Chapter 24 – Evonne Mushonga (D2SOP1)
Domain 2 Standard of Proficiency 1
Be able to communicate diagnosis/assessment and/or treatment/management options in a way that can be understood by the service user
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KEY TERMS Assessment Diagnosis Treatment options Communication
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Social care is … the ability to empower others to speak up for themselves and to make a difference in a person’s life. |
This proficiency can be specifically applied to various social care contexts. The importance of communicating treatment interventions in a way that can be understood by the service user is one of the central elements of social care practice. Social care workers provide a broad spectrum of care with diverse people in response to the political, economic and social demands occurring globally. The practice sphere of the social care worker has expanded greatly because the competencies and skills of social care professionals can be positively transferred into different areas of care and support, for example working with older people, domestic violence support, homeless services and addiction services. This chapter is based on my experience as a social care worker in one of these new practice settings, a service for people diagnosed with the human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS). In order to help you, the reader, understand this proficiency, I decided to base the chapter around how this service communicates the diagnosis/ assessment and/or treatment/management options available to people with HIV or AIDS. The case studies presented here are fictional but are used to demonstrate an effective and supportive way to communicate information on the diagnosis, assessment and treatment options for people receiving an HIV positive result (Jamison et al. 2006).
The organisation I work for operates under an ethos of equality and is committed to making a positive contribution towards a humane and just society (HIV Ireland 2015). This service strives to ensure that all staff, volunteers and service users are always treated with dignity and respect in an environment that promotes equal opportunity and prohibits discrimination. The main aim of the organisation is to raise awareness and provide training, support and advocacy; it also provides free community HIV and sexually transmitted infection (STI) testing, free counselling, a free resources service, as well as disseminating free condoms in the community. In this service, social care workers are referred to as support workers and the service users as clients.
The assessment interview is the initial opportunity afforded to a social care worker to start building a working relationship with a client. Through the interview process the client’s past experiences and coping strategies are discussed, along with their goals for treatment. At the same time, the client’s strengths and unique needs are identified, which helps the service ascertain the best intervention strategy for them. The assessment is a long process that begins with the initial interaction with the client and continues throughout the duration of the intervention (HIV Ireland 2015). The assessment process establishes the social care worker as one part of the client’s support system. Therefore, it is important for the worker to be patient and sensitive to the client’s needs in order to gradually find out from the client how they can be of support. It is necessary to aid the client to build their own support network, in addition to the service, to have better and longer-lasting outcomes. As a worker, the support you provide is social, emotional and, most importantly, empathy.
The ability to display empathy is vital in validating the client’s feelings. Empathy assists in the acceptance of the client’s plight, and enables them to realise that they are being genuinely listened to. Empathy in practice means accepting and understanding the client’s feelings, which may help you to become better equipped to facilitate the service user to help themselves. This requires learning and experience and can be achieved through practice (Gilbert et al. 2017). During the assessment phase it is vital not to be judgemental about the client’s circumstances, but rather to adopt a neutral position. You can achieve this by keeping an open mind and by not imposing your own religious, political and personal views on the client. It is also important to read and learn the social care workers’ code of ethics to guide one’s judgement (SCWRB 2019).
The first case study illustrates the background information that is shared during the initial assessment process. This case study is fictional but is based on the type of assessment process people who have received a diagnosis of HIV/AIDS may experience.
Case Study 1
Assessment Stage
The fictional client is a male called John, and he is in his late 50s. John was once married, and has two children, who are in their 20s. John has been unemployed for more than more than five years. John stated that he lived a happy life before he lost his job. He worked as a security man for a long time and provided for his family well. The second tragedy he discussed was the breakdown of his family. This was precipitated by his heavy drinking tendencies that became worse after losing his job. During this time, his wife left him, taking the children with her, and John remained in the family home. In the beginning the children visited him regularly, but John was unable to keep up with the mortgage repayments and the family home was repossessed. John now lives rough on the streets. John stated that he comes from a strong family and his mother, three sisters and two brothers are all still alive. He described how his family looked up to him as a father figure after the death of his own father.
Since last year John has come out as gay to his family. He met a young man in a homeless shelter and they began dating. Although his family know he is gay, he has concerns about their acceptance of him as they hold strong Catholic beliefs. In the final part of the initial assessment, John discussed how he suspects he has contracted HIV. John does not know much about HIV and AIDS. He considers HIV a death sentence. He does not know about medications or if they will work very well if taken as prescribed. All this confusion is expressed during the assessment meeting, as it is not confirmed at this stage that he has contracted HIV.
