EVALUATION OF IMPEDIMENTS TO PARENT-CHILD COMMUNICATION IN PAEDIATRIC PALLIATIVE CARE IN NIGERIA

CHAPTER ONE

INTRODUCTION

1.1 Background of the study

Individuals under the age of 20 represent 35% of the worldwide population and account for 40% of the population in the least-developed countries. Each year, the estimated number of children, including neonates, infants, and adolescents up to 19 years of age, requiring paediatric palliative care may reach as high as 21 million (WHO, 2018). Research indicates that nearly 2.5 million children succumb annually to significant health-related afflictions, with over 98% of these cases occurring in low- and middle-income nations (WHO, 2018; Knaul et al., 2018). Although estimates vary, it is unequivocal that there exists a significant necessity for the prevention and alleviation of suffering among children, particularly in the context of paediatric palliative care. In light of the significant and avoidable suffering experienced by children, the 2014 World Health Assembly resolution WHA67.19 on the enhancement of palliative care as an integral part of comprehensive care across the lifespan underscores that providing access to palliative care for children constitutes a “ethical responsibility of health systems” (WHO, 2018).

It is noteworthy that PPC has not been regarded as a significant focus globally (WHO, 2018). A study conducted in 2011 revealed the absence of PPC services in 65.6% of countries (Knapp et al., 2016) as referenced by WHO, (2018). In low- and middle-income countries, when services are present, they are often confined to a limited number of institutions and lack integration within the broader health care systems. A study examining palliative care provision in sub-Saharan African nations revealed that fewer than 1% of children requiring such care in Kenya received it, while the figures were under 5% in South Africa and Zimbabwe (Conor et al., 2017). The World Health Organisation characterises palliative care as the approach aimed at preventing and alleviating the suffering experienced by both adult and paediatric patients, along with their families, who are confronting the challenges posed by life-threatening illnesses (WHO, 2018). The issues encompass the physical, psychological, social, and spiritual distress experienced by patients, as well as the psychological, social, and spiritual anguish faced by their family members.

Paediatric palliative care represents an essential aspect of healthcare, focussing on the intricate needs of children facing life-limiting or life-threatening conditions, along with their families. The main objective is to enhance the quality of life for both the child and the family through symptom management, provision of psychosocial support, and fostering transparent communication among healthcare providers, patients, and their carers (Downing et al., 2018). In the realm of paediatric care, the communication between parents and children holds considerable importance, as parents are pivotal in the decision-making process and in offering emotional support to their offspring. Nonetheless, the practice of communication in paediatric palliative care frequently encounters obstacles, especially in resource-constrained environments such as Nigeria, where cultural, social, and infrastructural elements present considerable challenges.

Communication between parents and children involves the exchange of information, thoughts, feelings, and attitudes, fostering mutual understanding, trust, and cooperation (Gawinski et al., 2021). It serves a crucial function in comprehending the emotions and perspectives of children, reducing their anxiety and depression, fostering harmonious family dynamics, and enhancing family unity (Orm et al., 2021). Children facing terminal illnesses endure a prolonged journey of health challenges, where appropriate and effective communication plays a crucial role in decision-making and care planning that prioritises the child's best interests (Akard et al., 2019). Although the benefits of parent-child communication are well-documented and endorsed by various guidelines (Lopez-Vargas et al., 2019), factors such as unfavourable prognoses, challenges in addressing death-related subjects, a desire for mutual protection between parents and children, and potential adverse outcomes can result in ineffective communication between them (van der Gees et al., 2015). The dynamics of parent-child communication within the realm of paediatric palliative care have garnered significant interest, particularly from the viewpoint of the children involved. Parent-child communication is intricately connected to the needs of both the parent and the child, and it serves a crucial function in the dynamics among family members, patients, and health professionals (Son & Miller, 2023; Orm et al., 2021).

