Christmas Meeting: From the Family of Nazareth to the Family of the CLM

LMC PortugalThe Christmas meeting of the Comboni Lay Missionaries took place on December 16 and 17 in Viseu, at the Comboni Missionaries’ house. The theme was “From the Family of Nazareth to the Family of the CLM.” Several CLM attended together with those in formation. It was a meeting marked by joy and by a family atmosphere, a Comboni family and a CLM family. It was a family gathered around a single ideal – namely, Christ – and the same Comboni charism.

On Saturday morning, the CLM Sandra Fagundez gave a presentation on San Daniel Comboni and the movement. Following that, we played a game that gave us the opportunity to discover more about the Comboni Family, the meaning of Christmas, Christmas in mission… as we continued reflecting and praying on the different meditation points. It was an experience of dialogue, of sharing that enriched us and brought into focus in prayer realities distant from our eyes and the entire Comboni family.

The afternoon brought us another surprise. By groups, we had the opportunity to: talk about Christmas in mission and their life experience with the elderly Comboni Missionaries who live in the house of Viseu; converse with the Comboni Missionary Sisters at their home on what characterize the various Christmas celebrations they spent in mission; and, at the family home of the CLM Marisa Almeida, to talk and share with a family which is also part of the CLM family, because with us it shares and lives the dedication and affection to mission. It was an afternoon when we were questioned and challenged by the many witnesses of lives fully lived and dedicated to mission.

LMC PortugalAfter prayer and supper, we had a party where, once more, we shared fun, laughter, jokes and music (and where Fr. Felix delighted us with his accordion). We also exchanged gifts! Once again, it was a time of unity, during this happy and genuine time together, with the CLM family and the Comboni family at large.

On Sunday, The CLM Susana Vilas Boas gave a presentation on the theme of “From the Family of Nazareth to the CLM family” starting with a reflection and ending with a sharing. From the morning session I remember the idea of journey. The CLM is on a journey, as Comboni would say, with their eyes fixed on Christ – because only this way does the journey have meaning. This is in order to follow the example of the family of Nazareth: the unity of Mary and Joseph, its humble service to Jesus, its desire to fulfill the will of God and the total dedication to his will must be the example for the CLM family, so that it may fulfill the dream that God has for it, and continue on a journey of growth in order to serve in mission according to the style of St. Daniel Comboni.

The Christmas meeting ended with the Eucharist with Fr. Francisco Medeiros as the main celebrant and with the joy of having with us at lunch the family of the CLM Neuza Francisco.

This is the word I was looking for to sum up the Christmas meeting of the CLM: family. In prayer, sharing, being together, listening, this meeting has awakened in each one of us the notion that we belong to something bigger than ourselves, a spiritual family that accepts us and challenges to improve, to do and live our mission in the style of Comboni, with our eyes fixed on Christ, passionate about Him and about people.

LMC Portugal
Filipe Oliveira

Spiritual dryness

espiritualidadI whole heartedly appreciate our colleagues who consistently bring us encouraging words to give us spiritual enlightenment through their own missionary experiences from which we are learning a lot from what they share with us here in our blog.

I humbly would like to share my own experience in spirituality from my journey in trying to find where our Lord is but I have not found him face to face but I know in faith he is with me and all of us in doing the work that we do. Without God we would not have reached where we are through the intercession of our beloved founder, St. Daniel Comboni in whose steps we try to follow which is like moving in a bush full of thorns. These are from my notes of some retreats and workshops I attended and I humbly pray those who will read it may find something to learn to share with the people they work within our missionary life. It may benefit you as a person or help to learn to facilitate some talks with the parishioners or the young people we work and stay with. This is not a complete literature to rely on but it may make you think more to discover the will of God in you and me.

Spiritual dryness is said to be a state of being distressed, hopelessness, and unworthiness, unsatisfied, discouraged in our spiritual life and duties. This can occur to anyone and we find from actively participating in prayer life, we tend to realise we resist going for morning prayers or saying it personally, reading spiritual books, community prayers become a very big burden. And we find no reason for what it is that we face but there is no reason we can explain for our state. St. Paul calls them as thorns in his flesh and no matter how long or how short we are in our missionary vocation, they are sure to come like day and night, as they say no matter how long or short a night is, the day is sure to come.

Let us look at some but not exclusive Causes of spiritual dryness

  1. Sin that we refuse to admit and uncover, this can be consciously or unconsciously in our life. If we do not have enough time to meditate on our life and services, it will be very difficult to discover sins we committed but have not come to our mind at the time of confession. Some great thinker said a life without daily reflection is not worth living. Mathew 13:12 tells us in such moments to always aspire for more of what we need from God so that God will bless us more with his gracious gifts. The more we meditate on our life and try to find out our wrongs, and surrender our all to do the will of God, the more he will show us areas in our life that we need to be delivered from.
  2. Over-feeding and over straining to some people. This especially comes during retreats of either group or individual, Bible camps where we learn about the Bible and learn how to live it in our lives, Church festivities like Christmas, Lent, Easter, and Pentecost in which we always prepare to get the most in all that we wanted. After such moments, our Spiritual Fathers always encourage us to prepare for this spiritual dryness that can make us to drift away from our main focus on Jesus and our beloved Mother Mary.
  3. When we have been blessed with God’s word from what we read, may be when we find our prayer requests have been answered. We are in very good perfect life with the family and the rest of people in our life. In our Parishes, where we do our missionary work, we have very excellent work life with no challenges and other associates or team work we work with. If we do not constantly pray for guidance of God and ask him to let us prepare for the worst in our spiritual life, we may find we easily fall into a state of nothingness and despair.
  4. Taking unlimited amount of spiritual food for example people belonging to more than 3 weekly Bible studies, prayer group may suffer so much but personally with our missionary assignments where we are two or even one, it may be very difficult to have a constant spiritual nourishment and we may put our self in a deep spiritual nourishment once and it will take another very long time to have a similar nourishment and so we can be an easy target of spiritual dryness
  5. Over-feeding spiritually may damage our spiritual life and o spiritual dryness and so we are advised to take what is appropriate but consistently searching to get more, as they say we need to thirst for more and more in our life to discover the Lord.
  6. Disregard of our body just as joy affects heart and flesh. We must be conscious of our health, may be working for service or an income for the family but we need to know when we are tired and we can do more. It becomes challenging when we are to meet deadlines of what we do and we may be taken deep into work, thereby depriving our body of rest, a tired body cannot concentrate on prayers. That is why Jesus in his mission, when he did a wonderful work, performed miracles, he would tell his apostles to find some place to rest, he would be alone in a state of prayer and contemplation when he is preparing for a difficult task. I strongly believe if we give our bodies rest and give some time to enjoy the nature God has given us to help us like flowers, trees, water, animals and the rest for us to live better, our spiritual journey will be easy. Psalms 84:2 brings us how to thirst for the word of God and to be in his presence and in his temple. We can never have this yearning when our body and mind is so tired.
  7. A sick mind can be a cause of a sick body. We are different individuals who grew from different family backgrounds and so when we come to live together in a community, conflicts are bound to arise by all means. If we claim not to pay attention to diverging views and learn to tolerate to live with them, it will affect our mind which will never find it easy to concentrate on prayers. One of the spiritual writers put it that Jesus advises us to learn to live with Judases in our life because he knew Judas Iscariot was going to betray him but he tolerated and lived with him for three years. We may say we are not Jesus the divine to tolerate Judases but St. Daniel Comboni had the worst share of this as well when too much allegations were put on him; he does not pray, he does not use the money for the purposes it was meant to be and so on, he personally did not have peace of mind with the clerics he was with, no wonder why he died in the hands of the Lay people who were by his bed side at that time and so I believe conflicts are good but if we cannot resolve them amicably like followers of Jesus, it will affect out prayer life and so spiritual dryness is inevitable in our life. Jesus brings this out very well in the teaching about divorce Matthew  19:1-9 and there are always people who will contradict us in our work and what we teach but remembering how he handled them is the way out to live with people who are always controversial in our missionary work in our communities or where we work
  8. Loss of balance. Our conversion to follow Jesus Christ does not relieve us from observing the order of creation in which we are part. We have friends we need to meet, we have to attend to our natural body desires of intimacy in a spirit of chastity in religious or marriage life and we need to acknowledge that we are weak and immoral and we need to surrender these feelings to Jesus to work. We have our families that need our company, we need to have recreation as St. Francis of Sales put in his book Treatise on the Love of God and The Devout Life that what our body demands, we have to do it even if it means going to dance but it has to be in a way if Jesus comes to you right there, he should judge you rightly. King Solomon tells us to learn to regulate our body according to reason.

