P S Y C H O S O C I A L W E L L B E I N G S E R I E S

Mainstreaming Psychosocial
Care and Support into Home-
Based Care Programmes
For practitioners working with children and families affected by HIV and AIDS

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 REPSSI is a regional non-governmental organisation working with partners to promote psychosocial care and support (PSS)
for children affected by HIV and AIDS, poverty and conflict in East and Southern Africa.

The REPSSI Psychosocial Wellbeing Series

Through this series, REPSSI strives to publish high-quality, user-friendly, evidence-based manuals and guidelines, all characterised by
subject matter that can be said to address the issue of psychosocial wellbeing. Within the series, different publications are aimed at
different levels of audience or user. This audience includes: 1) community workers, 2) a variety of social actors whose work is not
explicitly psychosocial in nature, but in which it is felt to be crucial to raise awareness around psychosocial issues, 3) caregivers,
parents, youth and children, 4) specialised psychosocial and mental health practitioners. Apart from formal impact assessments,
towards further developing the evidence base for our tools and approaches, we welcome user feedback around our materials.
The standardised feedback form and a full list of all the titles in the series can be downloaded from www.resspi.org

Jonathan Morgan
Editor, REPSSI Psychosocial Wellbeing Series

Email: knowledge@repssi.org Website: www.repssi.org Telephone: +27 11 998

2 5820 Postal address: PO Box 1669, Randburg, 2125, Johannesburg, South Africa
Contents
Foreword 1 4 Psychosocial support and the family 12 7 Advocacy and networking 33
Respect and dignity 12 What do we mean by advocacy and networking? 33
1 Introduction 3 Listening 13 Networking and advocacy of psychosocial support
What can I expect to find in these guidelines? 3 Disclosure 15 in home-based care work 33
Key messages in this guide 4 The psychosocial aspects of long illness 16 What types of advocacy can we be involved in? 34
The story and people behind this publication 5 Talking about death and dying 16 Specialist referrals 35
Who are these guidelines for? 5 Succession planning 17 Networks 36

2 Understanding psychosocial 5 Psychosocial support and the child 18 8 Getting started with mainstreaming
support mainstreaming 6 What makes children vulnerable? 18 psychosocial support in your organisation 37
What is home-based care (HBC)? 6 Resilience 20 Step 1: Discussing psychosocial support in
Psychosocial care and support (PSS) 6 Consistency 21 your organisation 37
Mainstreaming 7 Helping children to cope with loss 22 Step 2: Develop a PSS mainstreaming plan
Talking to children about their own illness 23 for your organisation 38
3 The value of addressing psychosocial Caregivers supporting children 24 Step 3: Developing your skills in psychosocial
needs in home-based care 8 Child participation 24 support 38
What types of psychosocial issues come up in Ethical Considerations when working with children 26 Step 4: Introducing psychosocial support
home-based care work? 8 materials and tools 40
Identifying psychosocial issues in your work 9 6 Psychosocial support and the community 27 Step 5: Caring for the carers 44
How a focus on psychosocial support can help 9 Caring communities 27 Step 6: Tracking your progress 45
Supporting older caregivers such as grandparents 28
Changing stigma towards people affected by 9 Conclusion 48
HIV and AIDS 29
Access to treatment 32 10 Appendices 49
The psychosocial aspects of taking treatment 32 Appendix 1: Definitions of PSS in different languages

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4
Foreword
REPSSI is a regional non-governmental organisation working their caregivers. Working with existing HBC programmes to
with partners to promote psychosocial support (PSS) and increase the focus on the psychosocial wellbeing of children
care for children affected by HIV and AIDS, poverty and may be a powerful way of strengthening the capacity of
conflict in East and Southern Africa. caregivers and communities to develop caring and nurturing
environments where, despite living in difficult circumstances,
REPSSI advocates that services, programmes and policies children may reach their full potential.
designed to support vulnerable communities need to respond
holistically to the needs and rights of communities and
children. It is important that psychosocial care and support
programmes are not only specialised stand-alone programmes.
Noreen Masiiwa Huni
Instead, REPSSI advocates for the social and emotional Executive Director,
needs of children and their caregivers to be addressed in REPSSI, June, 2009
an integrated manner. This can be done by mainstreaming
psychosocial care and support into all types of programmes
designed to support vulnerable communities, including home-
based care (HBC) programmes.

HBC programmes focus on supporting vulnerable families

living with HIV and AIDS within their home environment.
This means that HBC programmes are often ideally suited “The REPSSI vision is that all children affected by HIV and AIDS, conflict and
to addressing the holistic needs of vulnerable children and poverty benefit from stable, affectionate care and support.”

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Foreword
The International Federation of Red Cross and Red Crescent
Societies and the southern African National Red Cross
Societies have been partnering with REPSSI on psychosocial
support for children for many years. Red Cross Societies in
this region have been implementing integrated HIV and AIDS
programmes since 2001, with community home-based care
(CHBC) being the entry point and cornerstone of these
programmes. It is through CHBC that support to vulnerable
children and their parents or guardians is provided.
Community home-based care goes beyond the provision of
nursing care. For it to be effective, it must involve psychological
and social support for clients and for their families. Our
volunteers provide a shoulder to cry on, a listening ear and
become the trusted friend to adults and children alike.
It is therefore with great pleasure that we have collaborated
with REPSSI on this important document. We believe these
guidelines will be invaluable to Red Cross Societies and
other organisations throughout the region in ensuring that
psychosocial support is provided to community home-based
care clients and to children, as well as to the volunteers who
carry out this vital work.
Françoise Le Goff
International Federation of Red Cross and Red
Crescent Societies
Head, Southern Africa Zone
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 1 Introduction
In sub-Saharan Africa, 47 million children have lost one or
both parents. At least 11,600,000 of those have lost one or
both parents to AIDS (Children and AIDS, Third stocktaking
report 2008, UNICEF/ UNAIDS/ WHO/ UNFPA). Millions more
have been made vulnerable by the disease and many are
primary caregivers for sick parents or they have to drop out
of school and become family breadwinners. Their parents
are often supported in the community through community
home-based care (HBC) programmes which look at the
needs not only of the parents, but also the children.

HBC is not merely provision of nursing care, hygiene and

nutrition. It also encompasses the caring approach of the
caregiver (both HBC volunteer and family caregiver),
psychological and social support, and in recent years in some
countries, access to treatment. Psychosocial support (PSS) is
vital for all household members – clients, children, parents,
caregivers as well as HBC volunteers.

What can I expect to find in these

guidelines?
The purpose of these supplementary guidelines is to help
you fulfill the vision of a home-based care programme
that has mainstreamed psychosocial support (PSS) into its

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various activities. We cannot look at mainstreaming PSS
into home- based care programmes without looking at the
situation of the clients/parents, as well as that of the children
and the HBC volunteers. Therefore an HBC volunteer who
has mainstreamed PSS into his or her work pays particular
attention to PSS needs, both of the client, the children and
themselves. On page 12 we have sketched what such a vision
might look like.
This guide is a supplement to an existing manual entitled,
Weaving Hope for Our Children, HBC as an entry point for
enhancing PSS care and support for children affected by HIV and
AIDS, REPSSI, 2007.
These supplementary guidelines add to Weaving Hope in the
following ways:
• By addressing the changing HBC landscape brought about
by the increased access to ART which means that many
HBC clients no longer require nursing care within the
home
• Weaving Hope provides ideas around how PSS can
be included into HBC activities, focusing mainly on
children, while this document goes beyond integration
into a mainstreaming approach in which the HBC
organisation inter. alia, considers its own policies, staff
care, networking, etc
The structure of these guidelines is as follows. We define home-
based care, psychosocial support and mainstreaming and present
a rich description / hypothetical case study of what “mainstreaming
PSS into HBC” looks like, and then we refer you to relevant tools
and resources that might help you realise this vision.
If you would like to assess the extent to which you currently
use PSS principles in your HBC programme, REPSSI has a
short assessment tool you can use. In this guide we have also
provided some examples that might be helpful
Key messages in this guide
The main points that we hope you will take away from this
guide are that:
• Home-based care (HBC) programmes are well placed
to recognise the emotional and social needs of children in
families affected by illness
• Mainstreaming of PSS ensures that orphans and other
vulnerable children in HBC settings access basic services
that improve their lives.
• A national approach to home-based care dealing with the
impact of HIV and AIDS requires psychosocial support for
children as an integral component of the response.
• During HBC, through showing respect and care for
families receiving home-based care, we build their dignity
• As we build a caring relationship with the family, we
are able to help children in the family to cope with what
is happening
• We can do this by strengthening the relationship between
children and their caregivers
• We can also do this by helping the caregivers to deal with
practical matters, like making wills, applying for social
grants, and planning for the care of the child when they
pass away
• We can make space to talk with children and caregivers
about sensitive things like death
• We can link children with other caring adults and children
• We can focus on the good things that children and
caregivers are already doing to improve their situation,
and in doing so, build their self-esteem
• Finally, making space for these important aspects opens
us up to the value of human beings, children and
relationships which adds meaning to our lives and
contributes towards a better life for others, even under
difficult circumstances.

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The story and people behind this The partners involved in the consultative meeting on Who are these guidelines for?
publication Weaving Hope were: The guidelines are intended for anyone working in HBC
These guidelines were written by REPSSI in collaboration • Hospice Association of Zimbabwe (HOSPAZ) settings, including:
with the International Federation of Red Cross and Red • Batsirai Group • Community HBC workers and volunteers
Crescent Societies, in consultation with Hospice Association • Mashambazhou Care Trust • HBC project staff
of Zimbabwe and its affiliates. A consultative workshop was • Souls Comfort • Those working with orphans and vulnerable children
held on how home-based care practitioners felt psychosocial • Silundika AIDS Health Council • HIV and AIDS Project Managers and staff
support could best be mainstreamed into their programmes. • Batanai Support Group • Donor organizations supporting HBC
It explored relevant definitions of psychosocial support, • Bethany Project
drawing on existing home-based care initiatives that enhance • Dananai Child Care (DACHICARE)
psychosocial support. The guidelines make use of case
studies, background information and practical suggestions for Peer review team:
mainstreaming psychosocial support (PSS) into home-based Alex Tigere – REPSSI
care programmes. Addis Hlomani – Hospice Association of Zimbabwe
Simbarashe Mahaso – Batanai
These are some of the people that were actively involved in Alice Ndlovu - Bethany
developing the guidelines: Gladys . Gahadzikwa – DACHICARE
Contributing writer: Jennifer Inger, the southern African Elizabeth Gwate - Souls Comfort
Regional OVC Advisor from the International Federation of Musa Sibindi – Matebeleland AIDS Council
Red Cross and Red Crescent Societies Ivy Ndlovu Simbanda – Silundika AIDS Health Council
Contributing writer: Bonginkosi Sibanda Mashaya Dennis Simbarashe – Midlands AIDS Service
Project Liaison: Brighton Gwezera from REPSSI Organisation
Pretesting: Midlands AIDS Service Organisation and
Sibambeni AIDS Care
Editing: Berenice Meintjes from Sinani
Series Editor: Jonathan Morgan from REPSSI
Design and Layout: Candice Turvey from Spiritlevel
Illustrations: Helga Megan Hoveka

