Parent study
This project employed a mixed method sequential explanatory study to explore retention in the PMTCT programme. It was organised as a two-staged study that included a retrospective cohort study and an Appreciative Inquiry (AI) that was further organised into four phases; initiate, inquire, imagine and innovate. The full study design is described in the thesis (18). This current study is the “inquire” phase of the AI process. That sought to stimulate the sharing of experiences as well as reflections on the life-giving factors (19) that promoted the nurse-patient relationships in the PMTCT programme
Study design and participants
The study was designed as an appreciative inquiry that adopted qualitative explorative descriptive research design to explore relationships that developed between the nurses, midwives and their clients in the PMTCT programme and its impact on retention.
Population and Sampling
The population included women who had tested positive to HIV in the PMTCT programme during the peripartum period and nurses and midwives whose core responsibilities included provided PMTCT services.
The mothers were eligible to participate in the study if they had remained in the PMTCT programme throughout pregnancy until the sixth postpartum week and had presented their babies for DNA PCR testing for HIV. The midwives acted as gatekeepers and assisted in the recruitment of eligible mothers into the study.
On the other hand, the nurses and midwives should have provided care in the programme for at least one year at the time of data collection to be eligible for the study. Recruitment was conducted by contacting them in-person to discuss the purpose of the study. Using purposive sampling, twenty-four women were enrolled in this phase of the AI process; Equal proportions of participants (12/24) were either health professionals or clients enrolled in the PMTCT programme.
Study sites
The study was conducted in the maternity unit, comprising the antenatal, labour and postnatal units, and child welfare clinics at a secondary referral health facility in Ghana. The facility provided the full complement of the PMTCT interventions, including counselling, testing and ART treatment within the IMNCH services. The approach for treatment was option B + as per the national protocol.
Data collection
Using a semi-structured guide, individual generative conversations (20) were held with twelve women infected with HIV to elicit information about their relationships with the midwives and community health nurses providing care within the PMTCT programme and to explore how their interactions with these health workers impacted their decision to remain in the programme. The conversations were conducted in Fanti; a native Ghanaian language, or English at the preference of the mothers.
Further to this, paired interviews were conducted with the nurses and midwives to elicit their experiences of establishing and maintaining relationships with their clients in the PMTCT programme. These interviews were conducted in English and transcribed verbatim.
The generative conversations and paired interviews lasted between thirty to forty-five minutes and were audio-recorded to enable the researcher ensure an accuracy that could not be obtained from memory or field notes (21).
Trustworthiness of the study
Trustworthiness was ensured by following the constructs proposed by Lincoln and Guba (22). An audit trail of methodological decisions was maintained throughout the study to allow for confirmability while a detailed description of purposively sampled participants was done to ensure transferability. To guarantee dependability, back translation was done to ensure meaning of data was not lost in translation, and peer review was done to validate the themes.
Data Management and analysis
The data unravelling was conducted manually and followed the approach for thematic analysis prescribed by Colaizzi (23). The researchers began the analysis by repeatedly listening to the tapes and reading the transcripts. Transcripts in Fanti were translated into English and later back translation was conducted by. As a native Fante speaker, the Primary Investigator was in a position of being a translator of language, meaning and the culture that permeated through the narratives. Following this, statements that were noteworthy were identified and extracted from the dataset and imputed in a thematic analysis tracking map. Meanings were then generated from the statements. Thereafter, the formulated meanings were sorted into categories. Finally, clusters of the categories that reflected particular trends of thought were merged to form sub-themes and the themes.
Findings
Sociodemographic Characteristics of Participants
Twenty-four women participated in this phase of the AI process; Equal proportions of participants (12/24) were either health professionals or clients enrolled in the PMTCT programme.
Of the twelve who were health professionals, four were community health nurses while eight were midwives. With the exception of one community health nurse who was 56 years, all the other participants were within the reproductive age group. They provided PMTCT and MNCH services at the antenatal, postnatal and labour units along the cascade. The aggregated length of experience of the health professionals was 64 years. The profile of the health professionals is presented in Table 1.