Lack of balance between work and rest in a long run leads to spiritual dryness as well explained in Genesis 2:2-3 where God rested after working. God, in his divine nature did this, what about us the mortal ones who are victims of sin all the times of our life in this world of sin? Many sins we commit I believe happen so when we are tired and exhausted from all that we do and so we are so irritated that we just say anything that comes to our mind without reflecting on what we are to say or have just said, we tend to pass our judgments emotionally (irrationally) rather than rationally something we may regret later.

Lessons to learn from spiritual dryness

Therefore spiritual dryness should not be taken as a calamity. In John 11:4 Jesus said the death of Lazarus was to bring the glory to God. Personally I have been through some hard moments of life challenges but later on I would thank God that it went that way, it has brought me so closer to him. Therefore;

  • Through spiritual dryness, we can grow in our spiritual journey, we tend to surrender our all to God and say with our Beloved Mother Mary; Lord, let your will be done in this not mine, if it has come from you, make me strong enough to pass through this but do not remove it away from me. St. Augustine said “he who created you without yourself will not save you without yourself” and so we need to be fully present to overcome our spiritual dryness with prayer and fasting
  • People who were very close to God experienced the same like our Lord Jesus wept in the garden of Gethsemane before he handed himself to be tortured and killed. His words Father, remove this from me, but let it be you not I would have it… when he was scourged, he beautifully said, my heart is ready or God, my heart is ready….and these are the very words we can learn to have in our most challenging moments in our life, Moses and Elijah also experienced spiritual dryness and when we read about them, we find our they were so humble to let the will of God be in their lives through the hard moments they were going through, we can always ask ourselves how often we allow the will of God to happen to us than defending our pride to explain why the other person is wrong and I am the one right. Jesus did not defend his heavenly Kingship when Pilate asked him….are you the king? He said it is you who said it…..why then should we find it very hard to accept that we are wrong and find all possible reasons to defend our actions??? The answer could simply be got from Herbert Cardinal Vaughan’s book Humility of Heart that is the Pride in us that we are better than others and we are so much self-centered in all our deeds. St. Thomas said acquired humility is in a certain sense the greatest good. From Job 4:2 we learn that God sends us some moments of dryness to prove our worth as his faithful followers and Psalms 22:15 tells us the path followed by the evil is always wide with no challenges and is smooth as compared to path leading to eternal happiness which is full of thorns and holes to walk on. Jesus said whoever wants to follow me must take his cross and follow him. To me this is not the wooden or metallic cross that we make but the challenges that we bear in our daily life as we keep our focus on him but keeping touch with the reality we live on ground.
  • After every mountain, there is a valley and this is the journey to eternity and it is like watching a train or lorry fully loaded climbing a mountain with too much smoke and at a very slow speed and the driver keeps his speed because he knows there is a slopping side where all will be fine and when he reaches another mountain he prepares for that and this should be our journey in our work, always to be prepared for mountains and crosses in our life.
  • Do not despair when spiritual dryness comes, your blessings are at hand, only if you persist and do not give up your focus on the Lord Jesus and live in a spirit of humility knowing all is from God to make you to know him better. Daniel and his friends preferred to be burnt in the heart of fire, they did not ask God to save them from the flame but said the will of God be done. At the end they triumphed in this with God sending his Angel to save them.

How to overcome spiritual dryness

  • Try to live a life full of forgiveness and tolerance no matter how hard it may sound to be and how innocent you may be in all the challenges you are going through. Our Lord Jesus said …..father forgive them, for they do not know what they are doing…the same word St. Maria Gorrett said to her murderer that God should forgive him but he should turn to learn to do good….it needs a real divine intervention to forgive as human beings. We can say I forgive you but I will not forget. Therefore forgiveness takes time and effort through prayer. Etty Huillesum said “inside me there is a very deep spring and in this spring is God. Sometimes I achieve it but more often it is covered by stones and sand, at that moment God is buried, must be unearthed again” and this is done only and only when we pray and learn to forgive.
  • Confession and renewed assurance of forgiveness and this comes with the necessity of having a Spiritual Director who can guide us in all these challenges we go through and they always hold our hand in the journey which is full of thorns and holes. Whoever we have as our spiritual director is also a human being bound to err and when we witness this, it does not stop their role of being our spiritual directors to whom we can always run in case we are in turmoil of spiritual dryness.
  • Make daily examination of consciousness and discover the imperfections. Accuse yourself to Jesus for the sins you have committed for each day, eliminate self-love and become like little children as Jesus says. Consider humility under the aspects of your relationship with God and your neighbor. Always ask yourself what did you do this day, how did you do it, what have you omitted to do. Always insist on spiritual directors. Great spiritual writers gave us two things: two things of which one must never complain, clothes or food, two prayers we should frequently repeat, my God, let me neither be curious nor talkative and two actions for which we must be always ready to have Holy Communion all the time and to die. Let us all have an effort to read the very excellent book written by St. Alphonsus Maria de Liguori Preparation for Death (free download from search catholicfreebooks click on the second option, it brings a very beautiful cathedral windows and pictures of saints, you can download as many books as you can) or any other author and it teaches us how to live a real committed life to go to heaven as we can die anytime anywhere. When death comes whether prepared or not how will it find you and me
  • We need to live a life of responsibility and discipline in both private and public life at all times and in all places we go to. Always we need to ask ourselves what Jesus would like me to do. Spiritual writers tell us to live each day the way it comes and when we want to make resolutions, they should be made each day not for life, because we can control what we do at present not tomorrow which we are not sure whether we shall reach and also yesterday is gone and we leave it to the mercy of God. Therefore every day we need to live better as they say perfection is attained now at present when you are there doing all that you can.
  • We depend too much on second hand sermons; learning from others is very good but not enough for our constant spiritual growth. We need to dig out firsthand information on spiritual food for ourselves through personal studies, reading spiritual books, attending personal and group retreats, making every encounter we make a moment of prayer and to learn to appreciate Jesus for all the wonders he does for us.
  • All crosses and adversities will only serve to strengthen the spirit of the members who are faithful to this holy task and determined to put the mission on the road of certain prosperity, because the works of God have always been at the foot of Calvary and must be like Jesus Christ went through the process of passion and death in order to reach the Resurrection. (St. Daniel Comboni message MDC 238) and Having been made sharers in the passion of Jesus Christ, we have a greater desire than ever to sacrifice our life for Christ and for his mission (St. Daniel Comboni message MDC 69) with these beautiful words from our founder, let us learn to discover Jesus from all the spiritual dryness we shall always get and be ready to fulfill our part in the sacrifice for the kingdom of God for which we  are striving to do our part.