It is essential for parents to engage in dialogue with their children regarding their aspirations and choices concerning treatment and symptom management, as well as to comprehend their emotional well-being when confronted with serious health challenges (Son & Miller, 2023). It is essential for children to receive information from their parents regarding the diagnosis of the illness, its progression, treatment options, and insights from professionals (Yamaji et al., 2022). Many carers aspire to uphold a guiding role in the presence of their offspring by regulating the knowledge accessible to them. It is posited that certain detrimental factors ought to remain undisclosed to the child in order to prevent undue confusion and psychological distress (Cowfer et al., 2021; Barrett et al., 2023). A small number of parents expressed an alternative perspective, advocating for the child to be informed at a suitable moment and emphasising the importance of open communication to foster mutual trust (Aldridge et al., 2017). Children expressed a desire to be aware of any medical information that their parents might not share and to have the opportunity to engage in discussions with healthcare professionals alongside their parents (Son & Miller, 2023).

In Nigeria, the interplay of cultural beliefs and practices significantly shapes the manner in which families navigate healthcare decisions, particularly in the realm of palliative care. Numerous families in Nigeria hold the belief that it is essential to protect children from the grim truths associated with terminal illness (Iyer et al., 2014). This cautious approach might result in the child being deprived of information, potentially fostering emotional detachment and hindering the child's ability to articulate their thoughts and feelings comprehensively. Furthermore, in numerous traditional Nigerian communities, there exists a significant focus on the family as a cohesive entity, with healthcare decisions frequently being made by elders or extended family members instead of solely by the parents or the child (Adewole et al., 2015). This dynamic can further complicate the discourse between parents and children, as parents may experience limitations imposed by familial expectations and cultural prohibitions. A notable challenge to effective communication between parents and children in paediatric palliative care is the emotional weight that parents endure. Parents caring for children with terminal illnesses frequently endure significant stress, anxiety, and depression, which can hinder their capacity to partake in meaningful dialogues with their child (Ene et al., 2021). The profound emotional burden of witnessing a child endure a life-threatening illness can result in avoidance behaviours among parents. This may manifest as a reluctance to engage in conversations about the illness or its ramifications, ultimately leaving the child in a state of isolation and uncertainty regarding their condition. Research indicates that children lacking sufficient opportunities to express their fears and emotions are at a greater risk of experiencing loneliness and depression, which can further diminish their overall quality of life (Pritchard et al., 2019).

Healthcare providers in Nigeria encounter obstacles that hinder effective communication between parents and children in the realm of paediatric palliative care. The absence of focused training in palliative care for healthcare professionals frequently leads to insufficient assistance for families during these pivotal times (Oyebola et al., 2018). A significant number of healthcare professionals experience discomfort when engaging in discussions about end-of-life care with families, largely stemming from inadequate training in communication techniques and the profound emotional weight of these dialogues. As a result, parents might lack the essential direction needed to engage in meaningful conversations with their child regarding the illness, rendering them unprepared for these delicate dialogues.Furthermore, the healthcare infrastructure in Nigeria frequently falls short of adequately supporting comprehensive paediatric palliative care. The restricted availability of healthcare services, particularly in rural regions, results in numerous families encountering palliative care only after the illness has advanced considerably, thereby allowing minimal opportunity for substantial dialogue between parents and their children (Ezeonwu, 2017). Moreover, economic limitations may compel families to emphasise the expenses associated with treatment rather than the provision of emotional support, thereby exacerbating the tensions within parent-child dynamics.

The influence of religious beliefs is considerable in determining the approach of Nigerian families towards paediatric palliative care. In a society steeped in religious beliefs, numerous parents turn to spiritual interpretations for understanding illness and recovery, frequently placing their hopes in miraculous interventions instead of coming to terms with a terminal diagnosis (Agom et al., 2020). This religious perspective may obstruct transparent dialogue between parents and their offspring, as parents might refrain from addressing the topic of death, clinging to the hope of divine intervention. Consequently, children might find themselves in a perplexing situation regarding their illness and uncertain about what lies ahead, potentially impacting their psychological health adversely. Comprehending these obstacles is essential for enhancing paediatric palliative care in Nigeria and guaranteeing that children and their families obtain the necessary support during these challenging periods. Thus, this investigation is warranted.

1.2 Statement of the Problem

Effective communication between parents and children holds great importance in paediatric palliative care, as it profoundly impacts the emotional well-being of both parties and the overall quality of care delivered (Hinds et al., 2013). In Nigeria, the distinct sociocultural, economic, and healthcare environment poses considerable obstacles that hinder transparent and effective communication in these delicate situations (Ogunyemi et al., 2020). Grasping these obstacles is crucial for enhancing the quality of paediatric palliative care and guaranteeing that families obtain the necessary support during these difficult periods.