Table 1
Profile of health professionals
Pseudonym | Age | Status in PMTCT | Unit | Experience in PMTCT (years) |
Afua | 43 | Midwife | Labour | 5 |
Araba | 31 | Midwife | Antenatal/ Postnatal | 3 |
Adwuba | 45 | Midwife | Antenatal/ Postnatal | 13 |
Baaba | 33 | Midwife | Antenatal/ Postnatal | 2 |
Ekua | 28 | Midwife | Labour | 4 |
Ekuba | 30 | Midwife | Antenatal/ Postnatal | 2 |
Esi | 43 | Midwife | Labour | 8 |
Yaa | 29 | Midwife | Labour | 3 |
Abena | 34 | CHN | Public Health | 3 |
Adwoa | 31 | CHN | Public Health | 4 |
Akosua | 56 | CHN | Public Health | 5 |
Ama | 43 | CHN | Public Health | 11 |
At the time of the interview, all the mothers were at the postnatal phase of the PMTCT cascade. Eight of the mothers had disclosed their HIV status to either their husbands or to an immediate family member. All the mothers had remained in the PMTCT programme following their HIV positive diagnosis, with the shortest length of engagement being seven months recorded by three clients. The profile of the mothers is presented in Table 2.
Table 2
Pseudonym | Age | HIV Disclosure status | Status in PMTCT | Phase in PMTCT cascade | Period of enrolment in PMTCT (months) |
Blessing | 20 | Yes | Client | Postnatal | 9 | |
Comfort | 27 | Yes | Client | Postnatal | 11 | |
Esther | 33 | Yes | Client | Postnatal | 8 | |
Felicia | 25 | Yes | Client | Postnatal | 7 | |
Grace | 26 | Yes | Client | Postnatal | 10 | |
Irene | 35 | Yes | Client | Postnatal | 10 | |
Jane | 32 | No | Client | Postnatal | 8 | |
Lydia | 38 | Yes | Client | Postnatal | 7 | |
Mary | 34 | No | Client | Postnatal | 9 | |
Mercy | 36 | No | Client | Postnatal | 9 | |
Rejoice | 27 | No | Client | Postnatal | 8 | |
Vera | 35 | Yes | Client | Postnatal | 7 | |
Table 3
Emergent theme and sub-themes
Theme | Sub-theme |
One | Establishing Rapport | i. Making the connection |
ii. Building a trust relationship |
Two | Journeying Together | i. Developing mutual goals |
ii. Impactful communication |
iii. Showing commitment: Going the extra mile |
iv. Building self-worth |
Three | Ending the professional relationship | i. Termination of the professional relationship |
ii. Continuity of care across the cascade |
Emergent theme and sub-themes
The findings revealed that although initial moments of the nurse-client interactions in the programme were affected by the mothers’ unexpected diagnosis of HIV in their current pregnancy, participants recounted incidents that they felt were noteworthy and enhanced their experiences in the PMTCT programme. Three main themes emerged from the analysis; Establishing Rapport, Journeying Together and Ending the professional relationship. Subthemes were developed under each theme and presented in Table 2.
Theme One: Establishing Rapport
This theme describes the initial encounter between the nurses, midwives and their mothers, and how the mothers’ positive HIV results catalysed a nurse-patient relationship between them. Two sub-themes emerged: making the connection and building trusting relationships.
• Making the connection
For most of the participants, their first encounters were at the antenatal booking when patients were assigned to the midwives for provision of perinatal care. In most instances, the relationships were mainly professional but the actual connection that set the stage for the engaging provider-patient relationships were made following the positive test results. It was evident from the narratives that, becoming aware of a positive HIV test at the same time impacted both the health providers and the clients and created an avenue for giving and receiving of support.
“She [midwife] was there even when they told me, I was positive. She held me as I cried and comforted me... then they [nurse and midwife] went with me to the pharmacy to begin my treatment.” Mercy, client
For the midwives and nurses however, the offer of care although a professional mandate, was underscored by the desire to provide the needed support to see the infected women and their families through the periods of difficulty: A participant said:
“In one instance, I sat behind my desk looking at this small girl [teenager], sitting with anxiety written all over her… I felt sad but I had to tell her she was HIV positive.” Midwife Baaba
“Although it [PMTCT service] is part of my duties as a midwife, I knew I had to put in extra effort to ensure this girl stayed… see, she was just 16 years. So, I told her, I wanted to be her friend… and she said OK.” Midwife Afua
• Building trusting relationships
From the participants stories, trusting relationships were established between the nurses and midwives and their clients in the PMTCT programme. The nurses and midwives’ maintaining patients’ confidentiality was a key indicator for the establishment of the trusting relationship. Most of the patients tested the nurses and midwives’ commitment to their needs and fully committed to the relationship when the nurses and midwives showed signs of being trustworthy .