Matters of spirituality are never exhaustively discussed and are never easily understood but I hope with these few, it can lead us to read more and search more from different sources on how well we can do all this in our life. With our work, sometimes we may not have sufficient time to pray but learning to pray where we work, communicating to God in our work may help us to pray.

Disagreements are always there and when they come, let them lead us to pray more through the intersession of our Beloved Mother Mary, St. Daniel Comboni and our patron saints.

With these few words, let us keep the candle burning in our words and deeds while asking God to be with us all the time of our lives. And by asking the lord to make us live a committed Lay Missionary life with love and dedication to the most Sacred Heart of Jesus and Immaculate heart of Mary and to strive for something that is worth and very important to live as Comboni family to reach to all in words and actions as we live in peace and harmony. St. Julian of Norwich said the greatest honour we can give the Almighty God is to live gladly because of the knowledge of his love. Love is our Lord’s meaning and we have to do everything for love, God made us, God keeps us and so we need to turn to him all the time of our life.

To God be the Glory

Ezati Eric.

Comboni Lay Missionary. Uganda

Formation Community in Portugal: Experience and illusion

LMC Cristina y TereThe gifts of one person can enrich another.

The time that we spend in community is lived as a period of preparation for mission.

The breaking away from the daily routine, work, sharing with friends, family, the priorities that define us in a consumeristic society, etc. Everything changes in order to arrive at a subsistence society. It is done by making us rethink what in fact are our true priorities and/or necessities.

Remaining always focused on mission with our eyes fixed on Jesus, our community planning begins when we realize the richness we have, the experience of one and the illusion of another, that allow us to overcome the challenges facing us.

Fear, discouragement while learning a language, the insecurity of not being able to answer the expectations and the needs of the mission, difficulties in adapting and all the other thoughts that at times overwhelm us, can be quickly conquered with moments of mutual respect, prayer and sharing.

In our efforts for mutual understanding, laughter follows, painting our hearts in many colors, of love and joy.

Tere and Cristina. International formation community in Portugal.

Witness – Faith and Mission by Inés Gonçalinho

LMC Portugal

Well, how should I start this witness? Words fail me to describe the whirlwind of emotions I felt, and the homesickness that is already pervading my heart. I waited days and even weeks to start writing this witness, at times out of fear, at times out of nostalgia. Each day I spend away from that land, I feel pain, but above all I feel homesick. It is something that come over me without asking to be allowed in, and determines how I feel, up to the point of dictating my dreams when I go to bed. I can’t describe what I lived, shared, loved, and above all what I have received. I loved and still love these folks as if they were family. Sincerely, how could I not? I was adopted and cuddled by all those who crossed my path, even though we were not speaking the same language, but this did not stand in the way of constant signs of love. In one of the visits to the barrio near the mission house I met a woman who immediately invited me to “mata-bichar” (have breakfast with them. When I realized it, I was surrounded by people who were watching me with great kindness trying to teach me their customs. My heart was shaken daily by the hospitality and love I felt, and by how we looked at one another and embraced with passion. I was at home.

I feel and think as I did when I stepped on that land for the first time and I cannot hold back my tears. The excitement to start, to know, to be, to help was such that the following Monday, two days after our arrival, I showed up to work at the ITIC. The night before I had hardly slept because of fear. I was wondering whether I would be able to deal with the kids who would show up in the infirmary to ask for help, whether all that I learned at the university would actually work, and whether I could adapt to the means at hand. There were many “Ifs,” insecurities, but of one thing I was sure, that I would give the best of myself from morning to evening.

I organized papers, reorganized the prescriptions shelves, but above all I dealt with the students in all their needs. I gave myself without fear, I remained after hours in that cubicle within those four walls, and filled my heart. I was always surprised when the students would look for me just to say Hi, to “give me a happy day,” as they would say.

LMC Portugal

The way I connected with those boys was indescribable, as if with a simple gaze we had established a pact of mutual protection. I felt intensely the illnesses and worries of each one, and dealt with each one as if they were the only ones, with all the love I could hold in my breast. Many times, when some of them were sick and had to sleep in the infirmary, it cost me to go home. I couldn’t think of anything else except of ways to make them get better rapidly. Very often I spent afternoons with them, playing games on the cold floor of the infirmary, taking their temperature every 30 minutes, or simply watching them sleep.

Some days were easier than others, but all of them were a constant challenge. Each day He helped me survive and realize that our obstacles only exist in our head. Very often I felt disoriented and knelt before Him, and He spoke to my heart showing me how he would overcome my difficulties.

One of the many situations I lived was the first time I saw the faces of those girls I was going to help in their studies. Each gaze entered my heart so intensely that I will never forget them. They were trying to learn by themselves, without books or anyone explaining things. They were motivated by an indescribable interior strength for wanting to be more, to reach a better future. Each one carried in her eyes stories and experiences that I will never forget, but always with a contagious joy and love.

I had the opportunity to help in the community clinic and there I understood that I belong to those people. I went for too much time avoiding to confront the health situation of the Makua and the pain it would give me. But in the end I rolled up my sleeves and went. I simply went. I covered all the branches, from the HIV patients, to the women patients with still undisclosed diseases, the maternity, the pediatric ward, ending with the TB department. I knew I was placing my health at risk, but I was sure of one thing, He was watching over me, and so I would not let this fear interfere with my helping people.

Endless lines would form at the entrance of the center, the screams of the children filled the corridors, and everyone awaited their turn. At times, language was a barrier in explaining how to take a prescription and the care that was needed, but I always made an effort to convey the message. I thank God who gave me strength daily in order to be able to help those people in need, and because a feeling of powerlessness never took over me.

With each passing day, the ties were growing stronger and my anxiety about returning home was constant. I knew that my place was there, that I belonged to them. This is the family God chose for my mission. And I loved them more every day, so that it was impossible to say good-bye without promising that I would return. With all my heart I am grateful for how they received me and for the love they gave me.

The best of this mission was not only the people I met, the smiles I saw, and the tears I shed, but also how God took over my heart daily without my knowing it. The need to talk daily with Him, was an intrinsic part of my routine, and the kind way He answered me was beyond description. I am sure that, without Him, I could not put up with my weaknesses or avoid my anxieties. How beautiful it was to discover God in this way!

Thank you, Carapira, simply thank you!