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 2 Understanding psychosocial support mainstreaming
What is home-based care (HBC)?
Home-based care can be defined as the care and support that
people living with HIV and AIDS and other chronic illnesses
receive in their homes, through their families and communities.
This care addresses medical, nursing, emotional, spiritual,
psychological, social and material needs of people living with
HIV and AIDS and their families.
The main objective of HBC is to improve the quality of life
and survival of people living with HIV (PLHIV) and to maintain
their dignity. It also aims to contribute to the reduction of
stigma and discrimination and the further spread of the virus
and so reduce the impact of HIV and AIDS on individuals,
families and communities.
Community home-based care also promotes community
participation and involvement while at the same time
empowering family and community members. PLHIV can
be cared for in the familiar environment of their homes with
their families around them. The presence of relatives and
community members during difficult times or final moments
may help to reduce stress and depression. (Community home
based care for people living with HIV and AIDS, IFRC 2003)
The World Health Organisation (WHO) defines home-
based care as “any form of care given to sick people within
their homes and includes physical, psychosocial, palliative and
spiritual interventions”.
Thus we can see that psychosocial support is a vital
component of home-based care.
Psychosocial care and support (PSS)
What is psychosocial wellbeing?
Psychosocial wellbeing is about the connections between the
person their family, community and society (“social”). It is also
about how each person, feels and thinks about him- or her-self
and about life (“psycho”).
Such wellbeing includes many different aspects of our lives,
including physical and material aspects, psychological, social,
cultural and spiritual aspects. The focus of psychosocial
wellbeing is not just on the individual, but on households,
families and communities.
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What is psychosocial support?
As an individual or organisation interested in PSS, it is helpful
to develop a working understanding of PSS. You may wish to
discuss and add to these working definitions provided below.
Think about which of the statements in the box below hold
most value or relevance in the work that you do. It is not
necessary to choose one. You may find that several of the
statements are useful.
PSS is about helping children, families and communities
to improve their psychosocial wellbeing. It is about
encouraging better connections between people, and
building an enhanced sense of self and community.
PSS is expressed through caring and respectful
relationships that communicate understanding, tolerance
and acceptance. It is about promoting everyday consistent
care and support in the family and community.
PSS can mean speaking with kindness, and listening with
care to what children and their caregivers have to say.
Most importantly providing PSS means that children and
communities are treated with dignity and respect, and
acknowledged as agents of their own decisions and future.
Activity 1:
Develop your own working
definition of PSS
In your organisation present the definitions of
psychosocial support as just described. In groups
draw a picture of two young children who are typical
participants in your HBC programme. The first child
you draw has many unmet psychosocial needs and the
second child you draw has good psychosocial wellbeing.
Discuss these and come up with your own working
definition of what psychosocial support means in your
work setting.
Try out a definition for PSS in another language!
Appendix 1 shows definitions of psychosocial support in 9
different South African languages.
Mainstreaming
What is psychosocial support mainstreaming?
Mainstreaming touches on all aspects of how a project
operates. Many people talk about mainstreaming as having
a special “lens” such as a PSS lens or a gender lens through
which to examine the impact and method of your work.
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Through such a lens, you then consider how to incorporate or
grow aspects of PSS or gender into your programme.
REPSSI describe PSS mainstreaming as being about looking
at all aspects of programming, policy development and
organisational development and always keeping in mind
children’s and caregivers’ psychosocial wellbeing. It involves
incorporating PSS elements into:
• Policies and procedures
• Programme design and activities
• Planning and budgeting
• Capacity building and human resource development
• Monitoring and evaluation
• Networking with government sectors and institutions
It is important to make mainstreaming a manageable process.
Otherwise mainstreaming can feel overwhelming. This is
because once one aspect of a programme changes, this then
has implications for others. For example if policies change,
then procedures may need revision, staff may need different
training, additional resources may need to be found, etc.
Film reference!
The film “Everyone’s Child” provides helpful ideas for
further discussion.
3 The value of addressing psychosocial needs
in home-based care
What types of psychosocial issues come
up in home based care work?
Many experienced home-based care workers become
interested in learning more about psychosocial care and
support. They find that during their health care work with
families affected by HIV and AIDS, a lot of other issues often
come up that were not covered in their initial HBC training.
Here are some examples of the types of psychosocial issues
that home-based care workers often say that they encounter:
• Families may struggle to talk about death and dying, even
though there are things that need to be organised and
spoken about before it becomes too late. Many of our
cultures have good practices for helping people after
death, but for most of us it is difficult to find appropriate
ways to talk about dying while someone is living.
• There may be stigma and denial in the family and
community, which affects people’s ability to deal with
what is happening to them, and also makes people feel
as if their dignity is being threatened. Dignity is a crucial
consideration for people who are chronically ill.
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• There may be children in the home who are looking after
sick parents and siblings. This puts a strain on the children,
who may miss school, time for homework, time with
friends and time for play.
• Very often people do not know how to talk to children
about family members who are sick.
• Children with sick parents, or parents who have passed
away, may be teased and called names at school. This can
affect their confidence and sometimes they stop attending
school because of feeling different to the other children.
• Very often people are unsure about whether or not to
test children in the family for HIV, and if they are HIV
positive, how to talk to them about their illness and
treatment.
• Sometimes there are divisions or misunderstandings in
the extended family which means that people don’t have
important documents like birth certificates with which to
apply for grants.
• Sometimes older caregivers like grandmothers have
already suffered many losses in their family. They may be
struggling with looking after many children, and feeling
overworked, angry, and sad about the loss of their own
children.
• Sometimes the male partners of women who are sick do
not know how to provide appropriate support and get
pushed aside by other women in the family. Sometimes they
spend more time away from home and can even turn to
drink to help them cope with what is happening at home.
• Sometimes women who are HIV positive are accused
by their husbands of being promiscuous. They may even be
beaten or verbally abused.
• Sometimes families who are sick take more alcohol as a way
of coping, and this can affect their treatment. It can also
have a negative impact on children in the family.
• Families affected by poverty can struggle to come up with
a well-balanced diet to support those who are sick. This
creates a lot of extra stress.
These are all sensitive and difficult issues to talk about. Knowing
more about psychosocial support can help one find respectful
ways of talking about such matters with families.
Identifying the psychosocial issues in
your work Activity 2:
These are just some of the examples of the psychosocial What are the PSS issues coming
issues that we have heard about from other home-based care out of your HBC work?
workers. Try using the following exercise to come up with your
own examples. Think about some of the families that you support with
home-based care:
What are the social issues that they are struggling with
(eg problems between family members, unspoken issues
about their illness, the way they are treated by their
extended family and neighbours)?
How/what have you noticed if the illness in the family is
affecting the children?
How a focus on psychosocial support
can help
Knowing more about psychosocial support can improve
the quality of the home-based care service that you offer.
This is often about listening to the underlying issues and
finding respectful ways to assist people in a way that maintains
their dignity.
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 Case example:
Living positively
(The names and identifying details have been changed
to protect the identity of the people in this true story).
Hansina is a 36 year old woman from a remote village in
the north of Namibia who is living with HIV. She is married
to Joseph who is also HIV positive and they have five
children ranging in ages from 1 to 18 years.
Hansina was devastated to find out that she was HIV
positive when she had her son in 2004 and was very
upset when she found out that her son Johan was also
HIV positive. He is now 5 years old and has been on ART
since he turned two. Hansina says “I was overwhelmed
with the fear of not knowing how long I still had to live or
even if my child would survive. I was constantly worried
about who would take care of the children who were all
very young at the time. To make matters worse, when
I tried to persuade my husband to go for testing, he was
adamant that he was well and therefore did not need any
tests.” She went on to describe how Joseph’s behaviour
during this period became reckless as he lived in a state
of constant drunkenness and he no longer tried to hide
his extra-marital relationships from her. Joseph eventually
agreed to be tested in 2007 when he started feeling weak
and was coughing continuously. He has been on ARVs since
that time.
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It was during this period that Hansina approached a Red
Cross volunteer Thomas, who lived in the neighbouring
village, for support. She had no one else to turn to as her
own mother did not show any understanding of her difficult
situation although her mother was receiving a pension of
USD 45. Hansina’s only sister, who lived in another village,
was too far away to provide the support that she needed
on a regular basis. She also had her own family to care for.
Although the volunteer was male, Hansina felt that Thomas
understood her plight and was willing to give of his time
and own meagre resources to help alleviate her suffering. “I
felt very depressed and the acute shortage of food did not
help this either”, she told us. Thomas would visit her three
times a week if only to sit down and listen to her problems.
She added “after talking to him during his visits, I felt that
we did not just have to wait for death to come but that the
three of us could live long if we practised positive living. We
discussed treatment, nutrition and adherence. I did not feel
shy even to ask him questions about condom use! I began
to accept my situation and even though I had lost a lot of
weight, I knew that things were going to get better”.
Young Johan takes his treatment without complaint
although recently he has started asking her why he has to
take tablets every day. Hansina’s youngest child who is one
year old, so far has tested HIV negative as she undertook
PMTCT.
Once Hansina started on ART, she felt much better but her advice , she discusses such concerns with Thomas who
the lack of food posed another challenge - “The medication also tries to persuade Joseph that he should abstain from
made me feel very hungry and weak and when I wanted to drinking and smoking. She smiles and says “once I share my
stop, Thomas would remind me that defaulting would make burdens with my volunteer, I feel like a huge load is lifted off
me very sick and he would bring traditional vegetables to my shoulders even if all he does is to just listen. I know I can
help me with adherence”. Thomas’ mother who is the local trust him with confidential issues”.
headwoman is also living with HIV. She has disclosed her
status to her son and her community and Hansina testifies Whereas before, she was afraid to discuss her status with her
that Thomas provides her with a lot of practical advice that older children, she states that she now feels free to discuss
he hears from his mother. this with them and she is getting close to the point of helping
other people by disclosing her status without fear of being
She has to walk all day to the hospital to collect her stigmatised. She is planning to inform the younger children
treatment but now that she knows the importance of soon and to ensure that Johan understands more about why
taking her medication regularly, she finds it is not an he is having to take medication before he starts school. She
impossible task. Although she is often stressed by her has been in discussions with Thomas about starting a support
husband who continues to drink and smoke a lot against group and has offered her home for the meetings.
We can see from this case study that the role of community
home-based care volunteers in relation to HIV and AIDS is
changing. Many bed-ridden home-based care clients who
would previously have needed bathing and feeding and
care in the home, are now strong and back at work due to
the availability of ART. Therefore the volunteer’s role has
now changed to that of ART literacy and nutrition advisor,
adherence supporter and provider of psychosocial support.
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As can be seen from this case study, psychosocial support can
be very effective even without formal counselling or training.
• This psychosocial support includes providing simple
support and encouragement around challenges the client
may face in daily life.
• The client’s psychological wellbeing can be improved
through practical support e.g. adherence and nutrition
advice
• While there was no formal counselling, the HBC volunteer,
mainstreamed PSS into HBC and in this case the client felt
sufficiently supported and free to discuss many issues with
her volunteer.
• The volunteer even had his clients’ needs in mind when he
moved to a new plot recently and chose one where he
hopes to grow food for the clients and their children.
• The fact that the mother of the volunteer has disclosed
her status to the community has encouraged them, and
both the volunteer and the client are now keen to help
other people and start a support group. Stigma is a great
source of stress and this kind of breaking down of stigma
and community awareness creates a more open and
supportive environment.
• We must not forget that the volunteers themselves need
psychological support. Thomas says it is a source of stress
that he cannot help the clients as much as he wants to,
especially the children, and particularly in terms of food.
 4 Psychosocial support and the family
The case example shows how adding a focus on PSS can HBC before a PSS HBC with explicit PSS How to increase your
Tools to assist you
enhance the home-based care work in the community. The focus focus PSS focus
table on this page summarises how a home based care worker, The home based care
like Thomas in the previous case example, can change the way worker does this by:
a service like HBC is delivered in a way that makes a dramatic Listening and not just The home based care
impact on someone’s life. giving advice, worker uses some
specialised tools to work
Keeping confidentiality;
with families and children on
Respect and dignity Respecting the views of
sensitive issues:
One of the simplest and most effective ways of bringing HBC volunteer does the client;
Memory work is
psychosocial support into your HBC work is through treating these same activities, but Washing, nursing,
particularly suited to clients
HBC volunteer visits home tries to support the client and feeding the client
people with dignity and respect, and listening to what the who want to do succession
where there is a bedridden emotionally and socially. respectfully to maintain the
patient and family find helpful. This is especially important planning and life review
client, washes and dresses Most importantly, the HBC dignity of the client;
when people are feeling sick, dealing with difficult and Hero work, to support
bedsores, cleans house, worker treats the family Asking what the client
clients to look at their lives
embarrassing physical situations, and when people may be prepares food, focuses with dignity and respect. He finds helpful and what he or
in the light of how they are
facing death or loss. Showing respect and listening deeply to purely on nursing, nutrition or she tries to give positive she is struggling with;
and have been heroes
and hygiene feedback on what the family
families one is working with is also something that is difficult to Including family members
is doing well to cope with The Weaving Hope
keep on doing for a long time, because one can become quite in the process;
the illness. handbook provides
emotionally drained and desensitised. Taking notice of children in information on dealing
the family and how they are with sensitive issues like
coping with the impact of disclosure of HIV, and
illness on the family; supporting children with
“Involvement of the whole family will make the sick
Talking about difficult and bereavement
patient feel loved and have a sense of belonging.” sensitive topics like death
Home-based care worker and dying where needed.