Trust-building skills were employed during John’s assessment phase. A strong therapeutic relationship with the client is developing, through helping him identify a support system, accurately assessing his needs, and empathising with his own unique situation in a non-judgemental and value-neutral way.
Because John felt safe, he opened up about his life and volunteered information to the support worker. He stated that he felt comfortable and looked forward to the next meeting. It is important to note that if the social care worker does not feel that John is able to process all this information, they can refer him to a counsellor to provide additional support at this time (Kabir 2017).
Diagnosis
Diagnosis can be referred to as the process of helping the client to make sense of their medical condition. It can also be part of the assessment process. In the case before us, the client is worried that he may have contracted HIV. As a result, there is a medical diagnostic process that needs to be performed. However, the diagnostic process must be supported with clear and accurate verbal communication, patience and empathy.
Case Study 2
Diagnostic Stage
Meetings continued regularly between John and me. After two months, John could not be found. I suspected that it was a result of our last discussion, in which I suggested that there was a need for him to know his HIV status. At the time, he was not too keen to know. He gave me the impression that he did not want to know; however, John promised me that he was going to think about it. I was committed to help John and work at his pace, but I felt it was important to reach out to him.
A week elapsed without yielding any results. At the end of the second week, I came into contact with him. He was very surprised that I was looking for him, but he appreciated the care and concern. He stated that he did not come to our meetings because he still had not made up his mind whether to check his HIV status. I told him that he will never be forced to know his diagnosis. However, I explained the advantage of knowing early, especially if he was HIV positive. I discussed the benefits of early intervention. The following morning, I was surprised to receive a phone call from John. He told me that he wanted to meet me as soon as possible and we made an arrangement to meet the following day. He told me he was ready to know his HIV status. I further explained that diagnosis can happen in two ways: self-diagnosis by home testing with kits provided by HIV Ireland; or through hospitals and/or clinics. He suggested we go to hospital, and we did. The hospital staff were very respectful and provided a private room for the consultation. I continued to assure him that everything would be alright regardless of the outcome. He was shaky but still wanted to go through the process. His diagnosis was HIV positive, and I stayed with him to help him understand the information provided by the clinician.
When John found out his HIV status, he did not want to discuss anything further that day. He told me he would be in contact as soon as he was ready to talk. I respected his wishes, at the same time encouraging him to consider early intervention. He promised he would be in touch before long. After a few days John phoned again and said he was in a position to meet me. This time I decided to meet him in a hotel setting. I bought him lunch just to make him feel loved and cared for. It was important to show him I cared so much about him. After lunch we sat in the lounge, far from everyone else for privacy. John told me he had not been in a hotel for some time and expressed his gratitude to be there. Before long, we got into a serious conversation. He told me he did not understand how I could say things were going to be okay when he was HIV positive. That question gave me a chance to explain to him all the treatment that is available for people living with HIV. This was the next step of my journey with him after diagnosis, to explain the following points so that he could ask questions and take his time to digest the information.
- HIV is no longer a potentially terminal illness; it is a chronic illness and people can live long and healthy lives if they adhere to their HIV medication, attend hospital appointments, and take care of their general health.
- If someone is taking their HIV medication and has ‘undetectable’ HIV viral load (as will be determined by their physician), HIV cannot be passed on to their sexual partner(s).
- Even women who are living with HIV and who are adhering to their HIV medications can give birth to HIV negative babies (WHO 2007).
- A person living with HIV (PLHIV) who has a good immune system may not need to take medication but will have regular check-ups.
- A PLHIV will regularly attend hospital every 4-6 months to have their viral load and CD4 count checked.
- Ongoing counselling and support are crucial at this stage.
Towards the end of the meeting John burst into tears, telling me that he had wasted his life. He was in despair and did not know how he could get back to his old self again. I assured him I would be there for him and would do my best to help him start a new life. At the end of the meeting, I was happy that John had expressed the desire to turn his life around. The next day I made an appointment for him at the hospital, and he started treatment.