LMC PortugalInés Gonçalinho, Faith and Mission

Learning to Love…

LMC PortugalIt was a dream that turned into reality! It all started the first time I listened to the witness of a missionary priest and I marveled at the intensity of his love lived and shared. I was an adolescent and at that time my great wish to be able to love like that was born.

Time went by and I almost saw the dream disappear into my routines, responsibilities and job. But God knows what he is doing and could not possibly let such a rich dream die. He was able to lead me along the right path, on the journey of Faith and Mission that helped me grow closer to him, to know myself more deeply and to realize that I was called to do something more. So that, with a million fears and desires he wanted me to go even farther and lived this month where I could learn and savor a bit of the missionary life.

After the preparation, the gathering of funds and the good-byes, I only accepted that it was real when I saw myself in Nampula. So I got off the plane, picked up my camera to take some pictures and a security guard stopped me. There I discovered that this was not the world I had grown in and to which I was used.

On the journey to Carapira, I realized that I was living a different life. On the paved road, without painted lines and stretched to infinity I had the chance to see the reality of living in Mozambique. From the window I could see the scenery along the way, the little markets where they were selling a bit of everything, many women with their babies on their back and others carrying buckets of water or other things on their head. The red soil, the local trees and the infinite plain with some mountains in the distance completed the scenery. In some areas you could see straw huts and inhabited areas.

We arrived in Carapira and the warm welcome reminded me of my familiar world. The place was rather similar to what I had been imagining.

The first days gave me the opportunity to get to know the place where we would spend most of our time, the houses of the different branches of the Comboni family, and the work they were all doing. Tasks were assigned to the entire Faith and Mission community, mostly related to the Technical Commercial Institute (TCI) of Carapira and with the girls at the Comboni sisters’ boarding school.

We developed our assignments during the course of the month adapting them to the local rhythm of life. Time is relative and there is no hurry, always finding time for a chat whenever we were going from one place to another.

Every day we took part in lauds and vespers held in church together with the Comboni community. At first it was not easy to wake up so early for lauds, but as I entered into the rhythm of life I rarely missed any of the prayers. It was a time to stop and join Him and remember all the reasons that had brought me there.

LMC Portugal

Besides the tasks initially assigned, I had the opportunity to visit a community outside Carapira together with Sr. Eleonora. There I had the chance to “inculturate” myself by eating with the community. I also said the rosary in Makua in a barrio of Carapira and to accompany Sr. Maria José on her visits to the sick. These times gave me the opportunity to get to know a bit the customs and the life of the Makua. They were always happy to hear us use their language, as little as it was.

Marvels happened as time moved on. And each day had a special touch that made me enjoy being there where nothing else mattered. Even though I missed Portugal, the desire to stay was growing with every passing day.

Slowly I was learning more and more, especially with the girls at the boarding. From the first time I met them I was captivated by their smiles, songs and contagious joy. My heart was always full when I was with them! They endeared themselves to me with their simplicity and, even though my job was to teach them and help them in their studies, I felt that I learned from them even more.  They were teaching me Makua words and always had a good laugh when I tried to pronounce them.

When I already was feeling my heart warmed by so much love and I thought it could not get any better, there appeared a little one who wanted to talk to me alone. I confess that I harbored many thoughts and some fears, together with much curiosity. What does she want to tell me? Finally the proper time arrived and the question was very simple and expressed very sweetly: “Would you like to be my friend?” I was unable to react and was speechless. I was not expecting such a small question but loaded with so much feeling. I hugged her and told her that we were already friends without having to ask for it. But this little heart was going to surprise me even more. Even after I tried not to accept it, she came with a gift for me. I know that we have a lot and they have little. How was it possible? It was a small notebook with something she, herself, had written. During the month, the little attentions of this child moved me in a very special manner, turning upside down also my world and my way of thinking about love. After all, it is so simple!

All this helped me see life in a simpler way, stopping to value some of the things I have and reflecting over this love almost wordless but very communicative. This is how God took me into the desert and spoke to my heart…

Mónica Silva (Faith and Mission)

What we need to know about terminal illness in children adolescents (Ugandan experience)

UgandaThere can be no keener revelation of a society’s soul than the way in which it treats its children (Nelson Mandela). This quotation is a wakeup call for the importance we need to attach to children and the young people in the various work that we do including our own homes.

When I look through the many postings on our renowned blog, I realize that many of us work in schools, hospitals or health centres, communities where we have children and adults who are living with terminal illness so commonly; HIV/AIDS or cancer to some extent. For the purpose of this discussion, we shall limit our focus on children. We have very many partial orphans where a child is living with one parent or total orphans where both parents have died. Many of these children are under the care of relatives, good Samaritans and others live on their own no matter how old the elder (care-taker) one is. This brings challenges and many times such children end up being brought up in orphanages or some sick bays where they live with no certain future for themselves. They depend on the care givers who can give them hope and life for the future through education, medical care and all the personal needs. What I am going to share may be applicable in African setting; however, it is applicable in any part of the world where our missionary work is needed.

Many times we volunteers move to our places of assignment when we have high hopes of doing the best we can for these children but we get limited when it comes to medical needs where the medical personnel is not available at that time we need them. This can come into situations; for example, convulsions, when the child is not taking daily medications and when the health of the child is deteriorating rapidly, when the child looks depressed and out of place and among other conditions. Many of these children live with HIV/AIDS and cancer directly if they are infected and indirectly if their beloved parents or siblings are suffering from HIV/AIDS and cancer, epilepsy, sick cell disease, mental retardation, mental sickness like depression leading to drug abuse and many others.

In 1990, 18-year-old American hemophiliac named Ryan White died of an AIDS-related illness. He had been diagnosed with HIV at 11 years. At the time, AIDS was seen as a deeply stigmatized ‘gay disease’. Ryan and his family were regularly subjected to abuse and excluded from community life. Their astounding acceptance, even forgiveness of this treatment was truly humbling. This fact might have happened sometime back but it is still happening now and many children and their families are carrying this burden individually or as a family.

Many of the children get HIV infection from their parents during birth, at breastfeeding, some are infected with direct blood injection by some rude people, others get it through rape, defilement, consented sexual intercourse due to peer pressure and others leave their homes due to domestic violence and come to streets since they have never felt loved in the whole of their lives. So these children have a whole history behind them as concerns their past life and cannot be easily handled without patience and determination.

This always brings about frustration when we see our efforts seem not to yield fruits. However, this is not true as the needs of a terminal sick patient is not only on medicine but on Holistic care where a person is looked at as a whole involving physical needs which include diseases a person suffers from like malaria, tuberculosis, anaemia and many others. Psychologically, the patient is tortured at the breaking of the bad news that he/she has an illness that is not going to get cured and so feelings of uselessness, rejection come up and they no longer see meaning in life. Socially, they become isolated and see no need of being in the company of healthy people with the view that they are not worth their company as their own self esteem goes down completely. Spiritually, they see the hand of God in their sickness, for the crimes they believe they have committed or their parents committed for which God has punished them. Some see God as a distant judge for whom they are not worthy to come so close to him as he is going to send them to hell. This makes them not to fear committing crimes as they are aware that even if they do or not, God will still judge them harshly. Economically, many of them or their parents are out of formal employment or businesses and so the care for the siblings or self-become challenging and in the end others are forced to become beggars on the streets, resort to stealing, hard core criminals, prostitution and lesbianism and many more social evils committed in the society. Some of these children who stay with their parents have never experienced love in their life, are abused by their care givers or even biological parents, teachers, neighbours, strangers and become infected with HIV in the process of such abuses. Such a child will not always be interested in the environment and their school performance drops drastically and they do not perform well even if teachers give special attention to him/her.

