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Th role of counselling to reduce parental fears and anxiety about newborn screening for sickle cell disease in Northern Ghana

Abstract

Introduction

In Ghana, about 15,000 newborn children are diagnosed to have sickle cell disease (SCD) annually. Previous studies have demonstrated that while neonatal screening coupled with early intervention reduces SCD-related morbidity and mortality, only 50–70% of screened-positive children have been successfully followed-up to receive healthcare. Gazelle point-of-care testing (POCT) device with high specificity and sensitivity may be more easily integrated into existing immunization programs in rural settings, to improve follow-up rates. This study explored views of community members and healthcare workers about the role of counselling to reduce parental fears and anxiety about newborn screening for SCD in rural Northern Ghana.

Methods

This study used qualitative research approach where 16 focus group discussions and 19 in-depth interviews were conducted with participants between April and June 2022. Purposive sampling technique was used to select participants for the interviews. The interviews were recorded with consent of participants, transcribed and coded into themes using QSR Nvivo 12 software before thematic analysis.

Results

Participants saw the need for counselling services to be provided to participants in the planned SCD screening program. They believed that effective counselling could help parents take appropriate strategies to manage children diagnosed with SCD and improve their health status. Furthermore, healthcare workers, mothers and opinion leaders held that counsellors could offer words of encouragement to parents to reduce their anxiety and fears during the screening especially, those whose children could be tested positive. They however suggested various strategies such as adequate training and positive behaviour of counsellors to ensure effective counselling process during the SCD screening program.

Conclusion

Although counselling has been described as a key component in the planned SCD screening program, adequate training to improve knowledge, counselling skills as well as positive attitude of counsellors towards parents could enhance the effectiveness of counselling services offered.

Peer Review reports

Introduction

Sickle cell disease (SCD) is an inherited disorder of haemoglobin (Hb), which occurs in any child that inherited sickle haemoglobin from the parents [1]. Sub-Saharan Africa shoulders the highest burden of the disease, with about 300,000 babies born annually with SCD-SS [2]. In Ghana for instance, about 15,000 newborn children are diagnosed to have SCD annually [3, 4].

SCD is a monogenic and multisystemic disease, characterised by haemolytic anaemia and vaso-occlusion leading to recurrent episodes of pain and chronic organ dysfunction from infarction and vessel damage [1]. People with SCD are prone to `sickling’ of the red blood cells causing blockage of smaller blood vessels and resulting in anaemia, leg ulcers, stroke and damage to various parts of the body including the kidneys, eyes and lungs [5, 6]. Furthermore, the disease significantly affects quality of life and reduces life expectancy [6, 7]. The most severe form of SCD, homozygous sickle cell anaemia (Hb SS) occurs when Hb S is inherited from both parents [8, 9]. Other genetic variants producing SCD include sickle cell haemoglobin C (SC) and two forms of sickle cell beta thalassemia and Sβ+) [9].

In Africa, it has been demonstrated that newborn screening promotes capacity building because of training provided to healthcare workers leading to the implementation of such health programs. This could provide healthcare workers with knowledge and skills to successfully organize screening programs and clinics [10, 11]. Further, screening for SCD identifies carriers, namely sickle cell traits (SCT) and other variant hemoglobin genes and parents of these children are encouraged to receive counselling to support future decisions with regards to procreation [11]. Counselling is an essential tool for effective interpersonal relationships and equitable adjustment to health issues. Again, counselling has been viewed as very unique and important, which encompasses the full range of assistance given to individuals to promote good health and wellbeing [12, 13]. Thus, counselling forms a critical component of newborn screening programs including SCD because parents of children with SCD are educated on how to promote healthy lifestyle and recognize signs necessitating immediate attention [14, 15]. It has been reported that newborn screening with appropriate counselling and follow-up significantly reduced under 5 mortalities [16]. Effective counselling must be provided in a respectful manner to individuals [17, 18].

Previous studies have demonstrated that while neonatal screening coupled with early intervention reduces SCD-related morbidity and mortality, only 50–70% of screened-positive children have been successfully received in clinics to benefit from these health interventions [19,20,21]. Gazelle point of care testing device, with high specificity and sensitivity, could be more easily integrated into existing immunization programs in rural settings in Africa, and is more likely to improve follow-up rates and care [22]. The Gazelle POCT technology was used to screen SCD in children in primary healthcare facilities in rural Northern Ghana. Prior to the implementation of the screening program, this study explored views of healthcare workers and community members about the role of counselling to reduce fears and anxiety in the SCD screening in children under 5 years in the study area.