In numerous Nigerian communities, prevailing cultural norms and beliefs may obstruct meaningful communication between parents and their gravely ill children. Conventional perspectives on health, especially concerning paediatric cases, frequently result in hesitance to engage in open discussions about medical concerns. Families may harbour apprehensions that addressing the topic of mortality could inadvertently hasten its arrival (Ugochukwu et al., 2019). Moreover, the cultural focus on parental authority may inhibit children from articulating their thoughts and emotions, thereby complicating the communication dynamic (Eze et al., 2021). These obstacles can result in misinterpretations, heightened anxiety, and emotional turmoil for both parents and children, ultimately affecting the child's overall well-being.

The diverse educational backgrounds and literacy rates of parents may hinder effective communication in paediatric palliative care. Numerous carers might not possess the necessary understanding to grasp medical jargon or the subtleties of their child's condition and available treatment alternatives (Okwuosa et al., 2022). The absence of comprehension may result in sentiments of exasperation and powerlessness, hindering parents from advocating effectively for their children. Moreover, healthcare providers might unintentionally employ terminology that families find challenging to understand, thereby hindering constructive communication (Fakoya et al., 2023).

The healthcare system in Nigeria encounters various obstacles, such as limited resources, inadequate training for healthcare professionals, and the absence of standardised communication protocols in paediatric palliative care (Sola et al., 2021). A considerable number of healthcare professionals may lack training in effective communication techniques, particularly in delicate situations involving children and their families (Akintola et al., 2020). Consequently, discussions surrounding prognosis, treatment alternatives, and end-of-life care may become challenging and ineffective, resulting in families experiencing a sense of lack of support and being overwhelmed.

The emotional burden of attending to a gravely ill child may introduce further obstacles to effective communication. Parents often encounter significant stress, anxiety, and grief, which can impede their capacity to maintain open communication with their children (Harrison et al., 2019). Young individuals, conversely, might find it challenging to express their emotions regarding their health condition, resulting in silence or retreat, which adds complexity to the relationship between parent and child (Brelinsky et al., 2022). These emotional obstacles can hinder vital conversations regarding preferences, fears, and needs, which are crucial for delivering quality palliative care.

While effective communication is crucial in paediatric palliative care, there remains a notable deficiency in thorough studies that specifically explore the barriers to parent-child communication within the Nigerian context. The majority of current research emphasises adult palliative care (Dixon et al., 2018), overlooking the distinct difficulties encountered by families with paediatric patients. This gap constrains the comprehension of methods to improve communication practices that are specifically adapted to the cultural and social contexts of Nigerian families. Thus, the necessity for this investigation

1.3 Objectives of the study

The primary objective of this study is to critically evaluate the impediments to parent child communication in paediatric palliative care in Nigeria. Specific objectives of this study are to:

1. To examine the factors that influence parent child communication in paediatric palliative care in Nigeria

2. To identify the common barriers to effective communication between parents and children in pediatric palliative care settings in Nigeria

3. To propose strategies for enhancing communication between parents and their children in pediatric palliative care in Nigeria

1.4 Research Questions

The following research questions which are in line with the objectives of this study will be answered in this study:

1. 1. 1. What are the factors that influence parent child communication in paediatric palliative care in Nigeria?

      2. What are the common barriers to effective communication between parents and children in pediatric palliative care settings in Nigeria?

      3. What are the strategies for enhancing communication between parents and their children in pediatric palliative care in Nigeria?

1.5 Research Hypotheses

To determine the effectiveness of this study, the following research null hypotheses will be formulated to guide the study and it will be tested at 0.05% levels of significance.:

Ho: There are no significant factors that hinder effective communication between parents and children undergoing palliative care in Nigeria

Ha: There are significant factors that hinder effective communication between parents and children undergoing palliative care in Nigeria.