Children and adolescents make up the bulk of population in many developing countries with its challenges of parenthood, care and up bringing faced by parents and care givers. Many times we are frustrated of not understanding why the children we care for are not behaving in a good way especially the older children. It is important to understand why some characters develop in children as they grow. My own children including those I take care of sometimes behave in ways that used to make me disappointed but the time when I came across what you are about to read, it made me to understand them.

Adolescents are people between 10 and 19 years of age and Adolescence is a phase of life that is defined differently across cultures.  Other commonly used terms are “youth” or “young people,” which have slightly different definitions. It is confusing and there is no definite age mark for children and adolescents. There are very young children who will show characters of adolescents and there are adolescents who will show characters of children. So who fits where is looked at on individual basis for proper management and care.

Age range (according to WHO)

  • Adolescents 10–19 years
  • Youth 15–24 years
  • Young People 10–24 years

 Key Changes during Adolescence

In Females

  • Development of breasts
  • Appearance of pubic and underarm hair
  • Widening of the hips
  • Menarche or menstrual body changes
  • Development of the vulva and pelvis

In Males

  • Growth of the penis, scrotum, and testicles
  • Appearance of pubic, underarm, chest and leg hair
  • Night‐time ejaculation
  • Morning erection
  • Development of back muscles

In both females and males

  • Accelerated growth and increase in body size and shape
  • Increased perspiration or sweating in the body
  • The presence of acne or pimples on the face
  • Face has characteristics of young adult
  • Change in tone of voice
  • Sexual desire activated
  • Initiation of sexual activities

These changes are good to know in order to start planning their care and management. In terms of body hygiene, they need to be told the importance of frequent bathing to minimize or remove body smell that makes it uncomfortable in the company of others. Girls can be prepared and given hygiene talks of body care in terms of menstruation and letting them know there are going to be times in a month when they need to take extra precaution to prepare themselves for menstruation which is very normal. There are some girls who take very long time to start menstruations and so it is very important to counsel them that it is normal and it happens and prepare them psychologically as they may be stigmatized by other girls for not being normal. For the boys, waking up in the morning with stiff erection is normal and this sometimes makes some boys think they are abnormal. Having wet dreams always excites some boys to start living what they dream of; it is then proper to counsel them that it is okay to feel that way but our life is sacred and the temple of God and has to be used well to please the Lord. They must learn to control their body emotions and not live under emotions but learn to rule the body emotions

 Adolescents also experience psychosocial and emotional changes like

  • Mood swings
  • Insecurities, fears and doubts
  • Behavioural expressions of emotion, which may include withdrawal, hostility, impulsiveness, non‐cooperation
  • Self‐centeredness
  • Feelings of being misunderstood and/or rejected
  • Fluctuating self‐esteem
  • Interest in physical changes, sex and sexuality concern about body image
  • Concern about sexual identity, decision‐making and reputation
  • A need to feel autonomous and independent

It’s very important to note that adolescents undergo rapid growth and development, resulting in both physical changes and changes in thinking, social skills, problem solving, and relationships.

These changes influence how adolescents interact, behave, and process information and so the major cause of some ways they behave in society and homes. Our role in this is very important to understand them and letting them know the way they behave is normal and letting them accept that it is bad to behave that way and they must try to control it and live in harmony and learn to forgive and move on with life in happiness and peace with others

Stages of Adolescent Development

Key points:

  • Adolescence can be categorized into 3 overlapping developmental stages: early, middle, and late.
  • The ages given are approximate; maturation is more important than specific ages.
  • Maturation occurs in fits and starts.
  • Growth in each category of change can occur at different
  • HIV impacts maturation in many ways.

No Longer Children, not yet Adults
distinguishing characteristics of adolescents may include:

  • Energetic, open, spontaneous, inquisitive
  • Unreliable and/or irresponsible
  • Moody
  • Desire independence
  • Influenced by friends
  • Less influenced by family
  • Looking for role models (often outside the family)
  • Embarrassed to talk to adults about personal issues
  • Desire to be different from parents and previous generation in general

These characteristics are generalizations — they are not all applicable to every adolescent client. This clearly points out why our children often find it difficult to open to us and why we need to build more trust with them so that they can easily open to us and approach us in case of any problem. This is an inborn thing but the trust we build will make it possible for them to open to us. This generational gap is the cause of agony in families and bringing the child to the Priest to be prayed for is not a solution enough but it has to do with the culture of the family and upbringing.

How Adolescents Differ from One Another

Adolescents are a heterogeneous group and may differ from one another in many ways, meaning they have different characters and personalities in one person or more in a group. This is brought about by;

  • Stage of development
  • Gender
  • Sexual orientation
  • Home or family situation
  • Educational level
  • Financial situation
  • Geographic location
  • Relationship or marital
  • Status of health or social status
  • Experience with stigmaand discrimination

Counselling and education should meet the unique needs of each adolescent and each child in front of you is a representation of the past life experiences that are either good or bad. The way this child will behave in front of you will depend on your reception of the child which can either make the child to like you or hate you. Here, we always need to apply the golden rule, do to others what you would expect them to do to you. Ask if you were in that situation yourself, how you would love to be treated, and then apply your own expectation to that situation to the person in front of you.

All that said applies to all children whether sick or not sick. Now when it comes to a child with terminal sickness, it becomes worse than what a child without terminal illness would go through. This normally brings a lot of stigma and discrimination to all of them from the child to the care givers who are equally affected positively or negatively with the reaction of a child with terminal illness.

Who are the Children infected by HIV/AIDS

  • Are neglected in the society
  • Ever abused
  • Some sexually abused by even their biological parents
  • Some have deep wounds of HIV infections they struggle to live within their hearts
  • Have lots of fear especially those without care takers
  • Never being listened to
  • Ever have broken love relationships
  • Not given time and chance to play with children
  • Segregated in some families
  • Forced into early marriages and sex for survival
  • Never get rights to school, health care, free association, food and shelter
  • Have no proper knowledge of their disease and medicines given at every clinic visit
  • Have lot of stigma and discrimination from the family and society
  • Lack proper feeding versus taking medications
  • Take drugs every day
  • Easily attacked by diseases
  • Have too long waiting hours in the clinic visits
  • Never given attention in schools
  • Suffer from dilemma in relationships and disclosure challenges
  • Is difficult for parents, care takers and health workers to talk about their disease
  • Have dilemma of their sexuality
  • Dilemma with relationships
  • Have nicknames given to them like malaria, moving skeleton, moving dead body…

Such instances make them live very unbearable lives, live in denial, and blame their parents to have infected them or blame themselves for their past reckless life that has made them to be infected with HIV. If you properly understand all this, it will be very easy to have a personal rapport with the child and learn what hurts him/her much in order to find a way out of what he/she is going through.