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Listening
Although it may sound strange, children and families affected
by illness often say that one of the most helpful thing that HBC
workers do for them is to be present and to listen to them.
Listening deeply or counseling is a powerful skill that HBC
workers may use in many different situations. Here are some
reasons why deep listening is so helpful:
• It gives space to vent some of the difficult feelings that
may come out of experiences of illness
• It makes us feel less lonely or crazy, and that we are not
the only person going through something
• It stops our minds looping around the same thoughts in
a stuck way – by saying these thoughts out loud it helps to
organise our thinking
• It helps us to unpack our problems in a way that gives us
a different perspective
• It helps us to find our own solutions to our situation

Good listening sounds simple, but it is actually quite difficult to

do. It is a skill that we need to keep developing in ourselves. As
HBC workers we are the main tools of our work. Deep listening
is difficult because we often find it difficult to tolerate other
people’s distress. We want to rescue them, fix their problems,
reassure them, give some advice and take their pain away. This
is a natural and healthy response, but in speaking to people who
are living in difficult circumstances, they often don’t want to be
rescued or quickly reassured or even to be given advice. Rather
they want someone to really hear what they are saying.

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Listening Skills Tips
Here are some tips about basic listening or counseling skills
to help you keep the space open for people to really talk
and be heard:
• Try to say as little as possible, especially when a person
is first talking. Rather show that you are listening by
encouraging the person with small comments, nodding
and the way you focus on what they are saying.
• Ask questions about what they are saying to get even
more understanding about what they are talking about.
• Try not to give too much advice – rather ask questions
about how that person has dealt with similar situations
before.
• Show empathy when they talk about difficult things, like
by saying “That sounds very tough” or “I would have
been very upset too.”
• Listen deeply for the underlying message in what the
person is saying. For example someone may be very
angry about something, but underneath that they are
actually feeling very hurt by what happened.
• Listen to what is happening inside yourself as a person
talks. Your own feelings about what is happening are
often a key to what is going on inside that person. For
example, maybe as someone talks you start feeling
helpless. That does not mean that the situation really
is helpless. It just shows how helpless that person is
feeling. This is called transfer of feeling. You can deal
with this by simply recognising that it is happening and
in doing that, not getting drowned by the feeling that
the person is sharing.
• Focus on the person’s strengths and what has worked
well in the past.
• Try not to talk about yourself too much – for example
don’t say “That reminds me of the time I …”
• If you don’t know how to respond to something, be
honest and say “I am not sure what to say about that –
maybe we need time to think about it.”
• Let a person talk about what interests him or her – it is
one of the great joys in life to talk about something that
is important to us. Even if you are not so interested in
the topic, try to appreciate that person’s enjoyment of it!
14
Children’s stories about their day-to-day experiences
and their more intense emotional responses to what
is happening are often neglected in families affected by
illness. Making time to listen to children, or even better,
encouraging parents to take time to listen to their children,
is very helpful to their psychosocial wellbeing. One mother
who was very ill and bedridden said that she started seeing
her illness as a gift – it enabled her to spend time with
her children just listening. Every day the children came
home from school and told her the stories about their day
and she had plenty of time to just listen and build on her
relationship with them. If she had been healthy and active
she may have been so busy taking care of the family that
she may have missed this opportunity to simply spend time
listening to them and encouraging them in their lives.
Disclosure HBC before a PSS HBC with explicit PSS How to increase your
Tools to assist you
Experienced HBC workers often talk about their difficulties focus focus PSS focus
helping people with disclosure of their HIV status. Many The HBC worker makes use
people are frightened to disclose their status because of family of existing tools like:
and community stigma and misunderstanding about HIV and Weaving Hope, Unit 3 on
In line with the principle of
AIDS. As a home-based care worker who is committed to facilitating disclosure of HIV
participation and community
psychosocial support, talking about disclosure with a client can The HBC volunteer is not The HBC worker makes use status, illness and expected
support, she trains
sure how to help the client of the messages covered in death to children
be a meaningful way to help the person to make a decision households and neighbours
to deal with the secrecy and this section on disclosure The REPSSI Memory work
that is right for him or her. The table to the right shows how to help with nursing,
fear related to disclosing to gently support people to manual: exercises 15,16,
a home-based care worker before and after PSS knowledge nutrition and hygiene, and
their HIV status, especially disclose their status, when 17 on Talking about HIV
also explicitly addresses
might handle such a situation. in talking to their children they are ready, to those that disclosure
the issues of disclosure,
about the disease. they trust. The Memory Work
bereavement and succession
planning. manual provides guidelines
“Open communication will about how to disclose
appropriately to children of
stop accusations and the family
different ages.
will be able to work together
to achieve a goal.”
Home-based care worker
• Disclosure needs to take into account the fears, wishes • Preparations need to be made to support children as
and views of the client or parents of children much as possible after disclosure
• Disclosure must be voluntary - people must decide when • Communication with children needs to be simple,
is the right time to disclose to their children or family honest and precise
• The information shared with HBC volunteers during
HBC service delivery is sensitive and confidential for all HBC workers have an important role to play in facilitating
Here are some important reminders about disclosure, concerned disclosure but they should make sure that they allow their
especially in relation to children’s wellbeing: • Facilitating disclosure involves encouraging the client to clients and the client’s family to guide their involvement in this
• Disclosure is a process that takes place over time. It is not take responsibility for communicating the information to process.
a one-off event family members

15
The psychosocial aspects of long illness
Any family affected by a long illness, be it cancer, HIV and
AIDS, diabetes or TB understands the strain that this can place
on an individual, family and community. The impact of a long
illness can include:
• Serious financial strain
• Exhaustion – both physical and emotional
• Irritability and anger
• Depression and hopelessness
• Focusing only on the pain or discomfort of the illness
• Feeling rebellious and not wanting to comply with
treatment
• Relationship tensions, blaming and anger
• Becoming socially isolated
It is important for a HBC worker to be able to recognise these
normal responses, without feeling overwhelmed or helpless
in response. Here are some ideas about how one might cope
with one’s own reactions to these signs of long term stress:
• Recognise that these are normal responses to a very
difficult time in the family’s life
• Try to see that these responses are phases of different
reactions that will eventually pass. People will usually move
from one phase to another. Such phases of reactions to
illness may even be a very important and healthy way of
processing what is happening.
• Illness has a way of taking over everything and becoming
all-consuming. Try to remember other times in the family
life – for example ask questions about how people met
one another, or about when a child was born. Try to
extend the sense of life beyond this illness – to times
before and after the illness.
• Try to focus on things other than the immediate pain and
discomfort of the illness. For example ask the patient
which part of their body feels the least painful, or which
part of the day is the least uncomfortable.
• Ask patients and family members what they find the
most helpful.
• Make space for the family to talk openly about what is
happening, rather than shutting them down or advising
that they “snap out of it”. Sometimes when people are
given space to talk about what is happening (to vent), the
energy is released and it no longer becomes such a tense
issue.
• Empathise with each person in the family before asking
them to consider the other person’s point of view.
• Give a lot of positive encouragement and comment on
what you see people doing well.
• Encourage family members to talk to one another about
their feelings, rather than becoming the “go-between” or
peace-keeper.
• Focus on what is going well and how people are showing
amazing strength in coping with what is happening.
• If a family shows any sense of humour, like joking or
laughing or smiling about something, this is a healthy way of
releasing tension.
16
• Encourage people to stay in touch with friends and even
to go out and have a break from the situation at home.
Encourage them to keep up activities that they enjoy, like
church, attending savings club meetings or watching sport.
“Being able to support someone who is dying by talking
openly about death is one of the greatest privileges. It
brings us to the heart of issues about life and death and
relationships.”
Home-based care worker
Talking about death and dying
Talking about death and dying is one of the most difficult
things that HBC workers struggle with. It feels very awkward
and insensitive to talk to someone about the possibility of
passing away and one worries that one may be introducing
the idea of “giving up”. Yet most people who are facing
death after a long illness say that it is a relief for them to be
able to talk honestly about dying. This is because people
who are dying may feel that they have things that they have
not said or done that are important to them before passing
away. They may also have fears about death and concerns
about how their family members will cope with their loss.
Opening communication about death can strengthen family
relationships, bring new perspectives and hope at one of the
most important times of life.
Here are some ideas from HBC workers about introducing Talking about death and dying is both a privilege and at the Succession planning
the discussion about death and dying in a respectful and same time very emotionally draining. As a HBC worker it is “Succession” simply means “afterwards”. In other words it is
sensitive way: important that you are feeling quite strong in yourself and that about “what happens next”. In HBC work this usually means
• Introduce the idea quite generally by saying something like you are comfortable talking about this sensitive topic. If you planning what will happen after a person has passed away.
“If there is anything you would like to talk to me about, are not feeling strong enough to open this discussion, try to This is obviously especially important when there are children
please feel free.” find ways of gently referring the person to someone else who involved in a family where the parents are very ill. Here are
• Listen out for signs that a person may want to talk about they trust. some ideas how a person who is serious about PSS might
death. For example, some people may ask you what you handle such a situation.
believe about life after death or may have other questions
about your faith or experiences of death. Use these
questions as a gentle introduction to show that you are HBC before a PSS HBC with explicit PSS Tools to
How to increase your PSS focus
comfortable with talking about death. focus focus assist you
• Don’t pry or ask very direct questions, but use gentle
Memory work is an important tool
questions to open up discussions. that can be used to support parents
• Spend more time listening than talking. Don’t rush to to communicate with their children. Memory
The HBC volunteer is not
giving reassurances or advice. The HBC volunteer with The parent can bring the child into the Work Manual
sure how to help the client
• Respect the person’s religious beliefs and use questions PSS knowledge finds a process of making the memory book and Exercises 18
to deal with the practical
sensitive and respectful way plan together with them for the future. It on planning for
to open up their own reflections rather than using this as and emotional issues
to talk to the client and also gives the children an opportunity to the future and
an opportunity to give your views. around death and dying.
the family about death and ask questions about their parent’s illness Exercise 19 on
The inexperienced HBC
• If your relationship is strong enough, you may ask the dying. He or she provides and to be involved in discussions about making a will.
volunteer may wait until
person if there is anything that he or she feels needs to be emotional support, as well who will take care of them if their parent
a person has passed away
done in case he or she becomes more ill. as assisting with practical dies. Parents can be encouraged to
before making arrangements (see www.
arrangements and referrals. organise the child’s legal documents like
• Ask if the person would like to speak to someone else for the care of children. repssi.org)
birth certificates, write wills and appoint
like a religious leader or trusted elder. a guardian for their children in the event
of their death.

17
 5 Psychosocial support and the child
Increasing your focus on psychosocial support is especially
important when it comes to children. Home-based care
workers are often trained to support the adults who are sick
in the family, and as they gain experience, they often comment
on the need to develop more skills in supporting the children
in families affected by illness.

What makes children vulnerable?