Methods/materials

Study site

This study was conducted in the Kasena-Nankana East Municipality (KNEM) and Kasena-Nankana West District (KNWD) in the upper East Region of Ghana by the Navrongo Health Research Centre’s (NHRC). The two districts (i.e. KNEM and KNWD) cover an area of 1,675 square kilometers with a population of about 162,000 under surveillance by the Navrongo Health and Demographic Surveillance System (NHDSS) operating under the Navrongo Health Research Centre. The population is predominantly rural with subsistence farming as the main pillar of the economy in the two districts. In addition, the districts have two referral hospitals located in the capital towns of Navrongo in the KNEM and Paga in the KNWD that serves as a referral point for all the health facilities in the area. There are different types of health facilities operated and managed by the government and private individuals. There are also community-based health volunteers in the communities providing basic healthcare services to people through the supervision of professional healthcare workers.

Study design

The study employed qualitative research approach where focus group discussions (FGDs) and in-depth interviews (IDIs) were conducted with community members and healthcare workers between April and June 2022. Specifically, narrative qualitative research design was used in this study [23]. Narrative research approach allows study participants to share their views in details regarding what they know about the issue under investigation. Thus, this design was suitable in this study because it enabled participants to share their views on counselling services to reduce parental fears about newborn screening for SCD using Gazelle POCT technology in primary healthcare settings.

Study population and sampling procedures

The study population comprised mothers with children less than 5 years of age, male and female community members, opinion leaders and healthcare workers. The FGDs were conducted with community members, while the IDIs were organized with healthcare workers such as Coordinators of Newborn and Community Health and Family Planning System (CHPS), Community Health Nurses, Medical Assistants, Public Health Nurses as well as District and Regional Directors of Healthcare Services.

Purposive sampling method was used to select health facilities and participants. The NHDSS is divided into five (5) zones (i.e. Central, North, East, West and South). The East and South zones are Nankani speaking while the West and North zones are Kasem speaking areas. The Central zone is cosmopolitan, which was not included in the study. Using these demarcations, we purposively selected four health facilities in the West and East zones and conducted interviews with medical assistants and community health nurses. The other interviews with directors, public health nurses, newborn and CHPS coordinators were conducted at the district and regional levels.

Also, with support from community health volunteers working in the selected health facilities, we purposively selected community members such as opinion leaders and mothers to participate in the FGDs. Community members and healthcare workers shared their views on the role of counselling in the SCD screening program in the area.

Recruitment of research assistants and data collection techniques

Prior to launching data collection, the study team recruited four graduate-level research assistants and trained them for data collection. Research assistants were trained on rationale of the study, data collection and informed consent procedures including translating interview guides into the two main local languages (i.e. Kasem and Nankani) spoken in the study area. This was done to facilitate consistency during data collection. The interview guides were pre-tested after the training to enable the study team finalize the procedures before the actual data collection.

Data collectors visited the selected district health directorates and health facilities in the study area, introduced themselves to the district directors and facility heads before the interviews were conducted with healthcare workers. Appointments were also booked with mothers and opinion leaders including venue, time and date before the FGDs were conducted after informed consent was obtained. Questions in the interview guides touched on key thematic areas such as parents’ fear and anxiety, necessity and role of counselling, and strategies to ensure effective counselling. The interviews were recorded with the consent of participants. Research assistants were supervised by the study team during data collection to ensure that the data collection was done accurately. A total of 16 FGDs, eight with mothers and eight with community opinion leaders were conducted while 19 IDIs were conducted with healthcare workers. In each group, ten people took part in the discussions. Thus, a total of 160 people participated in the study with 80 mothers and 80 opinion leaders.