Common Psychosocial Issues

Psychological distress at illness and at the prospect of death is so stressing to the child being exposed to high risk of being orphaned leading to;

  • Lack of parental nurturing
  • Lack of basic needs
  • Loss of inheritance
  • Need to work
  • Less education and skills leading to social isolation
  • Stigma of living with HIV/AIDS
  • Effects of the physical condition of the body (e.g. chronic coughs, disfiguring skin conditions, body parts eaten up by HIV/AIDS)

In the end, this makes it very difficult for these children to believe that someone else can ever believe in them and accept them for all that they are going through in life. This is where our witness to Christ in the skin of the sick child starts from. St Mother Teresa of Calcuta showed us that it is not the profession but the heart for a sick person whom she said is Jesus in disguise that matters. These patients only need someone to talk to them and feel loved and accepted in the way they are matters to them the most. Sometimes we think we need to take something to eat and drink to the sick in the hospital, homes, but sometimes they have no appetite for food or drink but want to feel someone very near and close to them to listen to and hold their hand and pray together with them.

When we meet them and start talking to them in schools, orphanages and other areas, we may think they are all from great families and homes but the opposite is very true.

Who do some of these children live with?

  • Relatives
  • Parents/single parents
  • Guardians
  • Strangers
  • Child headed families
  • Live in streets
  • Mobile

The person they stay with will either make them to adhere well to medications or not. Some of them move from one place to another which affects their follow up on care and treatment and this brings about poor treatment outcomes. Some of them who find strangers to stay with end up being abused sexually or even killed for ritual reasons.

As we look at the places and people they stay with, it becomes clearly important to know their own feelings of living with HIV and Cancer. When we know their expectations, it becomes easy to help them in all that they are going through like their feelings concerning their HIV/AIDS and cancer disease which they live with;

  • Some feel it’s a curse from God for being with HIV/AIDS or cancer for their sins or the sins of their parents
  • They feel useless, lonely and deserted and feel the world has collapsed on them and life no longer holds meaning for them
  • Some get scared of marrying or fear someone will never accept to marry them with their HIV/AIDS and cancer and so no hope of getting any future partner
  • Some blame themselves for not listening to what their own parents were telling them not to indulge in living reckless life
  • Others regret why they were ever born and see how they will live with such life. We need to appreciate that it is very normal to feel and express such feelings and if they are talked to, a person who can listen to them and understand them can lead to healing of hurting memories
  • Some are so frustrated at their own parents for infecting them with HIV
  • Others conclude that they will not die alone and so will also infect as many others as they can after all someone also gave them the HIV virus
  • Others report lose in self-esteem and so cannot express themselves in front of others as they feel unworthy of recognition
  • Some feel rejected and useless how life will go on with no meaning to them as their future dreams are shuttered
  • Others cannot take the fact that letting someone so close to them know that they are HIV positive is possible as they will be stigmatized everywhere they go and fear such people will tell others about their HIV positive status
  • Knowing that they have HIV/AIDS makes them short tempered and easily involved in numerous fights when provoked and others do not have friends or cannot even maintain one if they make any in their life as they do not trust anyone.

Therefore, we need to encourage them so much that knowing and acknowledging their negative feelings is the best way to get healing in life. This will make them to recognize and manage their negative feelings to live a healthy life. This will also help them to overcome the misconceptions from the society about baseless judgment about them;

Some misconceptions we commonly meet in our care and treatment include;

  • Denial that one has sexual rights and feelings and so they let themselves live a life of opinions of others about themselves
  • Being haunted of the past life whether of their own making or being influenced by the friends to live a nasty past life
  • Looking at themselves as a living corpse with countable days, seeing no meaning in life and living anymore and so there is no need to take medicines and follow up anything suggested for positive living. Therefore, there is no need to go to school and get education just to die at the end of it all
  • They feel they are the worst sinners in the world as they are always blamed by pastors and even some Catholic priests for living a bad life and blaming them for spreading HIV to others when actually some of them really do not live that kind of life. This makes them not to turn to anyone else apart from themselves and that is why many of them end up killing themselves
  • They feel ugly and out-casted. This is made worse when some parents and care takers refuse disclosing HIV positive status to some children thinking the children will feel bad and yet the children already might have known they are HIV positive and keep on lying to them that they are taking medicines for Syphylis or Pnuemonia… This brings a lot of anxiety and stress. Some families make it worse by claiming better care to the sick child and others get less care and attention, thereby bringing about sibling rivalry that brings too much stigma to the sick child when others come to know that so and so is HIV positive or has cancer.

Despite all the negative thoughts that move through their mind, the children still have what they expect when they come across someone who has come in the way to give them hope and courage. They will confide in you if you try your best to understand them and fit in their shoes

Expectations of teenagers and adolescents

  • Understanding
  • Guidance/encouragement
  • Legal support
  • Respect
  • Holistic care and support
  • They expect unconditional love from whoever comes in touch with them; a person who will not judge them for what they are and what they carry in their bodies
  • They need someone who can listen to them, give them full attention so that they share what bothers them that they have never spoken to anyone. So, if you give your time to such a child and take him/her away from the rest and just encourage them to talk, this will bring a lot of healing to such a child but expect a lot of crying from both of you as their stories are emotionally draining
  • They need someone who can understand them and give them solutions or talk to them to find a solution for the problems they go through
  • These children need physical touch especially handshake that makes them feel loved and appreciated. Even in our own life when we get a handshake, we feel happy and loved and that is the same situation they are in despite their skin that sometimes has sores all over, a pat at the back makes them feel happy.
  • With the terminal illness, they have their dream of having a family and producing their own children, feeling loved by a partner, being referred to as having a home but not a house. With their condition, they feel this is something that cannot be achieved any more
  • They need somebody to be patient with them as their condition may not make them to be reasoning fast and an environment that is calm is good for them. They therefore need someone who can encourage them in all that they do as they never get such encouragement from their past life
  • In some situations, some people treat them differently either very good or very badly making others to be suspicious why so and so is treated so differently

Therefore, these needs and many more others these children have can make us to know where we can be of help to them in our daily work with them. When a child is always crying, isolated, depressed, committing crimes, getting addicted to drugs including alcohol, it is an indication of underlying behavioral or psychosocial problem going on in the life of this child. It would therefore be helpful if we identify such children and give special attention to them out of such problem. Winning the confidence of these children takes time and effort and when you have won their confidence, it’s worth the effort.

The first reaction you show to a child is enough to bring to their memory all that they have gone through in the past. Sometimes what we are reminds these children about their past. An example could be if you dress untidily and move about with uncombed hair, it could make them to remember the same man who looks like you that raped them. Likewise, over shouting reminds them of the stepmother, father who used to abuse and beat them at home and this will drive them into their world totally withdrawn from you and the rest. In a catechism lesson, God is our loving Father and so we must love him… a child put up his hand and said, if this God you tell us is our Father, I rather do without him, he is just like my father who beats me all the time… and he just moved out of the lesson. So, our outward appearance tells a lot about us to others in their own perceptions and this will affect the way we interact with them.

Always pay special attention to a child who is always isolated, not interested in what others do and has very flat moods. This shows lack of love from the family or environment they come from. This can be the behaviour of children both HIV positive and HIV negative. We shall talk more about the HIV positive children who sometimes are also found to be suffering from cancer.