The following case studies show some of the ways in which
children may be made vulnerable by HIV and AIDS in the
family:

18
 Case Study:
What children are saying
Children working with Batsirai, Chinhoyi, Zimbabwe - identified issues affecting them within the home-based care setting.
Spiritual Aspect: issues relating to one’s connection with a higher power which puts
one in the correct equilibrium with life
• Disorientation on spiritual issues.
• Fear of being a captive to benefactor’s belief system “I am afraid of being forced into a church
I do not quite accept because of the help I am getting.”
• Lack of faith in any higher being. “Why did my parents die if there is a God?”
Physical: issues likely to affect the physiological wellbeing of the child
• Lack of food, shelter and clothing.
• Child’s own health concerns become a secondary matter as compared to that of the ill parent.
• Lack of knowledge about and access to ARVs and treatment for opportunistic infections
• Lack on information on reproductive health matters.
Cultural Aspect: conforming to norms and values. Failure to conform may result in
child being labeled a deviant
• Adherence failure because of pressure from family and relatives wanting conformity to
traditional practices such as taking conventional and traditional medication together.
• Loss of locus of control. “I am sometimes forced to engage in rituals I do not understand.”
TMental: issues likely to interfere with processes of reasoning for the child
• Anxiety arising from lack of money for school fees due to illness of parents and caregivers
• Looking after siblings and balancing that with own educational and personal ambitions,
“Should I drop out of school to get married?”
• Lack of concentration due to stigma in school “because my parents died of AIDS.”
19
The Social Aspect: refers to the child’s ability to integrate harmoniously with
the community
• Peer pressure: “Sometimes I am tempted to abuse drugs to get along with my friends”
• Lack of time to play. “Sometimes I have too many chores at home to find time to play.”
• Environmental security is compromised due to parent/guardian bringing different
partners home. “What should I do when too many different people I do not know are
entertained at home?”
• Stigmatization and isolation. This may result in poor relationship with peers due to
stigma related to ill parents.
• Lack of parental guidance due to illness.
Emotional Aspect: issues that evoke either positive or negative feelings
• The burden of having to work to supplement family income
• Lack of parental love.
• Loss of hope for the future.
• Frustration emanating from dealing with parents who do not want to be tested in
order to establish their HIV status or refuse to take ARVs. “Why are parents fearful
of disclosing their HIV status and to talk about the disease?”
• Fear of infection. “Will I get infected from looking after my sick parents?”
• Feeling of inadequacy “How do I take care of parents who are ill and where should I
take them to when they are sick?”
• Grief “Being denied the opportunity to participate in the burial of my parent hurt me.”
• Feeling vulnerable to abuses. “How do I tell that I am not comfortable?”
• Feeling a void where there is separation from siblings.
• Anxiety about the future “What is a will? How do I get my sick parent to prepare a will?”
• Fear of loss of family legacy “How can a memory book help my family?”
The previous case study shows how children themselves
are able to say how their situation is affecting them in many
different parts of their lives.
Activity 2:
How is illness in the family
affecting children in your areas?
Think about some of the families that you support
with home based care:
What have you noticed about the way that illness in the
family is affecting the children in practical ways in terms
of their material, health and educational needs?
What have you noticed about how children are
affected emotionally and socially – how is their behavior
different?
What have you seen as good examples of how children
have been supported by caregivers or home based care
workers?
What have you noticed children doing well to help
themselves cope with their situation?
Resilience
Resilience is about the ability to bend without breaking and to
bounce back. It is the natural strength and coping that children
and families affected by difficult situations have to deal with “If the community becomes
their circumstances. We can learn a lot from children and involved in PSS, children can
families who have managed to cope with illness in the family. easily benefit from all members
One of the most powerful and helpful things you can do as a of the family, community and
home-based care worker, is to focus on the strengths of the stakeholders.”
children and caregivers and to learn from them about what Home-based care worker
is working well. Take time to comment on positive things that
they are doing and ask questions about what helps them to
cope well.
A difficult balance is trying to encourage children to be active
and cope well with their situation, while giving them space
to talk about their painful feelings about the situation. At the
same time we wish to try and give children the space to play
and have fun and simply be children.
20
This table shows how a home based care worker can increase HBC before HBC with explicit How to increase
Tools to assist you
his or her attention to the psychosocial wellbeing of children in a PSS focus PSS focus your PSS focus
families affected by illness.
The volunteer tries her See pages 41-43 for details
best to protect the children
Consistency
from assuming too much Weaving Hope Unit 2 -
One thing that helps children cope with difficult situations is
responsibility, and tries to supporting children who have
consistency. Children feel safer when things stay the same. The HBC volunteer finds
ensure that they can remain a caring responsibility
it hard to advise the
Of course this can be a challenge when a family is affected by children with time to play and
parent/guardian about
illness, but here are some ideas from experienced community be part of supportive groups The Club of Life (in Weaving
how best to communicate
like Kids Clubs. Hope Unit 2) is a useful tool
health care workers on how to support children through with their children and
The HBC volunteer is for children and caregivers
providing consistency: help their children. She
very sensitive about the Children need support during to identify people who have
• Try to have the same community health care worker finds it difficult to see
role of children in the times of parental illness so influenced their lives and
how she can help children
supporting the family over a long period of time. Children bond household and balances they are able to adapt to the supported them – children
who have a caring
quickly with caring adults and having the same person around the child’s need for play, changes. Offering time, love and with caring responsibilities
responsibility for their
active involvement in guidance helps to support the need to have a solid support
for a long time helps children feel a sense of consistency. parents/guardians
the family and space for children. system
• If you as a child care worker are going to be away for some and feel themselves
different responses to
time, try to let the child know in advance and remind the loaded with
their situation. Learning life skills - maybe Kids Club Manual
responsibilities that would
child again that you will be away, but will come back. Try through a kids club or camp -
normally be for adults.
not to shock the child with sudden disappearance but keep can help the child to cope with Hero work manual – hero
This usually deprives
their situation. Life skills include work with groups of children
children prepared of everyone’s movements. children of the time to
decision making, problem
• Try to keep to a structured routine during your visits. enjoy their childhood
solving, creative thinking, Manual on “Mobilising
Children respond well to set patterns of doing things. For communication, inter-personal children and youth into their
example, use the same greeting ritual each time, then relationships, coping with stress own child and youth-led
follow the same steps in how you work with the family and and emotions organisations”
children each time you visit. Try to encourage the family to
set up a solid routine for the child, like a daily programme.
This need not be something formal or written, it is just
about establishing patterns of doing things.

21
• Create fun special rituals for doing things like chores. For
example, make up songs and rhymes and patterns for
doing things like gardening or sweeping.
• Even when there are big changes in the family, like when
someone passes away, try to keep consistency in the child’s
everyday life. For example, keep to the same patterns
of waking up, washing, eating, going to school etc. Even
during big events like funerals, try to keep the child’s life
as consistent as possible. It helps to know about these
patterns before a parent passes away, so take an interest
in how families run their lives so that you can pass on this
information to other caregivers.
• Allow children to find their own safety objects or
consistent patterns. For example the child may have a
favourite blanket or toy. Or the child may have a particular
bedtime or ritual like saying prayers. These objects and
patterns of behaviour can be very comforting for the child.
Helping children to cope with loss
Many children today are coping with multiple losses. These
may include loss of caregivers or parents, loss of hope for
the future, loss of sense of security, loss of enthusiasm for
life. Remember that the way boys and girls, young and older
children experience loss may be very different.
It is important to try to reduce the stress factors in children’s
lives at this time and for HBC volunteers to build trusting
relationships with the children through regular home visits and
showing an interest in them and their problems. But be careful
not to re-traumatise the child by dwelling on their problems.
It is perhaps more important that children are supported to
engage in normal childhood activities like play and sports and
attending school or joining a kids club, rather than the HBC
volunteer putting pressure on them to talk about the loss and
to express pain. At the same time, constructive memory work
like writing hero books or creating a memory box can help the
child to make space to deal with loss in a positive way.
Attending school is vital - it helps children affected by HIV
and AIDS to cope with their situation and regain a sense of
stability and normality in their lives.
22
Here is another table that shows how a home-based care HBC before HBC with explicit How to increase
Tools to assist you
worker can increase his or her focus on psychosocial support a PSS focus PSS focus your PSS focus
in a situation such as supporting a child with loss. There are many good tools
to help children with grieving.
Talking to children about their own illness The home based care worker
As caregivers and HBC workers we often think that children will choose one that he or she
feels will suit the child.
are not aware of what is going on and that it is better for
Weaving Hope - Unit 4 on
them if we keep difficult information from them. However,
supporting grieving children
experience has shown that many children in communities
The Tree of Life process
affected by illness are very aware of what is happening around is explicitly designed so
them and even carry a lot of concerns about their own health. The HBC worker builds a that children who have
It would seem that as HBC workers we have an important trusting relationship with the experienced loss can talk
role to play in sensitising the parents and communities of The HBC volunteer child. He or she starts to create about it but only if they wish
The parents of a child are provides active support spaces for the child to talk about to, no pressure is put on them
children affected by illness to find sensitive ways of talking to
sick or have passed away, to the child through what is happening. He or she to “get it off their chest,” “let
them about their health. but the HBC worker does the bereavement and tries to link the child with an it all out” etc
not know how to talk to grieving process, while adult that he or she trusts, so The Tree of Life exercise
Here are some ideas of how parents might talk to children the child about the loss. helping the family keep that the child receives ongoing allows a safe space for
about their own illness, or the illness of a child or sibling: to normal routines. support from someone in the children to revisit some of
community to talk about his or the difficulties that they have
• Start gently by saying that it seems that illness is visiting
her feelings. experienced in their lives but
a lot of homes in the community these days. Ask if this
in a way that does not further
ever worries them about their family. traumatise them
• Try to open up the discussion to hear their views and
“Child and youth-led
concerns. organisations” suggests the
• Think about finding an honest and simple way of telling child-to-child approach in
the truth to children. Although very painful, this may be mutual counselling, recognising
that children can act as
better than leaving the child with a lot of worries, which is
important resources among
not good for their health.
themselves.

23
• Try to answer questions honestly in a simple and hopeful
way, without giving too much unnecessary detail. For
example, if a child is HIV positive, you can explain that
many children who take good care of themselves live a
long and happy life just like other children.
• Try to relate sensitive illnesses like HIV and AIDS to
other illnesses like diabetes, TB and cancer, which have
similar consequences for the child and family. In this way
you are normalising the illness like any other illness. Bring
out the similarities, like the need to eat healthy food, play
and have fun, get good exercise, take medication regularly,
and go for regular check-ups.
• Talk about how to deal with this in terms of other
children at school or in the neighbourhood – find out if the
child would like to keep things confidential or would like to
have help in talking to his or her friends about illness.
• If the child has already been exposed to some teasing,
try to talk about this and how the child might cope with
what people are saying in a constructive way. In recent
research it was found that children who are open about
their illness and talk directly to people who are teasing
them cope better than children who try to avoid what
is happening (see research report on stigma towards
children affected by HIV and AIDS at www.cindi.org.za).
They also cope better if they can talk to someone at home
about what is happening and think together about how to
address this.
Caregivers supporting children
It is much more helpful for a child to receive good care from
their own parents or caregivers, than from a professional. Try
to strengthen the relationship between the caregiver and the
child whenever possible. Here are some practical ways of
doing this:
• Comment on positive things that you have noticed about
the child to the caregiver
• Comment on things that you see the caregiver doing well
for the child (be careful not to be patronising or sound like
you are teaching!)
• Give explicit training or information on what helps children
cope if the caregiver seems interested in receiving such
information
• If the main caregiver is very ill, try to find out from the
child who else in the family he or she trusts and likes being
with. For example the child could have a caring uncle or
grandmother. Then try to strengthen this relationship and
involve that adult more in the child’s life.
• If caregivers are caring for children who are sick or on
ART, ensure they have all the necessary knowledge on HIV
and AIDS and ART adherence to support the child
24
Child Participation
Most of our traditional cultures (Western, Eastern and
African!) focus on doing things to and for children. In these
older traditions, children are passive and are not actively
involved in shaping their lives. But some modern thinkers from
Africa and South America, like Steve Biko and Paulo Frere,
say that we become more empowered when we are actively
involved in decisions and processes affecting our lives and our
community. And so, more modern ideas around psychosocial
support are about consulting and involving children in different
aspects of their lives. This helps to build the child’s confidence
and ability to cope in life.
How can one encourage child participation during home-
based care? Here are some ideas:
• Keep children informed about what is happening in
the family
• Ask them about what they find helpful
• Involve them in decisions affecting their lives
This does not mean putting too much of a burden on children
to become little adults. But it does mean making space to hear
their views and help them to feel more in control of what is
happening to them.