The role of the support worker is to support the client with their diagnosis, provide accurate information and guide them in their HIV journey. Also vital to a person living with HIV is peer support; Positive Now is a national peer support group that runs support/social groups, workshops, forums and conferences for people living with HIV (HIV Ireland 2015). The newly diagnosed can benefit from peer role models who can identify with the shock of a positive diagnosis while also explaining that HIV is no longer a terminal illness. Peers can also help orientate and support people living with HIV around the important issues of medication compliance and disclosure (Rouleau et al. 2019). As HIV-related stigma is still prominent in society and is equated with sexual activity and/or drug use, it is important for the social care worker to be open-minded and non-judgemental. Social care workers need to educate themselves on how HIV is and is not transmitted. It can only be passed on through unprotected sex, from mother to unborn child (if the mother is not on HIV medication), and through infected blood products (which, in Ireland, is extremely unlikely) (WHO 2016).
Someone living with HIV might not return or engage further with the service if he or she feels judged, or if the social care worker, fearing possible infection, treats the person living with HIV differently from others. Such actions and attitudes will further compound the vulnerability of the client. Often people living with HIV feel a lack of control over their lives, particularly around the issue of choosing to disclose or not to disclose their HIV positive status. In respecting the service user’s wishes, and in considering their feelings, service providers can help them regain a sense of control over their circumstances. Additionally, social care workers have the responsibility to educate themselves about the rights of service users who are living with HIV and to ensure that service users know and understand these rights. This can help to empower service users to ask questions, especially about the decisions being made on their behalf.
Treatment Options
HIV treatment is also known as antiretroviral therapy (ART), or highly active antiretroviral therapy (HAART) (WHO 2016). Treatment with anti-HIV drugs is often called combination therapy because people usually take more than one drug, usually three, at the same time – often combined into one tablet. Current HIV treatment is not a cure for HIV (WHO 2016). It can keep HIV under control, but it does not eliminate HIV. HIV treatment works by stopping the virus from reproducing in your body. It can reduce the amount of the virus (your viral load) to very low (undetectable) levels (Rouleau 2019). If you are taking HIV treatment regularly and have an undetectable viral load, this lets your immune system stay strong, and, if the virus has damaged it, allows it to recover. Since antiretroviral therapy first became available in the mid 1990s, enormous progress has been made in the treatment of people living with HIV such that, for many, life expectancy is similar to that of the general population (WHO 2016). If you are taking HIV treatment correctly, and achieve and maintain an undetectable viral load, there is effectively no risk of passing HIV on to others. HIV treatment is beneficial from an individual perspective, in that it keeps your immune system strong, prevents illness and improves your life expectancy. HIV treatment is also beneficial from a population perspective in that it prevents HIV being passed on to others. This is known as treatment as prevention (TasP) (WHO 2016).
Communication
Case Study 3
Treatment and Living with HIV
It is six months now since John started medication. He has been very consistent in taking his medication. As a result, the doctor has told him that the HIV is no longer detectable in his body. John is keen to turn his life around. He has paid frequent visits to his brothers and sisters. He makes sure he is sober and clean during the visits. He wants to win their trust again. His siblings are extremely happy about him. One of the brothers has been arranging meetings between him and the children.
However, John is faced with the challenge of communicating with friends and family about the HIV diagnosis. He wants to be honest, but at the same time he is not sure about his loved ones’ reaction. Following discussions with the family, a meeting was arranged at which John was going to let his family know what had transpired in his life, including the HIV status and the gay relationship. I helped him to prepare what he was going to say to his family. At first, they were horrified about both issues. I gave them some comprehensive education on HIV and the fact that the virus is now not detectable. At that point the family became relieved and had the opportunity to ask questions in a safe and non-judgemental environment. At the end of the meeting, we discussed the importance of their family as John’s support network in living with HIV.
Communication is key when dealing with service users who are HIV positive. The newly diagnosed are often given a lot of information by practitioners and is important to determine whether the service user has understood the information relayed by the medical practitioner (HIV Ireland 2015). While social care workers are not medically trained, there are World Health Organisation-endorsed key messages which social care workers should ensure people living with HIV understand (WHO 2016).
This is the most important first step in the process of communicating important information to the service user. The following are the key steps to consider:
- Establish a relationship with the service user. This is paramount because you need to make sure they are comfortable telling you everything that is going on, which will be better for them and their health.