 Let us focus our attention now on the HIV/AIDS and Cancer patients:

They have the following expectations to be an ideal person. All these feelings affect the adherence of these children to medications and encouraging them to get hold of their negative feelings and knowing that such feelings are very normal brings about positive changes in their positive living process. Encouraging them to treat themselves physically, treating their mind, treating their body and soul is the way forward. Someone with full anger needs therapy from all the holistic angles. Encouraging the child to get a note book or exercise book to write down all that annoys him/her every time and going over that list with someone paying attention to them is very helpful in finding out what bothers them so much. Accepting HIV positive status is not very easy and it takes time and effort.

In a study done in Uganda about the adolescents, A. Barbara et al (2014), found out that about 130,000 adolescents (10-19 years) are living with HIV/AIDS with limited services among adolescents in Uganda. The study carried out between January to March 2013 with quarterly facility records found out that the 122,510 of the adolescents were counseled, 119,426 (97%) accepted to be tested. 2,937 (2.5%) of them tested HIV positive and 87% of the positives enrolled into care. Only 12,695 (29%) of the 43,333 eligible adolescents living with HIV in Uganda are on antiretroviral drugs way below 80% of the country’s target. This is only a very small representation of the problem faced by the adolescents world over.

This shows our need to look at them in a way that can help them to live a better life with HIV/AIDS.

For those who are on medicines for HIV/AIDS, we need to monitor that they take them well, the right medicine, right dose, right time, right route and right child in case they are many in care. Being in touch with the health workers where the children get care and treatment is good to find out the instructions for each child to be followed well at home/care centres.

What matters most to these children?

  • To be listened to
  • Care
  • Equal treatment with others
  • Education
  • Having their own families/marriage
  • Shelter/accommodation
  • Appreciation for anything that they can do

Help them to identify life skills and career opportunities. This includes activities that they can do to earn a living from, like farm work, handcrafts, good behaviour and prevention of physical harms, moral uprightness and many others you can positively identify in them to learn or improve.

Giving time and concern to children is what matters most to them. Providing basic needs for living is good but the children feel loved and appreciated if someone gives them quality time to play and tell stories and listen to them as they express their inner most feelings.

What they think about sex

They think sex is;

  • Exercise
  • Enjoyable activity
  • Game
  • Procreation- for producing children
  • Act to strengthen relationship
  • Passing time
  • Satisfy natural demands
  • Source of entertainment
  • So natural demand
  • Gift from God
  • Something to prove manhood
  • Usual thing
  • Practical
  • Source of income-employment
  • Medicine for pimples
  • Exercise to lose weight
  • Personal feeling

When we look at what the children discuss about sex, it is amazing to understand why they move uncontrollably with immoral life. No wonder many girls get raped by boys and men who have such above thoughts, thinking you need sex when you are stressed, have pimples on your face, wanting to lose weight. Our help and guidance to the children is very important in the world of today which is so challenging. Putting these young people in focus group discussions to understand what they think locally in their surrounding concerning the above issues will make you get real spot on solutions for them. Many children find comfort in their peers which makes them to get into troubles and diseases including sexually transmitted infections and HIV/AIDS and so wherever we are, we must be an eye opener to them to guide them through the turbulent storms of life.

RiskTaking as a normal Part of growing up

Adolescents take risks as a normal part of growing up and this involves them getting into risky adventures. Risk-taking is the tool adolescents use to define and develop their identity. Healthy risk‐taking is a valuable experience as they are always adventuring in all that you do.

Healthy risktaking includes participating in sports, developing artistic and creative abilities, travelling, making new friends and contributing constructively to one’s family or community.

On the other hand, curiosity, sexual maturity, a natural inclination towards experimentation, and peer pressure, can lead to unhealthy/negative risktaking. This includes:

  • Drinking, smoking, using drugs
  • Driving recklessly
  • Unsafe sexual activity
  • Self‐mutilation
  • Running away
  • Stealing
  • A sense of powerfulness, feelings of invulnerability, and impulsiveness can lead to a lack of future planning.
  • Risk‐taking can be caused by a lack of knowledge.
  • In some cultures, young men are encouraged to take risks as a way of proving their masculinity.

This calls us to be vigilant in all that we interact and see with the adolescents as we interact with them on day to day basis. Where we see they are going off tract, it is helpful to come in as a counsellor and move forward with a solution.

Types and Consequences of Unhealthy RiskTaking Behavior

Unhealthy risktaking can result in:

  • Poor adherence to ARVs or HIV care and treatment
  • Unprotected sex
  • Experimentation with alcohol, marijuana, etc. Can interfere with judgment and adherence
  • Can suppress the immune system; can make a person more vulnerable to diseases, can compromise body’s response to ART
  • Can adversely interact with HIV medications, causing illness
  • Can reduce inhibitions and affect decision‐making

In a Botswana study, heavy drinking was associated with unsafe sex, sex with multiple partners, paying for sex, and intergenerational sex. Much as this study was done in Botswana, it is a common problem in many developing countries that needs to be tacked well. Some of these vulnerabilities include but not limited to the following;

Physical Vulnerabilities

  • Young people, particularly young women, are more vulnerable to STIs than adults.
  • The cells lining the inside of the normal adolescent cervical canal are more vulnerable to infections than the cells that line the mature cervical canal of adults.
  • All people living with HIV/AIDS including children are particularly vulnerable to nutritional and caloric deficiencies, due to the increased energy demands HIV imposes on the body.
  • HIV can contribute to compromised physical and psychological development, including stunting and slower than normal growth

Social, Psychological, and Emotional Vulnerabilities

  • Psychological factors that put many adolescents at increased risk of physical harm including a general sense of invulnerability, the desire to try new things, and a willingness to take risks.
  • Adolescents’ family situations may offer little social and material/financial support.
  • Mental health problems can increase during adolescence.
  • Adolescents often lack maturity, assertiveness and good communication skills, difficulty making good decisions, articulating needs and withstanding peer pressure
  • There are often unequal power dynamics between adolescents and adults; adolescents are more vulnerable to abuse.

 Socioeconomic Vulnerabilities

  • The need for money often increases during adolescence as they always compare themselves with those who have and will do anything they can to get money. We need to watch these activities from our children we care for
  • Lack of access to money or employment can lead adolescents to steal or take work in hazardous situations.
  • Economic hardship can increase health risks in which basic needs of life may not be accessed.
  • Adolescents are more likely to experiment with drugs and alcohol, and disadvantaged adolescents are at greater risk of substance abuse.
  • Young women are particularly vulnerable as they can be turned into prostitution with too much sexual abuse
  • They often face gender discrimination that affects food allocation, access to health care, adherence to care, the ability to negotiate safer sex, and opportunities for social and economic wellbeing.
  • Some marry very young to escape poverty with the hope that marriage will help solve their problems but end up into more problems of early teenage pregnancies with very high mortality rates
  • Many adolescents are at risk due to other socioeconomic and political reasons where they can be deceived for sex slavery, cheap child labour and being recruited into child soldiers which is so common in our African settings

Some common challenges faced by parents and caregivers of these children

We also meet regularly with the parents and guardians and care takers of these HIV positive children on treatment and the some of the challenges they face include;

  • They are always very busy and have no time to monitor these children on how they take their medications and their feeding at home is left to domestic care takers in which it is not done well some of who do not know why such medicines are given to the children
  • Time factor when a child is given twice in a day pill and they may manage to give morning pills but evening pills are either not given or given very late and this affects the treatment outcome of the child negatively
  • Some of these children are mobile moving from one relative to another thereby affecting their routine medication taking
  • Some of the children have very poor appetite that affects their medicine interaction in the body leading not eating the available food the family can afford
  • Some children are not explained to why they take these daily medicines which makes them to refuse taking medications as they do not know they take them

It is very important to understand these few and many other reasons why some of the children get problem with their medications so that you can personally understand and come to help the family cope with the burden of caring for their children. The best approach is holistic in which different people can be brought on board to tackle some of the identified problem for the good health of the affected child.