Activity 4:
Child participation in home
based care work?
Try asking some of the children you work with these
questions. You can ask them one by one or in a small
group.
• What are some of the things that you have managed
to do since this illness visited your home?
• How did you manage to stay strong and cope with
what is happening?
• What good changes have you seen? You may need
to think really hard to see some good changes.
• What do you find is helpful from other people?
What advice can you give people who are trying to
help children like yourself?
• If you could give a message to other children who
are in a similar situation, what would you like to say
to them?
REPSSI Child Participation Guide
REPSSI has written a guide to help you to use child
participation approaches more in your work. You can
download this guide free of charge from www.repssi.org.
25
Supporting older caregivers like
grandparents
When working with caregivers of children and families
affected by HIV and AIDS, we should not forget the many
older caregivers, mostly grandmothers, who are taking care
of many vulnerable children. Here are some ideas on how to
help older caregivers in communities where you are working:
• Visit some of these caregivers and ask them about what
they would find helpful.
• Assist them with child care so that they may attend church
meetings or do their own shopping or have some time off.
You could organize some of the youth in the community
or CBOs to assist.
• Help them to trace family documents so that they may
apply for grants.
• Organise with the local clinic that you can collect their
medication for them so that they do not have to travel so
much.
• Remind their extended family to support them with things
like school uniforms, which many elderly caregivers find
very stressful to pay for.
• Help elderly caregivers and teenagers to explore ideas on
how to bridge possible generation gaps

Consultation with elderly caregivers
CINDI Network Members did some research with
elderly caregivers to see what helpful forms of support
they would find. You can download this report free of
charge from www.cindi.org.za.
• Build in reflection processes to ensure that resources
used by your organisation are directed to maximise the
benefits for children
• Remember the “best interests” principle – all your actions
with children must be in the best interests of those
children.

Ethical considerations when working with

children
In developing programme plans and policies for your
organisation, the following ethical considerations are
highlighted with particular reference to involving and including
children and PSS:
• Try to work on prevention of exposure of children to
further suffering, rather than only focusing on alleviating
the suffering of those already exposed to harm.
• Use tools that do not further traumatise the children.
Wherever possible work with children in groups where
children can share their problems and come up with
shared solutions.
• Respect privacy and avoid stigmatising children affected
by particular situations.
• Be sure that you have the consent of caregivers and
relevant authorities before implementing any programmes
affecting children
• Refer children for specialised support where needed

26
 6 Psychosocial support and the community
Home-based care workers may have a powerful impact not HBC before HBC with explicit How to increase
Tools to assist you
only on the families and children they support, but on the a PSS focus PSS focus your PSS focus
general community environment as well. This may best be
Advocacy tool kit - this
done by linking with existing community structures, be they toolkit can assist you to raise
traditional structures, community-based organisations or non- awareness (locally, nationally
governmental organisations. and internationally) around
Stigma has been psychosocial issues.
Involve community leaders and
addressed in the sense
people living with HIV in fighting Journey of Life – can help
Caring communities There is still stigma and that advocacy, rights-
stigma and discrimination. Use communities to provide
The table to the right shows some ways of working towards discrimination in the based community
prevention education to fight psychological and social
a safe and caring community which supports all families and community so the HBC awareness and other
stigma and discriminating so that support to children. It aims
volunteer may have work has been done to
children affected by illness. people know the truth about to increase the awareness of
to cover up her HBC create a more open and
HIV and AIDS. communities to understand
uniform and pretend this supportive environment
Educate the community on the needs of children and
is a social visit. with regard to people
children’s rights. how to support them. It
“If the community becomes living with and affected
can be used to involve the
involved in PSS, the “Dura by HIV and AIDS.
community in thinking about
Ramambo” (Chief’s Granary) and deciding on ways to fight
can be used in the right stigma and discrimination
manner to feed the sick who
do not have a good balanced
diet from their homes in case
of a breadwinner being sick.”
Home-based care worker

27

Activity 5:
Creating caring communities
Try to meet together with some community leaders,
community-based structures or youth organisations in
an area where you are working. Discuss the following
questions:
• How are people in our community behaving
towards families and children affected by HIV and
AIDS?
• Which people or groups are making the most
negative comments?
• How can we include those people constructively in
creating a caring community?
Research on stigma
CINDI and Sinani have done some research or stigma
towards children and families affected by HIV and AIDS.
You can download this report free of charge from www.
cindi.org.za or www.survivors.org.za
Changing stigma towards people affected
by HIV and AIDS
Many people are still unclear about the transmission and
course of illnesses such as HIV and AIDS. This can lead to
negative comments, discrimination and rejection of children
and families affected by the disease. A recent research report
on stigma towards children and families affected by HIV and
AIDS in KwaZulu-Natal, South Africa (see www.cindi.org.za)
showed that:
• People who show stigma have little information or
inaccurate information about HIV transmission
• The people who show the worst stigma may in fact be
people who do not know their own status but fear that
they might be HIV positive
• Children who are HIV positive and have at least one
caring adult who helps them with their treatment and talks
openly about the illness are coping well
• People who are in pockets of support (like in a caring
family or part of a support group of HIV-positive people)
cope better with stigma
• People who deal openly with what people are saying
rather than avoiding what people are saying tend to cope
better
28
Here are some ideas for HBC workers to include into their
community practices in order to reduce stigma:
• Keep offering community awareness events about HIV
transmission or link with other CBOs and NGOs who are
doing information and awareness raising. Try to be creative
to reach those who do not have good information, as
many people attending such events already have an
interest in the topic. The better information a community
has about HIV, the less stigma they tend to show towards
people affected by the illness.
• Don’t just use the usual boring messages about HIV!
Rather open honest and lively discussions about local
and cultural dynamics about HIV – for example: “Why,
despite all our knowledge about HIV, are we not using safe
practices in our community?”
• Spread the message that this illness is visiting all our
families and that we are all affected by HIV and AIDS.
There are no superior people who are unaffected by the
disease. As one grandmother said “I don’t discriminate
against people who are HIV positive, because I know that
this disease can visit my home too at any time.”
• Try to focus on several illnesses at once, such as diabetes,
high blood pressure, TB and cancer. Talk about HIV and
AIDS in the same way, as it shares many similar aspects
and is like all other diseases. The same principles apply
for all diseases, such as eating healthy food, having good
exercise, having fun and reducing stress, taking treatment
 regularly and having regular check-up visits. 30 shows examples of HBC workers supporting people who
• Try to de-sexualise and de-scandalise talk about HIV. are on anti-retroviral treatment (ART) for HIV and AIDS. Here
Talk more about general hygiene practices that apply to all the client has been stabilised on ART, is no longer bed-ridden,
health promotion, for example using gloves in any health and does not require basic nursing care . This scenario also
care situations. includes children who are HIV positive and may be on ART
• As a HBC worker it is very important to never disclose
anyone’s HIV status, while at the same time talking a lot
about the illness in a way that is honest and simple, and
never sensationalised.

Access to treatment
A very important aspect of PSS is ensuring that people
affected by illness have access to the proper treatment. This
is vital to psychosocial and physical wellbeing, and applies
to both adults and children. Having access to treatment
helps people to live a long and healthy life. It gives hope and
increases people’s tendency to go for testing. It also reduces
stigma towards people affected by illnesses like HIV and AIDS.
Supporting people with access to treatment may be done in
practical ways directly with families affected by illness. It may
also be done at the level of the community and health centres
(eg clinics). In some countries this is a bigger issue that still
needs to be tackled at a government level and may become an
advocacy focus.

Home-based care workers play an important role in helping

people to access treatment. They also play a crucial role in
helping people to manage their treatment. The table on page

29
 Actions/role of HBC volunteer Tools (see pages 41-43 for extra details)

The HBC volunteer supports the client/child to understand ART and how it works, to be aware of side IFRC/ WHO training package
effects, adhere to treatment, encourage and support client in self care. He or she ensures that women in Tracing book “HIV prevention, treatment, care and support”
the community are informed about PMTCT.
Manual on Mainstreaming PSS into paediatric HIV treatment

The HBC worker ensures that the client/child has resources for transport for medical checkups and
Try to discuss with your donors including these costs in your proposals and budgets.
collection of medicines. Here some project costs include a budget for this transport.

Ensure the client has knowledge on making positive choices about diet, exercise and other lifestyle issues
Reference a good resource for nutrition for children on ART. CINDI has a booklet, but
that protect or damage health (positive living) Ensure the client/child has nutritious food so that ART can
maybe other international material may be available?
work effectively. Encourage community and doorstep gardens.

Kids Clubs manual

Try to include a focus on things other than the illness and especially on children in the household. Mobilising children and youth into their own child- and youth-led organisations
Encourage and support children to join kids clubs and other groups, to make a hero book , to rejoin
school if they had to drop out when parents were sick. Manual on making a Hero Book
Tree of Life

Positive Development – IFRC/Health Link/UNAIDS.

Encourage clients to join or set up support groups if they are not members of such groups already. The manual was developed to assist people with HIV to become involved, organised
and allow their voices to be heard loud and clear

Encourage guardians/grandparents caring for children to join “grannies clubs”. Forthcoming IFRC/REPSSI manual on Grannies Clubs

Support parents of children who are HIV-positive - supporting them to disclose the status of the
child to the child, ensure parents/guardians have the necessary information to give to children who
are HIV-positive.
Remember information given to children must be age appropriate. Weaving Hope Unit 5 on Breaking the Silence with Children

Provide a safe space for children to express themselves.

Identify local resources and support structures in order to help HIV-positive children.

continued on page 31

30
 Actions/role of HBC volunteer Tools

Support children who are on ART-

Respect privacy and confidentiality.
Involve the parent/guardian and family members as much as possible and recognise their needs as well.
Treat children and their family members as active partners rather than passive recipients. Manual on mainstreaming psychosocial care and support within paediatric ART
Encourage children to be involved in normal day-to-day activities- going to school, playing, Tracing Book
joining a kids club. Making a Hero Book
Both children and parents/guardians need to feel that their ideas and strengths are recognised, especially Kid Club manual
when working with adolescents.
All children are unique – identify and cater for their individual needs.
Encourage caring everyday support from families, teachers, friends and communities.