- Communicate with the service user. Explain the issues to them in a language that they understand and check with them whether they understood what the consultant said.
- Meet the service user where they are at and listen to them in a non-judgemental way.
- Assure the service user that HIV is a chronic illness, not a terminal illness, and the treatment will enable them to live a long life.
- Develop trust with the service user by having open and honest communication.
For many people living with HIV, counselling and support is a vital service for them and their significant others. Often service users who are newly diagnosed request support around disclosing their HIV positive status to family, friends and, particularly, partners. Communication is key, and part of the role of the social care worker is to support the service user to communicate information on their diagnosis to their friends and family (HIV Ireland 2015). They may need to develop coping mechanisms in relation to their diagnosis and living with a chronic, and stigmatised, illness. Those living with HIV for many years can also benefit from counselling as HIV-related issues arise in their lives. This is another example of the importance of establishing a relationship based on trust and respect, achieved through checking back in with the service user on how they are living and coping with this diagnosis (HIV Ireland 2015).
The story of John above is a good example of how much a trustworthy relationship between client and support worker can achieve. In the case study the social care worker did not relent on visitations. She realised the client wanted to turn his life around and she helped. Similarly, when the client wanted to communicate his HIV story, the social care worker was present, and she helped the client to reach out to his family for support.
Conclusion
Through support, advocacy and training, social care workers can help to improve the lives of PLHIV and those affected by HIV. The agency I work for values the rights of service users and seeks to ensure that service users understand and exercise these rights and that they do not experience HIV-related stigma in society by promoting HIV and STI testing, educating communities, and empowering people living with HIV to self-advocate. Living with a stigmatised illness such as HIV can be very difficult for those affected by the illness and they may feel hesitant working with service providers. However, by ensuring there is good communication from the beginning of engagement, by remaining compassionate and non-judgemental, the service provider and the social care workers can optimise service user engagement and be able to communicate diagnosis/assessment and/or treatment/management options in a way that will be understood by the service user.
Tips for Practice Educators
Trust-Building Skills
The ability to display empathy is vital in validating the client’s feelings.
During the assessment phase, it is vital not to be judgemental of the client’s circumstances, but be neutral at all times.
Remember that the assessment is to help the social care worker develop the best intervention strategy to meet the client’s unique needs.
Social care workers need to be sensitive and supportive of their client, and this comes in the form of social support, emotional support and empathy.
It is imperative not to be judgemental of your client’s circumstance but be able to keep an open mind without imposing your own religious, political and personal views on your client.
Identify factors that can diminish a client’s acceptance of a new person in their life. Deal with them, then you will be able to support the client.
Communication Tips
Listen more than you speak.
Understand the client first before making a comment and never interrupt.
Understand the needs, wishes and values of the client.
Begin with empathy.
Take responsibility for your own feelings.
Make requests that are practical, specific and positive.
Use accurate, neutral descriptions.
Be willing to hear ‘No’.
References
Gilbert, P., Catarino, F., Duarte, C. and Matos, M. (2017) ‘The development of compassionate engagement and action scales for self and others’, Compassionate Health Care, December, 4(1).
HIV Ireland (2015) Living with HIV in Ireland: A Self Help Guide. Dublin: HIV Ireland.
Jamison, D., Breman, J., Measham, A., Alleyne, G., Claeson, M., Evans, D., Jha, P., Mills, A. and Musgrove, P (eds) (2006) Disease Control Priorities in Developing Countries (2nd edn). New York: Oxford University Press.
Kabir, S.M.S. (2017) Essentials of Counselling. Bangladesh: Abosar Prokashana Sangstha Publishers.
Rouleau, G., Richard, L., Côté, J. and Gagnon, M. (2019) ‘Nursing practice to support people living with HIV with antiretroviral therapy adherence: A qualitative study’, Journal of the Association of Nurses in AIDS Care, May, 30(4).
Social Care Workers Registration Board (2019) Social Care Workers Registration Board code of professional conduct and ethics. Dublin: CORU Health and Social Care Regulator. Available at https://coru.ie/files-codes-of-conduct/scwrb-code-of-professional-conduct-and-ethics-for- social-care-workers.pdf.
WHO (World Health Organisation) (2016) Consolidated Guidelines on HIV Prevention, Diagnosis, Treatment and Care for Key Populations – 2016 Update. Geneva: WHO.