1.6 Significance of the study

The research possesses substantial importance across multiple facets, influencing a wide array of stakeholders, such as healthcare professionals, families, policymakers, and the larger community. Comprehending the obstacles to effective communication between parents and children in palliative care environments can greatly enhance family relationships during a crucial and frequently challenging period. Enhancing these communication pathways cultivates emotional connections, reduces anxiety, and assists families in managing the intricate feelings linked to serious health conditions. Enhanced communication facilitates informed decision-making and fosters mutual understanding, thereby elevating the overall quality of life for both parents and children.

Healthcare professionals hold a significant position in paediatric palliative care, and the findings from this study can provide them with essential tools to enhance communication. Recognising particular obstacles enables healthcare professionals to formulate customised approaches that tackle these challenges. Training programs and workshops can be meticulously crafted to enhance staff members' communication abilities, thereby equipping them to assist families in articulating their fears, hopes, and needs with greater transparency. This approach can result in more thorough care plans that honour the preferences and values of both the child and the family.

The results of this study provide valuable insights for those in positions of authority, guiding the creation of focused policies and initiatives aimed at improving paediatric palliative care services. Understanding the significance of effective communication, it is essential to establish policies that guarantee healthcare facilities offer resources, including counselling and training in communication skills, for both families and healthcare providers. This proactive strategy fosters the development of nurturing environments that emphasise open communication, thereby enhancing care outcomes for children facing life-limiting conditions.

Families of children receiving palliative care frequently encounter significant challenges. This research highlights the necessity for instruments and resources that enable individuals to convey their ideas with clarity and precision. Equipping families with knowledge regarding the specifics of their child's condition and the associated care procedures can significantly reduce feelings of powerlessness. Workshops or support groups that emphasise enhancing communication can empower families to articulate their concerns and emotions more openly, cultivating a sense of agency in their caregiving responsibilities.

The research further contributes to the understanding of community awareness surrounding paediatric palliative care. Enhancing understanding of the difficulties families encounter when discussing serious illness can cultivate compassion and assistance from the community. Improved comprehension among the public can foster increased engagement within the community, establishing supportive networks for families in need. The sense of community can profoundly alleviate the isolation that families frequently endure during these challenging periods.

Ultimately, the results may serve as a foundation for subsequent investigations in the field of paediatric palliative care. Recognising particular barriers to communication lays the groundwork for comprehensive investigations that delve into creative solutions. This continuous investigation has the potential to enhance the existing knowledge base focused on refining palliative care methodologies, thereby providing significant advantages to children and families in Nigeria and elsewhere.

1.7 Scope of the study

Broadly, this study focus is to critically evaluate the impediments to parent child communication in paediatric palliative care in Nigeria. Empirically, the study will discuss factors that influence parent child communication in paediatric palliative care in Nigeria, the common barriers to effective communication between parents and children in pediatric palliative care settings in Nigeria and strategies for enhancing communication between parents and their children in pediatric palliative care in Nigeria.

Geographically, the study will be carried out in National Hospital, Abuja.

1.8 Limitations of the study

During the examination, the researchers carefully examined the inherent limitations that are present in all human behaviours. One of the main challenges we faced was the lack of extensive scholarly research on the subject. A notable factor that contributed to the issue was the limited data available regarding evaluation of the impediments to parent child communication in paediatric palliative care in Nigeria. Given the task at hand, it was quite demanding to find the required materials, books, or information and organise the data, requiring a significant investment of time and effort.

In addition, the study's findings may be constrained by the small number of participants and the limited scope of the research, which mainly revolves around National Hospital, Abuja. Therefore, the findings of the study have limited practical implications, highlighting the need for further research.

In addition, the individual experienced significant constraints due to financial constraints. As a student with limited financial resources, they had to carefully navigate these constraints throughout their study. The exorbitant transportation fees at the research site proved to be a significant hindrance in meeting the financial obligations tied to travel expenses.

Furthermore, the person had a packed schedule due to their scholarly obligations, including attending lectures and participating in a range of educational pursuits.

1.9 Definition of terms

Paediatric: Pediatrics also spelled paediatrics, is the branch of medicine that involves the medical care of infants, children, adolescents, and young adults

Palliative care: Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness.

Communication: Communication is the sending and receiving of information and can be one-on-one or between groups of people, and can be face-to-face or through communication devices. Communication requires a sender, the person who initiates communication, to transfer their thoughts or encode a message.

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