Themes development, data coding and analysis

All interviews were recorded and transcribed verbatim after repeatedly listening to the recordings. To ensure that qualitative principles of transcribing interviews were applied, different people were engaged to transcribe the audio recordings. The transcripts were reviewed by the study team to correct typographical and grammatical errors before data coding. A codebook containing main and sub-themes was developed to facilitate data coding. The codebook was developed using a combination of established categories and themes based on the original research questions and other themes that emerged from the data. These themes were developed in the Nvivo software to facilitate data coding. Also, the transcripts were prepared and imported into QSR Nvivo 12 software and coded. To ensure a fair interpretation of the data, the transcripts were independently coded by the first and second authors and validated by the seventh and last authors. Guided by the objectives of the study, the coding process involved a critical review of each transcript to identify emerging themes from the data. The two coders then met to compare their independently-identified themes. They resolved any divergence by re-reading the relevant sections of the transcripts together, and agreed on the best fit interpretation of the data.

Thematic content analysis procedure was used to analyze the data. The process of thematic content analysis means reading through textual data, identifying themes, coding the themes and then interpreting the content of the themes [24]. The analysis was done by the first and second authors and validated by all co-authors. The results were then presented as a narrative, supported with quotes from the coded data.

Results

The themes that emerged and discussed in the results included fears and concerns triggered by knowing their children have SCD, necessity of counselling, the role of counselling in the screening and strategies to ensure effective counselling.

Parental fears and concerns triggered by knowing their children have SCD

Views of participants were solicited regarding the kind of concerns parents would have knowing the SCD status of their children. Mothers (72%) and opinion leaders (65%) in the FGDs perceived that some parents could be worried if their children were tested positive for SCD. According to them, some parents would be worried that their child could die as a result of the disease and not knowing when it could happen.

R3: I think it will be disturbing me because you do not know when the child will be attacked by the sickness, which can even cause the child’s death. (FGD with under 5 mother-West Zone-01)

R5: If they tell you that your child is having the disease (referring to Sickle Cell Disease), you will be afraid and be thinking that your child is having that disease and could die. (FGD with under 5 mother-East Zone-06)

Similar sentiments were shared by the healthcare workers regarding the kind of fears and concerns parents could have if they were told that their children had SCD. According to some healthcare workers, parents may be thinking that the child could die if he/she was tested positive. Other healthcare workers (65%) perceived that some parents could be worried and would not know what could happen to the child.

The first thing that will come to their mind is that my child will die. (IDI-26 year old community health nurse-West Zone-02)

They will have fear that the child may have deformities and some may think the child is going to die. (IDI-33 year old medical assistant-East Zone-04)

Views on necessity of counselling

The majority of mothers (95%) and opinion leaders (92%) saw the need for counselling services to be provided to people during the SCD screening program in the area. They held that counselling was necessary because it would improve knowledge of parents on appropriate strategies to manage their children if they were tested positive. They added that the counselling could help parents to have better knowledge and understanding about SCD and the need for the screening exercise, which could motivate them to bring their children to be tested.

R1: Parents must be counselled so that they will have a clear understanding of the program to encourage them to bring their children for the exercise. (FGD with under 5 mother-East Zone-06)

R8: The counselling will touch on the importance of the screening and how the testing will improve our children’s conditions. The counselling will also help us know how to take care of the children. (FGD with under 5 mother-West Zone-01)

R2: The counselling is going to help parents know more about the disease. (FGD-Opinion Leader-West Zone-08)

Of the 16 healthcare workers interviewed, 81% of them said that counselling was very important in the screening exercise because the counselling would make parents accept the test results especially parents whose children could be tested positive. As one of them expressed it:

I think it is good to be counselled before testing and after testing. This will allow parents to accept the results. (IDI with public health nurse-02)

The role of counselling in reducing parents’ fear and anxiety

Both mothers and opinion leaders recognized the vital role counselling could play in reducing fears and anxiety of parents in the planned SCD screening program in the area. They perceived that counselling services could offer words of encouragement especially to parents whose children could be tested positive. All these could reduce fears and anxiety of parents. Most of these views were expressed by opinion leaders in the FGDs.

R2: The fears can be reduced if research team can get good counsellors to counsel parents whose child will have the sickle cell disease and that can reduce their fears. (FGD-Opinion Leader -East Zone-05)

R7: They should counsel them so that they will not be so hurt. If there is proper counselling the person will not worry so much. (FGD-Opinion Leader-West Zone-08)

R7: Encouraging the person through counselling for the person to have hope of living for long will help reduce parents’ fears. (FGD-Opinion Leader-East Zone-02)

Healthcare workers (76%) underscored the need for pre-counselling and especially post-counselling of parents before the results of their children were shared with them. They explained that if parents were properly counselled about the disease and also made to know that this is not a life threatened disease, it could give them hope and also reduce their fears and anxiety.