31
The psychosocial aspects of taking
treatment
Having to take regular treatment for an illness can in itself put
quite a strain on a person. This can include:
• Worrying about the cost of the treatment, which creates
more stress
• Worrying about having a healthy diet and enough food
to take the treatment
• Having to find ways of remembering to take the treatment
• Dealing with people’s reactions to taking treatment, or
worrying that people might find out about the treatment
and speculate about one’s health
• Having other physical reactions to taking the treatment
• Feeling resentful and tired of taking the treatment every
day
• Feeling anxious that every new symptom or body
change means that one is getting sicker
Once again it is important for a HBC worker to be able to
see these normal responses, without feeling overwhelmed
or helpless. HBC workers may also need to find a way of not
taking on every problem of the patient or it may affect their
own health.
Here are some ideas about how one might support someone
through these reactions to taking treatment:
• Recognise that these are normal responses
• Again try to see that these responses are phases of
different reactions that will eventually pass. People will
usually move from one phase to another. Such phases
of reactions to illness may even be a very important and
healthy way of processing what is happening.
• Make time to listen empathically to what the person is
struggling with.
• But don’t get drawn into their helplessness – try to find
out what helps them to cope and make space for them to
find the solutions to their situation
• Encourage people to join a support group – this is very
helpful for both their psychosocial wellbeing to be
connected to other people who are going through similar
problems, while at the same time getting helpful ideas
and staying in touch with the latest developments about
treatment
• Try to link the person to government services, churches
or NGOs who are able to offer social grants, nutrition or
assistance with vegetable gardening
Keeping gender in mind
Traditionally care and support are associated with women.
As you embark on a process to develop human resources
for PSS in your HBC programme it is important to reflect on
who is getting involved with this work. To mainstream PSS
effectively it is necessary for everyone - both men and women
- to internalize the value and importance of PSS to adults
and children. Take care to ensure that it is not only women
working in your HBC programme who are involved with PSS
32
mainstreaming. Men and women need to be involved in PSS
mainstreaming at all levels from outside technical support, to
programme management, field workers and volunteers.
There is a need to address the considerable power differences
between girls and boys. The manual on child-led organizations
describes a self defence programme for girls which also helps
to make a clear stand in the public discussion on gender
violence or encourages such a discussion. Self defence
courses for girls are important as a protective measure in an
environment where male sexual violence is the norm. The
manual recommends the following:
• Offering a range of cross gender activities creates an
experimental space where new roles and gender identities
can be explored
• Self defence for girls is itself a strong statement inside
and outside the organisation
• Equal representation of girls in all trainings is imperative.
Equal representation in membership is desirable. Equal
representation in leadership should be strived for, but not
implanted from outside unless the members decide to
introduce gender quotas
• A gender audit is helpful to make visible hidden
gender issues in an organisation
 7 Advocacy and networking
What do we mean by networking and
advocacy?
No single organisation can tackle the problems of people
living with HIV (PLHIV) and orphaned and vulnerable children
alone. It is important to collaborate with local government
authorities, local leaders, women’s groups, faith-based
organisations, youth groups and others. Partnerships with
PLHIV and organisations of PLHIV are a vital part of effective
support for affected adults and children. These are all types of
advocacy – working together to make a change.
Put more formally, advocacy is a set of targeted actions
directed at decision makers in support of an important
issue. There are some important advocacy issues in both
HBC and PSS programmes. REPSSI is currently developing
a psychosocial support advocacy handbook to support
organisations wishing to increase this focus.
Networking and advocacy for
psychosocial support in home-based
care work
Networking and advocacy are important components of
mainstreaming PSS in HBC programmes. There are three
main reasons why networking and advocacy are significant
skills for PSS mainstreaming.
1. You may encounter resistance to PSS. Sometimes this
resistance may also come from other departments or sections
within your organisation or the board of your organisation.
2. It is very important to network with other organisations
offering PSS for referral and support. Being in a network with
other organisations will help your organisation to develop
confidence and skills in this area.
3. Advocacy work that targets policies and government
services is an important strategy that helps us to reach large
numbers of children with PSS.
33
Case example:
Batanai HIV and AIDS support group
After embarking on mainstreaming PSS into their
programme, Batanai HIV and AIDS support group is now
interacting with organisations like the Salvation Army
Masiye Camp; other government line ministries like the
Ministry of Education and the Department of Social
Welfare which are key players in providing PSS to children.
Batanai is also working together with Social Welfare and
Registration office to provide children with birth certificates
and accessing other NGOs which are involved in nutritional
aid like CARE International
What types of advocacy can we be
involved in?
Look for partners who can make a positive difference in
the lives of PLHIV and vulnerable children. Networks are
best formed between individuals and organisations sharing
similar values and goals and who identify a purpose in coming
together. Sometimes networks draw organisations and
individuals from the same geographical area. Networks often
facilitate people working together to grow a shared interest.
Advocacy by children themselves can promote their resilience
and have a very powerful effect on the children and those to
whom they are advocating. For example, some children’s and
youth organisations have organised marches, submissions to
government departments, posters, community drama and
presentations to leaders.
Activity 6:
Children’s advocacy movements
Try bringing together a group of children or youth
affected by illness in a community where you are
working. Let them work together on one of these issues
that you feel may be relevant:
• What would we like to say to other children in our
school about children affected by illness?
• What would we like to say to our neighbours about
our family situation?
• What would we like to say to our community
leaders and government about how to help children
affected by illness in their families?
Ask the children or youth to design something that will
communicate this message in a helpful way. They could
create a play, a song or a dance, write a letter, write
a newspaper article, make a speech, design a poster,
organize a march or find some other locally appropriate
way to communicate their message.
34
Specialist referrals
Try to find out which other organisations or government
services exist to deal with these types of specialised needs of
children in your care:

Specialised needs Possible types of organisations

Home based care organisations, trusted staff at a local clinic or hospital, NGOs focusing on
Children with specialised health care needs like needing access to anti-retroviral treatment
health care

NGOs or CBOs specialising in counselling, University Psychology or Nursing Departments,

Children who are sick and need help in processing their responses to treatment
psychologists and nurses in private practice

Vegetable gardening or agricultural support organisations, feeding schemes, government

Children who need nutritional support
departments who provide food parcels

NGOs or CBOs involved in accessing social grants or income generating projects, government
Children who are affected by poverty
departments responsible for social welfare

NGOs or CBOs specialising in counselling, University Psychology or Social Work

Children who have lost their parents or someone they care about
Departments, psychologists and social workers in private practice

NGOs or CBOs specialising in counselling, University Psychology or Social Work

Children who have been abused Departments, psychologists and social workers in private practice, government departments
like police, child protection units, welfare etc

Children living with parents who abuse substances like alcohol or drugs NGOs or CBOs specialising in substance abuse, government departments like social welfare

NGOs or CBOs specialising in educational support, or government services in the

Children with learning difficulties
Department of Education

Caregivers who need help with getting legal documents like birth certificates, or who need
NGOs or CBOs specialising in documentation or family mediation.
help applying for social welfare grants

Caregivers who need legal support, for example with inheritance laws Legal support organisations or lawyers who are willing to assist in certain cases free of charge.

35
It is really helpful to develop relationships with particular
people who are effective and reliable in each referral partner
organisation. Try to ask around about who is a trustworthy
person and try to get to know this person and how she or
he works. This means that when you need assistance with
a particular child or family, you are able to get immediate
assistance and ongoing follow-up information. Where possible,
try to support that person’s other work, like attending some
meetings, so that you are not only making contact when you
need urgent assistance.
Networks
Try to find relevant networks or coalitions of different
organisations supporting children’s needs. For example, you
may be able to join a network of other HBC specialists.
There are also well-established networks of psychosocial
support organisations in many parts of the world. Being
part of a network helps you to stay in touch with the latest
developments in the HBC and PSS sector. It also offers moral
support and encouragement to be with other people involved
in similar work.

Finding out about organisations and Start your own network!

networks in your area
REPSSI is a regional psychosocial support initiative in
Sub-Saharan Africa. REPSSI has a network of partners
specialising in psychosocial support. You can contact
your regional REPSSI coordinator to find out more about
the organizations working in your region. You will find
updated contact details on www.repssi.org.
Activity 7:
Exploring your networking partners
Try to complete the table on page 35 with the actual
names of organisations and contact people in your
area. Try to include the actual names of people you
trust to make it easier to contact that organization or
department. Make a copy of the final table available to
everyone.
If you find that there are no relevant ECD or PSS
networks in your area, consider starting your own.
The Children in Distress (CINDI) Network has
developed a Networking Toolkit to help you in this
process. You can download this practical guide free of
charge from www.cindi.org.

36
 8 Getting started with PSS mainstreaming
in your organisation
If you are inspired to improve the focus of your organization
on the psychosocial wellbeing of children and their caregivers,
this section aims to help you to develop a step-by-step plan. Activity 8:
Discussing PSS in your organisations
Step 1: Discussing PSS in your
organisation In working groups of between 4-5 people, brainstorm and discuss the following questions:
A good starting point for mainstreaming PSS into your • Of what value would it be to our beneficiaries to offer PSS?
organisation, is to engage your colleagues in why and how PSS • What do we want to achieve by taking on PSS activities?
could be included in your HBC programme activities. You can • Are we already offering PSS in the HBC programme? If so what kind of support is being offered? Is the PSS separate
plan to repeat this exercise with different groups within your from the purely HBC activities or is it that you do HBC activities in a sensitive and PSS-supportive way?
organisation such as the board, management team and with • If, not are there areas where we can introduce PSS activities?
field staff and volunteers. • What are we already doing well in our HBC programme that our PSS activities can build on?
• Do we need additional skills or resources to do this?
Try to focus on what your organisation is already doing well, • How will we “take this on” within our existing work?
rather than introducing this as something completely new. You
may also use activities 1 and 2 in this guide to support your
discussion. The case study on page 19 may also assist.

37
Step 2: Develop a PSS mainstreaming
plan for your organisation
Once you have generated some ideas about how your
organisation would like to mainstream PSS, draw up a
vision of how your organisation would look once it has fully
mainstreamed PSS into all aspects of its functioning. Once you
have a clear vision, break this down into manageable steps and
come up with a concrete plan of action. Include details about
who will do what and when to mainstream PSS.
Step 3: Developing your skills in
psychosocial support
Home-based care work has become a highly respected
community health care function. Whereas some years
ago volunteers only went for basic HBC training, many
organisations are now realising the need to develop HBC
workers professionally. They see the value in developing a
comprehensive set of skills that enables home based care
workers to be more effective and professional in their work.
This not only leads to better services for communities affected
by illness, but contributes towards the reputation of the
work, while creating career paths towards increasing skills and
professionalisation.
A helpful way to enhance your mainstreaming of PSS is to offer
1: List adapted from the Soul City Guide Schools as Nodes of Care and Support
specialised training to some of your staff. Most experienced
home based care workers and managers appreciate the
opportunity to learn more about PSS because they say that
it enhances their work. Much of the training in PSS is also
interesting and applicable to our own lives, while encouraging
one’s own personal and social development.
Raising awareness about PSS
A good starting point is to facilitate a general PSS awareness
raising workshop with all the staff of your HBC programme.
This allows everyone to engage in the topic and to develop a
basic understanding of the principles of PSS. You can either run
this training yourself using this guide, or ask a PSS specialist to
come in and facilitate the workshop. Try to choose someone
who you know has extensive relevant experience in the
practical work of HBC and PSS and who will be able to facilitate
the workshop in an accessible way, rather than someone who is
selected because of their qualifications. Sometimes you can put
people off PSS by running a workshop that seems out of touch
with the realities of the work on the ground! It may be better to
start with the real difficulties and successes that people in your
programme are facing and to gradually introduce PSS concepts
from that point, rather than starting with fancy jargon or theory.
You can use some of the activities outlined throughout their
guide to run such a workshop.
38
Selecting a psychosocial support champion
It may be helpful to select one or two people in your
organisation who are particularly interested and motivated
to learn more about PSS. Such a person should be trusted by
other colleagues, as he or she may become a resource person
for the organisation. He or she may eventually train and
mentor others in their PSS focus.
Here are some recommended qualities of a helpful PSS
champion1:
• Passionate about helping children and caregivers
• Good listening and communication skills
• A leader who can motivate others to get involved
• Strong and courageous
• Understands how to work ethically
• Good at starting a task and seeing it through to the end
• Able to accept feedback from others
• Good at making decisions, problem solving, prioritising
and planning
• A person who works from the heart
• Consistent in what they say and do
• A person who perseveres to get things done.
• A person who is trusted by other people and children

Activity 8:
Selecting a PSS champion in your
organisation
Together with others in your organisation, take time out
to explore the different interests that people in your
organization have. You may simply ask each person to
respond to these questions:
• What aspects of your work do you really enjoy,
which inspire you in your work?
• What special interests do you have that you would
love to explore in future in terms of your role in the
organisation?
Specialised training in psychosocial support
REPSSI has a range of specialised materials and training courses
for people wishing to increase their knowledge about PSS.
You could either send some of your programme staff on the
courses, or arrange to host a course together with other
organisations in your region.
Manual / Course
Children at Risk Certificate
Introduction to Mainstreaming
Psychosocial Care and Support
Journey of Life Manuals
Mainstreaming Psychosocial
Support into Emergency and
post-conflict Settings
Psychosocial Care and Support
for Young Children and Infants
in the Time of HIV and AIDS: A
Resource
Weaving Hope for Our Children
39
Focus
This course covers human rights-based
approaches to working with children,
and includes modules on child care and
support, community development and
programming.
A facilitator’s manual to promote skills
development in PSS. It covers a wide range
of topics including working with families
and communities, dealing with stigma and
discrimination, child abuse etc.
This is a series of 3 manuals containing a
facilitator’s guide, action workshops and
picture codes.
This draft guideline sets out the context in
which PSS mainstreaming may be used.
This manual provides comprehensive
guidelines for psychosocial support work
with children.
Its purpose is to build capacity in the
home-based care volunteer to care
and support children with an increased
awareness and understanding of issues of
psychosocial concern.
Source and Use
Developed by REPSSI in partnership
with UNICEF, this comprehensive course
is suitable for fieldworkers and project
managers working with children, families
and communities affected by conflict,
displacement, poverty and HIV and AIDS.
This trainers’ manual was developed by
REPSSI and may be used in developing PSS
trainers.
The manuals were developed by REPSSI
and may be used with people wishing to
learn to facilitate the Journey of Life.
Developed by REPSSI, this tool may assist
organisations working in the conflict sector
wishing to mainstream PSS into their work.
Developed by REPSSI the manual is
valuable to anyone wishing to learn more
about psychosocial support work with
children.
This manual is written for community
home-based care volunteers who are
committed to provide appropriate
psychosocial care and support for children
during everyday home-based care service.

