/stages of the various organisations weregood for exchange of experiences and ideas.”

“The experience has been profound and meaningful in that already since June many ‘better ways’ that have emerged havebeen implemented. This is highly motivating and affirming.”

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“I appreciate [CAFOD’s] willingness to explore with partners issues that they have in common.”

“I have HUGELY enjoyed and appreciated the emphasis of this sharing and learning rather than activities; we need more of this type of synthesis in developmental type work.”

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