When parents are counselled to understand the disease and to also know that the condition can be managed, it will help reduce their anxiety. (IDI-director of health services-01)

The first thing that we should do is to educate parents on what the condition is all about and what could be done during the counselling stage. Counselling is key to help reduce parents’ fear about the screening. (IDI-28 year old community health nurse-East Zone-06)

Strategies to ensure effective counselling services

Perceived appropriate counselling approach

When views of mothers and opinion leaders were solicited on appropriate methods to provide counselling services to parents, 88% preferred the counselling to be done in private or one-on-one basis with parents during the screening program. According to these individuals, one-on-one counselling approach would ensure privacy of information and also facilitate good interaction between counsellors and parents. Similar views were expressed by both mothers and opinion leaders in the discussions across study zones as demonstrated in the following excerpts:

R8: I think counselling should be done one-on one so that we can have the privacy to say what we have and get answers for it. (FGD with under 5 mothers-West Zone-01)

R9: The counselling should be private and confidential. Parents whose children could be tested to have the sickle cell disease should meet one-on-one with the nurses for the counselling. (FGD with under 5 mothers-East Zone-06)

R9: Confidentiality is important in counselling so; the counselling should be one-on-one. (FGD-Opinion Leaders -West Zone-05)

R2: I think one on one counselling will be better because people will not get to know about your information. (FGD-Opinion Leaders-East Zone-08)

About51% of mothers and opinion leaders suggested that the counselling processes should involve both parents of the child and not only the mother to ensure trust.

R3: I think both the father and the mother of the child should be counselled at the same time. If you are going to counsel only the mother for her to now go and tell the father, I think the father will not believe what his wife will say. (FGD with under 5 mothers-East Zone-06)

R2: If my wife sends my child to the clinic for the test and the results turn out positive, it will be good for my wife and I to be called privately for the counselling. (FGD-Opinion Leaders- West Zone-04)

Nonetheless, 12% of participants proposed the need for general education for all parents prior to their participation in the screening exercise before private or one-on-one counselling with parents whose children could be tested positive of SCD.

R1: To me, I say, they (referring to counselors) should first call everyone and counsel. Then if anyone who is tested sickle cell positive will now be counselled privately. (FGD-Opinion Leaders-East Zone-02)

R3: They should call the whole community and educate them first and after that, individual counselling will come in if the person has the disease after the test. (FGD-Opinion Leaders-East Zone-02)

Most of the healthcare workers (90%) also supported the need for one-on-one counselling method as recommended by community members to ensure privacy of information. As one of them put it:

The best way is one on one because if you gather them and say these people are negative and these are positives, you are breaching confidentiality protocol. So, the there is need for the private counselling to be provided to parents during the screening. (IDI-28 year old community health nurse-West Zone-06)

Perceived appropriate people to provide the counselling

Regarding suitable people to be engaged on the SCD screening program to provide counselling services to parents, discussants in the FGDs held that people who had knowledge about SCD and how to manage the condition should be engaged to provide the counselling. Some of them particularly were of the view that doctors and nurses should be engaged to counsel parents since they were trained to do so.

R3: The nurses and doctors should be the people to do the counselling because they have been trained to do that. (FGD with under 5 West Zone − 01)

R5: People that have in-depth knowledge about sickle cell disease, how to prevent it and how to manage it should be involved in the counseling process. (FGD-opinion leaders -East Zone-05)

However, a participant in the FGDs with opinion leaders argued that haemoglobinopathy counsellors should be engaged to provide counselling services instead of using community health nurses because it was not their duty to do so.

R2: If I understand counselling well, an ordinary person cannot do counselling. It is not the field of a nurse to do counselling. So, you have to get professional counsellors to do the counselling. (FGD-Opinion Leader-West Zone-08)

The need for counsellors to be friendly during the counselling process and relate with people in a professional manner was also recommended to ensure effective counselling during the SCD screening program.