Requesting PSS training
Contact your Sub-Regional REPSSI Manager to ask about
specialized PSS training in your area. You can get the
contact details from www.repssi.org.
You may also be able to approach other NGOs and specialists
in your area to received training on specific topics such as:
• A general introduction to PSS
• Communicating effectively with children
• Supporting children affected by loss
• Resilience: the ability to bend and not to break
• Supporting children affected by abuse or trauma
• Child participation methods
• Child rights and child protection
• Using play to enhance PSS
Step 4: Introducing psychosocial support
materials and tools Children at Risk Certificate
There are a range of accessible and relevant written materials Contact the African Centre for Childhood by email at
which may be read by practitioners wishing to increase their acc@phelemanga.co.za
knowledge and skills around PSS. A good starting point is to
read the REPSSI handbook: “Psychosocial care and support for
young children and infants in the time of HIV and AIDS.”
The table on pages 41-43 provides a simple introduction to
eleven PSS tools. All of these tools are available at REPSSI and
you can visit their website on www.repssi.org to find out
more. For the IFRC documents go to www.ifrc.org

REPSSI and UNICEF recently launched a distance learning

certificate course called “Children at Risk”. This is a formal
qualification in working with children affected by HIV and
AIDS, poverty, conflict and displacement. It is currently being
administered by the African Centre for Childhood.

40
 Tool Focus
Body Maps have been used to help children and adults
Body Maps
describe their health and responses to medication
Tracing books are wellness journals based on the body
map exercises. It is a bio-medical psychosocial tool that
Tracing Books may be used to help patients and caregivers gain a sense of
empowerment over illness, treatment literacy, adherence,
disclosure and communication
Hero Books lead groups of children through a process in
which the child is invited to be the author, main character
and editor of a book designed to help them to set goals
and give them power over a specific challenge in their life.
Children are led through a series of drawing exercises and
Hero Books
autobiographical story telling designed to help them with the
mastery over a specific problem which might be behavioural,
social or emotional. When the book is completed the child
has identified strategies to solve and deal with problems and
proved their hero-survival-resilient abilities.
This is a community mobilisation tool to enhance community
Journey of Life support for children. It uses drama, art, songs and discussion to
develop new skills.
41
Use
Used in group settings it can be a very powerful method to
address issues arising in relation to being HIVpostive
This tool may be used with adults or children directly affected
by illness. It may also be used with their caregivers and
medical support people. By making and sharing these records,
important aspects of physical and psychosocial wellbeing and
challenges can be communicated
This tool may be used with children and youth living in
situations of conflict or affected by loss such as death of
parents and caregivers.
It can also be used with adults such as HBC volunteers as
part of a care-for-the-carers strategy to encourage feelings
that they are valued and respected and that their work is
important, or as a way to support grandmothers taking care of
orphaned children
It can also be useful to train teachers on hero work which can
help them to identify vulnerability
The tool may be used with caregivers and community based
structures. It may be used with people with varying levels of
education.
It aims to increase the awareness of communities in
understanding the needs of children and how to support them
continued on page 41
 Tool
Memory Books and Memory Boxes
Kids Clubs manual
Mobilising Children and Youth into their own Child-
and Youth-led organisations
Tree of Life
Focus Use
Memory work is an important tool that can be used to
support parents to communicate with their children. The
parent can bring the child into the process of making the
memory book and plan together with them for the future. It Memory books may be used with parents and children facing
also gives the children an opportunity to ask questions about loss or affected by the loss of someone close to them. It
their parent’s illness and to be involved in discussions about can also be used with grandparents/guardians to help the
who will take care of them if their parent dies. Parents can child understand the past after the parents have died and to
be encouraged to write wills and appoint a guardian for their encourage a sense of belonging and identity.
children in the event of their death
It can include life stories of parents and ancestors, letters,
photographs and drawings.
The manual is designed to train Kids Clubs leaders in
The concept of Kids Clubs borrows heavily from the thinking
starting and managing Kids Clubs. The training seeks to help
behind traditional children’s organised groups and seeks to
participants understand that Kids Clubs are a link in the chain
enhance this thinking by exploring the potential that clubs have
of community and family day-to-day care and support for
for enhancing children’s psychosocial wellbeing
children
Child-led associations can develop social awareness and
Interventions designed to improve the wellbeing of children
the organisational skills of children. They also empower
outside the school system, are typically able to reach only
children by giving them a voice in their own affairs and can be
relatively small numbers of children. By mobilising children into
especially powerful in advocacy efforts. They are important for
their own child- and youth-led organisations, it is possible to
developing the personal and interpersonal (psychosocial) skills
reach much higher numbers of children
of marginalised children
Tree of Life may be used with children, youth and adults who
have been through difficult experiences. It does not “force
This is a story-telling tool for helping adults and children who
or put pressure” on children who have experienced loss
have experienced hardships in their lives to step into stories of
to talk about this loss, but rather invites them to talk about
hope, celebrating life, the relationships and gifts that they have.
lost connections if they want to and thus has important
applications as a bereavement tool.
continued on page 43
42
 Tool
Mainstreaming Psychosocial care and support within
paediatric HIV and AIDS treatment
Psychosocial Care and Support Mainstreaming
Guidelines
Weaving Hope for our Children
Other useful tools include:
HIV Prevention, Treatment, Care and Support training
package for community volunteers – IFRC, SAfAIDS
and WHO
Orphans and other children made vulnerable by HIV
and AIDS – Principles and operational guidelines for
programming IFRC
Positive Development- IFRC/Health Link/ UNAIDS
Focus
Provides information about PSS in paediatric HIV and AIDS
treatment
Explains the concept of mainstreaming PSS and describes
methods and tools being used in PSS.
Demonstrates how home-based care can be an entry point
for enhancing psychosocial care and support for children
affected by HIV and AIDS
The package is a set of eight generic training modules to
prepare and empower community volunteers and engage
them in the movement towards universal access to HIV
prevention, treatment, care and support
Provides practical direction and step by step guidelines on
setting up a programme to support orphans and vulnerable
children
The manual was developed to assist people with HIV to
become involved, organised and allow their voices to be heard
loud and clear
43
Use
The manual is designed to assist health care workers or others
working with children and the caregivers of children to look at
paediatric HIV and AIDS treatment through a PSS tinted lens.
Provides practical ideas and user-friendly guidelines about how
to offer PSS to children and their caregivers
Assess the role of PSS in your organisation. Strengthen PSS in
your programming
The manual aims to build capacity in home-based care
volunteers to care and support children with an increased
awareness and understanding of issues of psychosocial
concern. These issues include supporting children who have a
caring responsibility, facilitating disclosure of HIV status, illness
and death to children and supporting grieving children
Adherence
Community based counselling
Nutrition
Palliative care
Caring for Carers
Practical advice on issues such as consulting with the
community, becoming good advocates for children, working
to reduce stigma and discrimination, working with the
whole family, helping child-headed households, providing
psychological and social support, working with schools etc
Practical advice on setting up a support group and self help
support and action including getting the group going, working
together, planning your action, assessing resources and
communication skills
Step 5: Caring for the carers HBC before
Care for the carers – that is the HBC workers - is often a PSS focus
neglected. They too need psychological support. This was The HBC worker feels
made clear during a Red Cross training on support for overburdened, is called
vulnerable children, for HBC workers. During the training, on day and night, and
particularly when discussing psychosocial support and memory stretches herself to
become the nurse,
and hero work, some of the volunteers became distressed.
parent, friend, provider -
Not only do they have to cope with the painful situation of
the total support system
their clients, but many of them are also living with HIV and to the household. There
going through the same situation as their clients. Or they is a danger of burnout as
themselves are grandparents taking care of orphans, having a result of stress which
has built up over time. If
seen their own adult children pass away. They requested
not dealt with, this stress
psychosocial support for themselves before they could
can combine to negatively
effectively assist the children in their programmes. It is also impact the volunteer’s
clear that training for HBC workers to enable them to feel mental or physical health,
skilled and empowered to assist children and HBC clients, is a damage relationships and
their ability to support
form of psychosocial support. The volunteers had been doing
PLHIV and their children
their best but feel they can do so much more now that they
effectively
have received training.
HBC with explicit How to increase
PSS materials and tools
PSS focus your PSS focus
The HBC worker engages in
self care, has opportunities for
rest and recreation, works with
a partner wherever possible,
ensures she has opportunities for
In HBC with explicit PSS
debriefing and sets realistic goals. Hero work manual - although
focus the HBC worker
She or he does not try to be hero work is often done with
also pays much more
everything for the household, but children, it can also be done
attention to her own
has a referral network to other with HBC volunteers in order
needs and wellbeing.
PSS and relevant services she to encourage the feeling
HBC volunteers can
can refer to and builds a support that they are valued and
also start their own
network of people she can talk respected and that their work
support group.
openly and honestly to. The is important
HBC workers focus on their own
professional development and
study further to increase their
competence to handle different
situations.

Case Example:
Creating a caring organisation
The Red Cross is involved in a number of
creative initiatives to support the volunteers
in southern Africa including training, choir competitions,
retreats and debriefing from a psychologist.