“She [pregnant woman] told me that, she had not disclosed her status [HIV] so she does not want me to inform her sister. So, I reassured her that I will not expose her. But I realized that she was still worried... I am sure she was waiting to see if her sister will get any hint [about her status] from me… Now when she [pregnant woman] calls... she tells me, I am wonderful and when I ask her why she says that I thought you would disclose my status [to pregnant woman’s sister], a positive relationship has developed between us up till now. I know that to me and the client this is exceptional.” Midwife Afua
Another important consideration of the mothers for committing to the provider-patient relationship in the PMTCT programme was the use of positive affirmation by the health workers for the mothers’ effort of adhering to treatment and keeping all appointments
“She [community health nurse] told me how she admired my seriousness in taking my treatment to protect my child. She encouraged me and reassured me that if I continued that way, my baby would be negative. She made me feel cared for that day...” Mary, client
Being accepting and non-judgmental was a key feature that emerged from the data as essential for the building of a trusting relationship between the midwives, nurses and their clients.
“We show love to the clients and accept [them]. So, that they feel they can establish a trusting relationship with you. This makes the women open and can discuss their challenges with us by calling you or even coming to the facility just to see you. This makes them stay because they realize that they may not receive that kind of treatment elsewhere.” Community health nurse Akosua
Theme Two: Journeying together
The relationship forged between the nurses, midwives and the pregnant women evolved as the engaged in the programme; mutual goals were developed, had impactful communication and these contributed to building the mothers’ self-worth.
• Developing mutual goals
From the narratives, it was evident that interactions between the midwives, nurses and the mothers centered around developing mutual goals. These goals centered mainly on maintaining the health of the mother and preventing vertical transmission.
“… She [midwife] told me that we had to plan for the child, how we can ensure that the child will not get the disease... She told me to agree to take the drugs to reduce my viral load so that the baby will not get infected... Jane, client
“My main concern was to make sure that people did not notice that I had HIV. When I told her this, she also said it was her goal too. She then talked about the drugs and why I had to take it as she had taught me” Lydia, client
Further to this, the narratives revealed that the health workers also took ownership of the goals and this shared effort and dream was an important reason why the nurse-patient relationship evolved.
“We also planned on how to ensure the baby will not acquire the virus. That is my job, that is my goal. So, I discuss this with the mother so that they know we are in this [PMTCT] together” Midwife Yaa
• Impactful communication
For most of the participants, the opportunity to effectively explain their position on issues and actively listening to the other person in the relationship was helpful in fostering the decision of mothers to commit to the nurse-patient relationship as well as remain in programme.
“I [midwife]… get the person to understand what the condition [HIV] really is. I am able to get the person to understand... there is hope for her. So, if she is able to go by the rules especially with the medications, then she can move on. And when she accepts that, you [midwife] too it makes everything so easy for you, because she [client] knows that I am doing this for the reward I am going to get for myself and my baby. So, if she really understands what she is doing, then everything becomes so easy for you [midwife].” Midwife Araba
“The nurse who counselled me told me what we needed to do to ensure my baby was born negative [HIV]. She was specific about my role… coming for all the antenatal visits, making sure I do all the labs [investigations] and not missing [drugs] even one day. She said even though it may be difficult, we had to do it to achieve our goal.” Vera, client
Sharing the success stories in the PMTCT programme with newly diagnosed HIV positive women was an important catalyst for retention. One mother explained that the nurse sharing information about the success story of other mother-baby pairs in preventing vertical transmission was a helpful reminder to remain in care. She said:
“…She [midwife] even used other people as examples, even a nurse who tested positive in pregnancy and decided to take her treatment and now her child is 20 years and still negative… this raised my hopes up and made me desire the same thing.” Jane, client
Additionally, participants inferred that focusing communication on positivity instead of the challenges was also an important feature in the nurse-patient relationship they experienced in the PMTCT programme.
“They [nurses] will not scare you. They will speak nicely to you so that you are encouraged and gain the confidence to take care of your baby.” Vera, client
“Whenever we met, although she [client] had complaints and challenges, I always drew her attention to how far we have come in spite of all the struggles. I always made the effort to make both of us look at the cup half full, instead of half empty…” Midwife Adwuba
Gradually, the narratives of the participants became positive and filled with hope and excitement instead of despair and this impacted mothers’ decision to remain in the programme.
The relationship built fostered discussions, encouragement and the decisions about disclosure of their status to others as patients became more confident to disclose to a member of their family.