                                       How to communicate with the children

 Communication should specifically address the concerns, fears and questions of the child. Children should not be forced to tell their story.

  • If a child cannot communicate verbally about something, there will be good reasons why that is the case including:
  • Tradition and cultures: In African tradition, children are ‘seen but not heard’.
  • Children in African cultures are not allowed to disagree with adults. They are brought up and always instructed to be quiet and humble and never to talk when adults are talking.
  • Children feel embarrassed to discuss HIV/AIDS with adults because it relates to taboo subjects such as sex.
  • Children might fear hurting adults. They might fear and hide their feelings in order to protect their parents, particularly if parents or guardians are unhappy.

Effective Communication with Children

  • Insist on child-focused, not parent-focused, sessions.
  • Talk with the child, rather than to or about him/her.
  • Handle the likely reactions and questions during the process of consultation/counselling.
  • Assure confidentiality or be honest beforehand about anyone who will be told what the child confides in.
  • Be approachable.
  • Avoid a commanding tone or judgmental attitude (prejudice).
  • Avoid imposing adult values on children.
  • Avoid comparing the behaviour of children under stress to other children.
  • Don’t make empty promises and follow up what you promised.

Characteristics of Youth-Friendly Services

In order to serve adolescent clients with HIV prevention, care, treatment, and support, and related health services,

All environments for interacting with children must be able to attract, meet the needs of and give confidence to these children.

  • Specially trained/oriented staff about child care no matter what they do in the facility or place where the children stay
  • All staff display respect for youth regardless of what they are and what health conditions they are in
  • All staff should maintain privacy and confidentiality to the highest degree and get rid of people who cannot keep confidentiality
  • Enough time for interaction with the child especially when they have accepted to open up to you
  • Special times when young people can receive services or seeing children with special needs
  • Convenient hours for seeing them
  • Convenient location away from the rest
  • Adequate space and privacy
  • Comfortable, youth‐friendly surroundings
  • Peer Educators available to talk to the children and share their own experiences to the children as testimony from someone like them is more powerful than a spoken or researched material               

What can we do as we move on with them in such emotional journey of care and support?

  • Let us focus on their concerns and develop very good rapport to know more of what hurts them most and what they always feel sharing with someone so caring to them
  • We need to empower them in accepting their own status and know that having HIV/AIDS does not mean end of life dreams and what they can do with what they are going through
  • Find out if it is possible to develop treatment partnerships with the different significant people in the life of the child may be at home, in the caring centre. This therefore calls to form a team with different people who can handle different aspects of the needs of the child physically, psychosocial, economical and spiritual
  • Endevour to follow up all the programs you propose to implement or plan to do
  • Some children who have recovered from your efforts can be empowered with basic knowledge and skills to start following other children (peer model of care) and they always believe a lot in the testimony of their own peers who has recovered from a similar situation they are going through and putting them in focus group discussions to share and advise each other is very helpful in the long run to overcome stigma and discrimination. This will also bring full community involvement in the care of these children and sustainability of such programs in case you move away to another place of assignment as a missionary
  • Teachers and matrons, wardens all need to be assessed to rule out stigma and discrimination which easily comes from them due to failure to control emotions, or ignorance and working with the teachers, matrons, school nurses, care takers in orphanages is paramount in making life comfortable for these children to cope with their status of livelihood.
  • We encourage equal treatment for all work they are supposed to do unless if medical advice demands the children to be kept away from doing some work like in cases of asthma or allergy to the child, chest problems which can all affect the wellbeing of such a child. This will stop the feeling of loneliness and isolation which they feel most of the time. This also can let them open up to their friends who prove to be understanding so that they can easily help them to cope with treatment and care procedures to remind them of their next appointment taking their daily pills
  • Allocating them to lead some groups doing activities improves their self esteem
  • Be open to them and encourage them not to fear you and encouraging them to join in playing football, netball, or any activity they can do. Please be cautious in getting into close contact in case of bleeding and exchange of body fluids which can infect you with HIV or hepatitis virus. Much as we care, let us also be careful as prevention is better than cure
  • Encourage them to tell you anything that happens to them anytime, anywhere like rape as soon as it happens
  • Never blame them for anything that happens to them currently or part of their past but instead support them in any way you can. Having a positive care attitude to a sick child has a very huge impact on their recovery from sickness and wellbeing.
  • Encourage them to change themselves but not their friends because at the end, it is their own life not of someone else
  • In teenage and adolescent care, take them as they are, understand them, be in their shoes, be their best friend, remove care shoes, come down to their level even if it means sitting down on the floor with them, that would be very beautiful. Reassure them on what they are going through, sit down and cry with them, laugh with them, cheer with them, eat with them

Life skills training on choice and self-esteem

As put clearly we need to empower adolescents on how to make choices and how they can have self-esteem which has already been eroded by negative public opinion. This is a very creative, educative and interactive session for the adolescents where they are given opportunities to share their understanding of the concepts of both choices and self-esteem in their life. It makes to challenge them on what they can do when alone, in the group of friends, family and what they can do when they are faced with challenging situation of fight or flight, or making a life and death choices they face.

Reasons why adolescents, like any other person, need to have life skills

  • Make good decisions
  • Set goals
  • Understand themselves selves
  • Develop better relations with others
  • Solve day to day programs daily problems including money, relationship, personal management and hygiene, jobs and career development and many others
  • To develop communication skills so as to be well understood
  • Anger management
  • Conflict management
  • To attend school regularly
  • To keep good hygiene at all times both the environment and the personal hygiene and to be very smart in dressing and body
  • Respect for every person and property
  • To pray every day
  • To avoid using abusive language at all times
  • Empathy
  • Self control and self understanding programs
  • Time keeping
  • Behaviour with adults, elders, opposite sex, drinking

Channels of acquiring life skills

  • Person to person interaction
  • Education in forms of seminars, workshops, prayer groups and many others
  • Experience sharing
  • And other Social interactions

In summary

Adolescents need to be handled separately well since they are going through a rapid change of behaviour, identity disturbances and strong emotions which are always confusing to the society. In order to build their confidence, there is need to associate more with their peers since they are the ones they trust. Interaction with the service providers and parents are very essential since adolescents are often vulnerable to negative peer pressure.

Taking care of the adolescents need a multi disciplinary team of different professionals who bring their different backgrounds for the good of the young people and inter-linking with other organizations for services you cannot give is very essential.

The author, Eric Ezati, works with Reach Out Mbuya Parish HIV/AIDS Initiative in Mbuya Parish Kampala, Uganda