R7: I think those who are going to do the counselling should be friendly to the patients to make it more effective. (FGD-Opinion Leaders -East Zone-05)

R6: When you are doing the counselling, do not put on a muddy face because, when you do that, people will not be comfortable. (FGD with under 5 mothers-West Zone-06)

Discussion

The general aim of this study was to explore views of healthcare workers and community members about the role of counselling to reduce fears and anxiety of parents in the SCD screening program in children under five years of age in Northern Ghana. The study revealed the need for counselling services to be provided to parents in the SCD screening program, which could help parents take appropriate strategies to manage children diagnosed to have SCD. In addition, both healthcare workers and community members believed that counsellors could offer words of encouragement to parents to reduce their concerns in the screening exercise. Various strategies such as adequate training and positive behaviour of counsellors to ensure effective counselling process during the SCD screening program were highly recommended by participants in this study.

Community members and healthcare workers all saw the need for counselling services to be provided to parents in the SCD screening program. They believed that effective counselling could help parents to have better knowledge and understanding about SCD and also help them take appropriate strategies to manage SCD to prevent morbidity and early mortality. Healthcare workers particularly held that the counselling could help parents to accept the test results especially parents whose children could be tested positive. According to current literature, counselling is a continuous client-centered communication process that aims at helping distressed patients understand and adjust to medical or psychosocial consequences of diseases [12, 13]. It provides services, which stimulates people to develop behaviours to help them deal effectively with their health issues. Additionally, counselling is essential in health interventions that helps individuals to accept their health conditions [13]. It is therefore imperative that parents and families of children with SCD be provided appropriate counselling services for effective management of their condition, especially parents whose children could be tested to have the disease.

Views expressed by both healthcare workers, mothers and opinion leaders suggest that counselling could play an important role to reduce the fears and anxiety of parents in the SCD screening program. Apart from promoting the ethical principles and the need for parents to be provided with all the necessary information prior to allowing their children to take part in the SCD screening, participants believed that counsellors could offer words of encouragement to parents. Furthermore, the findings suggest that counselling could improve knowledge and understanding of parents about SCD and also help them come to terms with screening results. The interpretation of this finding is that patients believed that information offered to them by counsellors and healthcare professionals could improve the health conditions of their children. Therefore, it is not surprising that both healthcare workers and community members in our study expressed positive views regarding the key role counselling could play in reducing fares and concerns of parents in the SCD screening program. Healthcare workers underscored the need for both pre-counselling and post-counselling of parents before the results of their children were shared with them, which could give them hope and also reduce their fears and anxieties. According to report from earlier study, counselling is offered primarily to improve well-being of patients as well as compliance to treatment [25]. The central role of counselling is to provide benefit for patients in risk reduction. Additionally, counselling could strengthen patients and provide them with comprehensive knowledge and skills to deal with health issues, in this case the management of SCD in children [25]. It has also been noted earlier that counselling services could help patients to develop skills and confidence to improve chronic disease management [26].

Although counselling has been described as key component in managing certain chronic conditions such as SCD, there have been obvious challenges such as lack of counselling skills, heavy workload and lack of support in providing counselling services especially in resource limited environment [27]. Our study findings however point to various strategies to ensure effective counselling process in the SCD screening program. Participants in this study, both healthcare workers and community members also said that counselling should be done one- on-one with parents to ensure privacy. Community members maintained that both parents of the child should be involved in the counselling process to ensure trust between them. It is possible that opinion leaders made this suggestion for both parents to be present during the counselling to avoid confusion between parents especially on paternity of the child. Again, these suggestions are particularly important to ensure that ethical principles and rights of participants in the screening program are protected. Also understanding the causes and management of the disease, and the roles and responsibilities of parents and their extended families, could provide an important means of adjusting to any negative attitude from within the family or the community.

Community members and opinion leaders recommended the use of haemoglobinopathy counsellors who have good knowledge about SCD and how to manage the condition would be necessary in providing effective parental counselling. The need for counsellors to be friendly during the counselling process and also deal with parents in a professional manner was recommended by opinion leaders. The healthcare workers on their part called for adequate training for people who could be engaged to provide counselling services. This is consistent with a previous report suggesting the need to provide adequate training for counsellors to improve their knowledge and counselling skills [25].