…After a while, she [mother] agreed to tell her husband about the results… Midwife Araba
• Showing commitment: Going the extra mile
From the participants’ perspectives, observing the commitment of the other person in the nurse-patient relationship to the goals set was an important factor that promoted an unwavering relationship. Constantly reminding the clients of appointments and refills were cited by some clients as a reason for retention in the programme.
“I saw that she wanted to help me. She gave me reminders of my appointments and ART refills. Because of this, I couldn’t stay home, I had to also do my part and also follow all their instructions.” Rejoice, client
For another client, the sacrifices by the staff which required going the extra mile to ensure that her concerns were addressed further fostered the nurse-patient relationship and underscored retention.
“When the Pharmacists went on two months strike nationwide... I needed a refill for my treatment and that of the baby. I had heard of the strike and knew the pharmacy was closed. About a day later, I met XXX outside the hospital, and I informed him that I needed a refill. He spoke to me nicely and reassured me that he would assist me. Later in the afternoon, he came to my shop and asked me to follow him. He opened the office and looked for my PMTCT folder and supplied the drugs. In truth, I appreciated him so much, because the folders were many, but he spent time looking for mine.” Vera, client
• Building self-worth
The analysis revealed that the relationships between the midwives and CHNs, and the mothers’ stories revealed that not being labeled by the condition in the relationship contributed to clients building their self-worth. Psychological care included the sense of acceptance, reassurance, and encouragement that some mothers received while in the programme. A mother reported that:
“She [midwife Esi] treated me as a human being and not an HIV patient... The care the midwife gave me, made me feel special. She treated me like a human being.” Jane, client
This built the mothers’ self-worth and confidence.
Theme three: Ending the professional relationship
As the mothers moved along the cascades, relationships were terminated as others were established with health professionals in the other units. This theme describes how the mothers transitioned to other relationships along the cascade while previous relationships ended.
• Continuity of care across the cascade
The analysis revealed that several nurses and midwives introduced their patients to others colleagues in subsequent units offering PMTCT services as their patients transitioned through the PMTCT cascade.
“I had already psyched her that I would not be the only person to take care of her... I had already told her that at a point in time, some people might come in…. So, I introduced her to those[CHN] at RCH [Reproductive and Child Health unit] so that when she comes, she would not have to go and explain so many things.” Midwife Araba
It was also evident that although new relationships were formed as the mothers progressed through the cascade, the initial relationships were still maintained especially by the efforts of the mothers.
“Even though I am now at postnatal clinic, I still call X [midwife] at the antenatal clinic whenever I need her. She was very good to me and treated me like a sister. So, I still keep in touch… I never go to the hospital without visiting her.” Lydia, Client
The narratives also revealed that in some units along the PMTCT cascade, where clients’ length of stay was short and interactions with health professionals were limited, staff did not link their clients to the subsequent unit.
“Yes, we need to link the labour ward with the PNC unit. I think we [labour ward staff] have to ensure continuity of care for up to some time until we are convinced that both mother and baby are doing well; that they come for their refills and the baby too is doing well...” Midwife Esi
• Termination of professional relationship
The nurse-patient relationship within the PMTCT programme ended as the mothers exited the peripartum period and enrolled in adult ART care. For several of the midwives in the labour ward, termination was not discussed with client and was abrupt.
“It is like we end contact with the patient as soon as the client delivers.” Midwife Yaa
For midwives in the antenatal clinic and the postnatal clinic however, clients were informed of the need for termination prior to the scheduled day.
“I educate them that when it gets to a point, you will leave me... so, I make them understand. I just don’t push them.” Midwife Baaba
It was also evident that for some of the participants, termination was unsuccessful as although the clients moved on to adult ART programme for services, they still reverted to their relationships within the PMTCT programme when they faced challenges while accessing care.
“I was in the counselling room one day when Madam X [client] came to me... she had missed a treatment refill appointment by a few days, and so the pharmacist had refused to serve her unless she presented a treatment supporter. After counselling her on adherence, we went together to the pharmacist,” Community health nurse Adwoa
Evidence from narratives revealed that some of the difficulties occurred because the relationships extended beyond the requirement of the PMTCT programme.
“She calls me at any time... she is so comfortable with me. And I see her in the market, she calls me and like [to say] Aunt nurse, here is your baby [Fante]. Anything with her baby, she tells me and even her life, her normal life, everything aside her condition, she tells me everything. I have bonded with her like a sister, like a relative.” Midwife Araba