44
Here are a few simple tips about creating caring organisations
that provide good support for their staff and volunteers:
• Ask the staff and volunteers what they would find most
helpful to reduce their stress.
• Spend time listening to what people are struggling with in
the organisation and in the work. Make sure that issues
like workload and remuneration are fair and regularly
reviewed.
• Create regular opportunities for relaxation and social time
together. Going away to a nice place for a day or for a staff
retreat can be helpful.
• Specific personal feedback and team-building days may
reduce interpersonal stress in the organisation.
• Give lots of positive feedback to one another when
noticing people doing something well. Have special awards
and times of acknowledgement, like an annual luncheon
where all volunteers are celebrated and thanked, or give
certificates and award ceremonies.
• There is a higher risk of burnout when people are working
hard but not seeing the positive results of their work. This
is especially a risk when working with families affected by
chronic and life-threatening illness. Try to create records
and times of reflection that focus on positive achievements
in the home-based care work.
• Make sure that people are balancing their workload to
include less emotionally demanding work, not just visiting
very sick clients. Try to include people in other projects
like community awareness raising or training to balance the
type of work that each person is doing.
• Find people’s strengths and personal interests. Some
people may prefer doing more community awareness
work. Other may be gifted at data collection and
administration. Try to create diverse opportunities for
everyone to explore different aspects of HBC work.
• Encourage people to talk about their work and how it is
impacting on their own wellbeing.
• Encourage group debriefing opportunities, both with and
without professional support, depending on what people
find helpful.
• Make time to acknowledge those who have passed away.
• Having more knowledge and skill about a topic reduces
stress. Have staff development and training days. Try
to create a staff development policy where staff and
volunteers are able to access further training and
education opportunities.
• Help staff and volunteers to set personal goals for their
career and development.
• Try to include HBC worker stipends in your budgets to
ensure that you are not adding to the financial stress of
people living in difficult circumstances.
Step 6: Tracking our progress
Mainstreaming PSS means thinking about every aspect of
your programme and organisation to find creative ways of
addressing the social and emotional wellbeing of all children.
45
There are many ways in which this may be done and there
is no “one size fits all” approach to PSS mainstreaming. But
once you have developed a plan for mainstreaming PSS into
your organisation, it is a good idea to track your progress in
implementing this plan.
Monitoring the plan
Monitoring the plan entails that you routinely check to see
whether you are doing what you put in it. The following
questions will help you track the plan:
• Are you carrying out the activities you set to do?
• Are these activities done within the time-frame you set?
• Are you focused on the objectives you put in the plan?
• Are you achieving the deliverables (outputs, outcomes)?
• Are you spending on your activities within the set budget?
• What are the implementation challenges you are facing?
Decide on strategies to address these challenges?
The routine gathering of information and data in the
mainstreaming process will provide critical information needed
towards evidence-based programming. There is a need to be
always learning and improving the quality of psychosocial care
and support program delivery through tested and proven
interventions that can be scaled up to reach the millions
of orphans and vulnerable children in the region. More
comprehensive psychosocial care and support monitoring
tools can be accessed on the REPSSI website, www.repssi.org.
You may use the table on page 47 to track your mainstreaming
of PSS at different levels of your organisation, or you may
develop your own vision and then monitor the progress every
6 months.
What does a home based care programme look like
after it has mainstreamed psychosocial support?
There is no “on-size-fits-all” model of mainstreaming PSS.
However, the description which follows is an idealised
model of how a programme might look if it has managed to
mainstream PSS into all levels of its functioning.
Staff development
Everyone in the programme understands the importance of
psychosocial support and has been trained to support children
in the families they visit. Resources are allocated to ongoing
training in innovative psychosocial support methods. A focal
point person or psychosocial support champion has been
appointed.
Care of carers
The HBC workers are given regular encouragement and
support to avoid burn-out. Their workload is balanced to
include varied duties. The HBC workers are motivated about
their work and about the children in the families they support.
Relationships with the children
The HBC workers show respect towards children in the
families in their care at all times. They are encouraging towards
the children and try to build their self esteem by focusing on
things that the children are doing well. They try to encourage
good relationships and cooperation between the children.
The HBC workers are aware of difficulties that the children
might be experiencing and try to make space for the children
to talk about their feelings if needed. They appreciate the
power of play in helping young children to process their
experiences and feelings, and allow plenty of time for play,
while supporting children emotionally during times of play.
The HBC workers identify children whose health or wellbeing
may be at risk and try to make sure that the children and
their families get the support they need. They make use of
innovative tools on psychosocial support, such as hero books,
body maps and memory boxes.
The home-based care workers deal sensitively with issues like
children who are taking medication or who require additional
specialised support. Where needed, the HBC programme sets
up or encourages vegetable gardens and feeding programmes
so that children may have access to nutritious meals
Children’s involvement
The children in the HBC programme care about one another
and are encouraged to show respect and empathy for one
another. They are sensitised to the psychosocial needs of
46
other children and do not stigmatise children who have special
needs. The children are consulted regularly about their ideas
about how the programme might function and about how to
support one another.
Caregivers’ involvement
The HBC workers have good relationships with the caregivers
and consult them regularly about their ideas. The programmes
try to build better relationships between the children and their
caregivers. Caregivers are linked to organisations who may
assist them with practical needs such as application for social
grants, starting food gardens or joining with income generating
projects. The HBC programme disseminates information on
HIV and AIDS and other important matters such as child
abuse, positive discipline, child safety, girl-child education etc.
Networking
The HBC programme communicates effectively with
members of the community they support, so as to derive
maximum benefits from them for the benefit of the children.
Members of the local community are encouraged to
donate time and resources to support the programme. The
programme is linked to networks of other HBC programmes
to ensure that they are constantly improving their work. The
HBC programme has relationships with other organisations
and government departments in order to refer children and
families for specialised support.
Policies
Focus Area
The HBC programme has written guidelines about their codes
of conduct, child protection and safety policies.
A programme that has mainstreamed PSS takes special HBC workers’ knowledge,
interest in all children’s needs. An effort is made to change the attitudes and care
attitudes of all members of the community so that whatever
is done is done in the best interests of the child. Such a
programme is a child-friendly one in which children feel cared
for. The focus is on the holistic needs of the child.
Children & youth supporting
Measuring your success one another
It is good to remind yourself of your progress in growing your
focus on PSS as an organisation. Here are some suggested
indicators to help you measure child participation and its
impact in your organisation. They are based on the ideal
Involvement of caregivers
picture given above, of a HBC organisation that has fully
mainstreamed PSS into all levels of functioning.
Specialised support
47
Yes/No/
Questions About PSS Programming
Sometimes
Do all the HBC workers and staff in your programme have a
basic understanding of PSS?
Do the HBC workers in your programme deal with all children
and families in a respectful way that builds their dignity?
Do you have a programme that focuses on care of the HBC
workers in your organisation?
Do you consult children and caregivers about their ideas for
your HBC programme?
Do you have joint sessions and tools with children and youth
to promote respect and empathy towards one another?
Do you have a peer support or mentorship programme?
Do you regularly consult caregivers about their ideas for the
children in your programme?
Do you give feedback to caregivers about their children’s
progress
Do you identify children and caregivers who need additional
specialised support and link them to other organisations?
Do you help families with other needs like access to social
grants, vegetable gardening etc?
Do you link children and families with other community
structures to ensure that they stay connected to the
community?
Is your organization part of a network of HBC or PSS
organisations?
 9 Conclusion
Mainstreaming PSS is not a one-off activity but a process. Once your organisation has successfully mainstreamed PSS into one area
or programme, consider mainstreaming PSS in another sphere or programme. Continue referring to these guidelines and they will
help you in the PSS mainstreaming process.

The responses to HIV and AIDS in home-based care need to incorporate psychosocial matters as this will ensure that children
and adults’ needs are met. These guidelines for mainstreaming PSS in home-based care will set a good platform for government
departments, NGOs and CBOs to mainstream with a common understanding of PSS issues. Programmes and policies must
respond to all the needs and rights of children in an integrated and holistic manner. This will promote sustainable and high quality
responses, bring common understanding, facilitate policy transformation at all levels and strengthen systems of care and support
among organisations.

Should you have need for more information on PSS mainstreaming, contact your nearest REPSSI office and please make use of the
website www.repssi.org.

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10 Appendix 1
REPSSI PSS definitions in different languages
Language Definition(s)
Tororo uganda Ngeyo gimatimere iyi paro kodi - Nyangith pa nyathi makere kodi miyo go gikipiny mago nyalo ora - Kony ma makere kodi gima timere - iyi adundo, nyeri ma go nyalo -
Dhopadhola
dongo kanyachiel gi wadi kanyo - iluwo gima tho gi chik maadhumi pesa ma nintye iyi Adechno kodi. Timi ma’pa jono ma jokuro nyathi.

1. All the processes through which babies and young children are nurtured to grow and develop.
2. Psychosocial care and support is the continuous care and support provided for children to meet their emotional, physical, spiritual, social and cognitive needs through their
English interaction with their surroundings and people helping them.
3. Psychosocial care and support is the process of meeting the physical, intellectual emotional, social and spiritual needs of the child depending on the cultural, political and economic
situation of the community.

1. En kong mosiko ma imiya wahia moho olo dwachigi mag ringruok, chunygi, pachgi ka okalo kuom jogo ma otudoregodo e aluora mar dak gi kod jogo ma knoyo gi kanyakta.
2. En kony mapile pile ma imiyo myithindo mondo okony dwaro mar chuygi, dendgi, yie margi gigo mag ringruok kod pachgi dwaro etudruokgi makinde kakinde e aluora kama gi
Luo
dakie kod ji magi dakgo.
3. En kony ma nyithindo yudo e ndamo ka ko ndamo. Ka konyo dwaro mar chunygi, ringre gi, bedo gi e kanyakla, kaluwora kod timbe gi, siasa, kod yuto mar oganda gi.

1. Tamako ne da ake bada wa ma yara don duba/a same konchiya hankali, abotowa gane, ban gskiya zuchiya da zama du hadiwa chinkin mutane ta harduwa da mutane masu bada
tameko a ugwa ku a famako na, nu ugaba ne ba we za’a fara se a siya ba.
Hausa
2. Tamako ne de ake bada wa ma yara don duba konchiya hankali aboboa gane, ban gaskiya, zuchiya da zama haduw chikim mutane ta haduwa da mutane masu bada taimako a
ungwa, kuma taimabu ne ha chinga ba ne, ba wai za’a fara a seya ba.

1. Ni huduma endelevu ilitotewayo kwa watoto ili kuwasa idia kimaono, kimwili kiroho kijamii na kiakili/kimawazo kwa kuandaa mazingira yanayowafaa. Kwa ukuasi wao.
Swahili 2. Namna ya kumsaidia mtoto kimwili kihisia,kijamii na kiimani katika mazingiva yake kulingana na hali ya utamaduni, siasa na uchumi wa jamii.
3. Ni mbinu zote zinatumika ambazo mtoto hupewa ili kukuwa na kuendelea ipasavyo.

Luganda Okubudabuala kwekukya musa obwago bwan abana gatu yitira mmubantu ne loyetoronde omwana gatumu yamba mu byo mubiri ekoragana nabolala okutyakafonda nedowooza

Dholuo Kony duto mimio nyathi mondo odongi e ngima makare.

Samburu Nkoito na keibungakini nkerai pe eret te lbulunye e akunoto enye.

Ukunakekelwa nokubhekelwa kwabantwana nezingane ukuhlangabezana nazo zonke izidingo zabo, lokhu kwenziwa ngokusebenzisana ngokubambisana nendawo abakuyo, kanye
isiZulu
nalabobantu ababasizayo.

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 REPSSI are the copyright holders of “Mainstreaming Psychosocial Care and into Home Based Care Programmes.”
Along with everyone who has helped to produce this manual, we want to share it freely and widely. We hope that
you will join us in sharing this method in a respectful and productive way. To encourage this kind of sharing we have
decided to extend the copyright of this manual using the Creative Commons Attribution-Noncommercial 3.0 License
so that it can reach as many people as possible. The terms of this license are:

You Are Free :

To Share – to copy, distribute and transmit this manual.

Under the following conditions

Attribution. You must attribute this manual to REPSSI with the words: “Mainstreaming Psychosocial Care and into Home Based Care Programmes” was originally
authored by REPSSI. Copyright © REPSSI’.

Non-commercial. You may not use “Mainstreaming Psychosocial Care and into Home Based Care Programmes” for any commercial purpose whatsoever.

Derivative Works.
• We encourage organisations to translate this manual into other languages, and / or print additional large quantities for distribution and use, but request
that they contact us first. We are prepared to make high-resolution files freely available for this purpose.
• Similarly we understand that the manual might have to be adapted for use in different contexts. However, for quality control purposes, and to ensure
that no harm is done, we ask you to please be in contact with us around any changes you might want to make.
• We hope you will be in touch with any questions, comments, suggestions and stories. REPSSI, PO Box 1669, Randburg, 2125, South Africa,
tel +27 11 998 5820, email, knowledge@repssi.org

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978-0-9814416-5-8 www.repssi.org
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