Strengths and limitations

The main strength of this research is the inclusion of men and women from the main local languages (i.e. Kasem and Nankani) spoken in the area in the FGDs and healthcare workers. This allowed us to obtain a diversity of views about the screening program, which had informed the implementation design for using POCT to screen for SCD in primary healthcare settings in the area. The main limitation was that the interviews with community members were conducted in the main local languages of the study area, tape recorded, transcribed and translated into English. It is possible that some statements made in the local languages may have lost their original meaning in the English translation. Nonetheless, the interviews were transcribed by graduate research officers who are native speakers with experience in transcribing qualitative interviews. Thus, any loss of meaning during the translation was minimized. In addition, since the study used qualitative research approach, the authors were not able to quantify parental fears and anxiety.

Conclusion

The interpretation of our data suggests that both healthcare workers and community members saw the need for counselling services to be provided to parents in the SCD screening program. While community members perceived that counselling could play an important role in reducing fears and anxiety of parents through words of encouragement, healthcare workers believed that effective counselling could improve knowledge and understanding of parents about the SCD. Furthermore, healthcare workers felt that the counselling could help parents come to terms with screening results as well as their compliance with the care needed for their children. Both community members and healthcare workers said that effective counselling could help families/parents to employ appropriate strategies in the management of children with SCD to improve the quality of their health.

Addressing parental fears and anxiety, counselling not only ensures the success of the program, but it could empower parents to navigate the process with confidence and clarity. Integrating effective counselling strategies into screening initiatives may foster trust, reduce stigma, and ultimately improve health outcomes for families affected by SCD. Thus, healthcare workers and community members suggested various strategies to improve counselling services. Community members and opinion leaders recommended that counsellors who have good knowledge about SCD and how to manage the condition may be engaged to provide the counselling. The need for counsellors to be friendly and interact with parents in a professional manner was recommended particularly by opinion leaders. The healthcare workers on their part called for adequate training to improve knowledge and counselling skills as well as positive attitude of counsellors towards parents to make counselling services more effective and beneficial in the planned SCD screening program in the area.

Data availability

The data of this manuscript is available upon request by the academic editor.

Abbreviations

CHPS:

Community Health and family Planning System

FGDs:

Focus Group Discussions

Hb:

Haemoglobin

IDIs:

In-depth Interviews

KNEM:

Kasena-Nankana East Municipality

KNWD:

Kasena-Nankana West District

NHDSS:

Navrongo Health and Demographic Surveillance System

POCT:

Point of care testing

SCD:

Sickle cell Disease

SCT:

Sickle Cell Traits

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Acknowledgements

The authors would like to express their profound gratitude to all the study participants for sharing their views with the research team. We are also grateful to the research assistants (i.e Miss. Nadia Fagenatera Anuseh and Mr. Stephen Azalia) who supported the research team during data collection.

Funding

This study was part of a research collaboration grant provided by Novartis Pharma AG (grant ID: CGZX411A12402R) to Hospital for Sick Children and Navrongo Health Research Center.

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Authors and Affiliations

Authors

Contributions

L.O.A, N.L, O.E, K.M, I.O and PA. Conception OR design of the work. E.D, S.T.C Acquisition of data. E.D, S.T.C, K.M and I.O. Analyse the data. E.D, S.T.C. Software used in the work. E.D and S.T.C. Drafted the manuscript. All authors reviewed and approved the manuscript.

Corresponding author

Correspondence to Samuel T. Chatio.

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Ethics approval and consent to participate

The study protocol was approved by Ghana Health Service Ethics Review Committee and the Navrongo Health Research Centre Institutional Review Board. Written informed consent was obtained from all participants before they were interviewed. Informed consent was obtained without coercion and included information about the potential benefits and risks that might be associated with participation in the study. Also, all participants were told about the purpose and study procedures before their participation. To ensure confidentiality of information, codes were assigned to study participants and used in all study related documents.

Consent for publication

Consent was obtained from participants to publish findings resulting from the study.

Competing interests

The authors declare no competing interests.

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Duah, E., Chatio, S.T., Ababio, L.O. et al. Th role of counselling to reduce parental fears and anxiety about newborn screening for sickle cell disease in Northern Ghana. BMC Public Health 25, 2808 (2025). https://doi.org/10.1186/s12889-025-24134-9

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