Journal of Pediatric Nursing xxx (xxxx) xxx Contents lists available at ScienceDirect Journal of Pediatric Nursing journal homepage: www.pediatricnursing.org Fathers' experiences of caring for children living with cerebral palsy: A qualitative study in a low resourced socioeconomic context, Ghana Lucy Selorm Bentum, (MPhil, RN) a, Lillian Akorfa Ohene, (PhD, RN) a,*, Veronica Adwoa Agyare, (PhD©, RN) b, Luke Laari, (PhD, RN) a, Menford Owusu Ampomah, (PhD, RN) c a Department of Public Health Nursing, University of Ghana, Legon, P.O Box LG 43, Accra, Ghana b SDA Nursing & Midwifery Training College, Kwadaso, Kumasi, Ghana c Department of Adult Health Nursing, University of Ghana, Legon, P.O Box LG 43, Accra, Ghana A R T I C L E I N F O A B S T R A C T Keywords: Background: In Ghana, little is known about fathers' experiences caring for children with cerebral palsy. Cerebral palsy Purpose: The purpose of this study is to explore a. the caregiving demand and burden on fathers of children with Care burden cerebral palsy and b. describe the caregiving consequences and coping strategies of fathers of children with Coping cerebral palsy. Fathers Ghana Design and methods: The study utilized an exploratory, descriptive qualitative approach with a sample size of fifteen fathers purposively selected. The study used a semi-structured interview guide to conduct a one-on-one interview with participants. The analysis performed was thematic and content analysis. Results: The results revealed complexities of care demand and burden; thus, meeting the child's needs resulted in physical and mental exhaustion, frequent hospital visits, and substantial financial implications for fathers. Conclusions: We conclude that the family, particularly fathers, need support to embrace the challenging care roles as parents to children with cerebral palsy. It is evident that caring for children is mainly reserved for mothers in the African context. However, the demanding nature of care for a child with a developmental disability requires the involvement of both parents to meet the child's care needs and reduce the caregiver's care burden. Practice implications: Health professionals, particularly nurses must initiate and advocate for fathers' active participation in daily childcare. Tailored supportive care for families with children with disabilities in sub- Saharan Africa is required. Background estimated at 1 in 300 births (Graham et al., 2016). It is believed that the severe forms of CP recorded in low and middle-income countries could Cerebral Palsy (CP) is the most frequent childhood neurological and be attributed to risk factors such as poor or delayed diagnosis and lack of motor impairment, which occurs in approximately 1.5 to 2.5 per 1000 rehabilitation services and education (Jahan, Muhit, Al Imam, et al., live births globally (Blair et al., 2018). According to 2010 estimates from 2021; Jahan, Muhit, Hardianto, et al., 2021; Karim et al., 2022). the Centers for Disease Control and Prevention (CDC), CP affects around The impact of CP on the family depends on the degree of disability 1 in 345 children (3 per 1000 8-year-old children) in the United States with associated characteristics (McIntyre et al., 2011). For example, CP (Baio, 2014). A similar report by Cerebral Palsy Alliance Research is a permanent physical impairment caused by damage to the developing Foundation indicates that every 20 h, a child is born in Australia with brain and motor impairment, varying from mild to severe (Smithers- cerebral palsy (Cerebral Palsy Alliance Research Foundation, 2023). In Sheedy et al., 2014). It could range from a hand's weakness to nearly no Africa, the prevalence of CP is thought to be 2–10 per 1000 live births voluntary movement. These features are mainly physical and cognitive (Donald et al., 2014; El-Tallawy et al., 2014; Korzeniewski et al., 2018). functional limitations (Downs et al., 2018) and behavioral problems Specifically, Uganda has nearly 3 in 1000 children with CP (Kakooza- (Weber et al., 2016), such as poor neck control and motor coordination, Mwesige et al., 2015), while Ghana's case of children with CP is stiffness of arms, aggressiveness, inability to recollect information and * Corresponding author. E-mail address: lohene@ug.edu.gh (L.A. Ohene). https://doi.org/10.1016/j.pedn.2023.07.019 Received 25 January 2023; Received in revised form 25 July 2023; Accepted 26 July 2023 0882-5963/© 2023 Elsevier Inc. All rights reserved. Please cite this article as: Lucy Selorm Bentum et al., Journal of Pediatric Nursing, https://doi.org/10.1016/j.pedn.2023.07.019 L.S. Bentum et al. J o u r n a l o f P e d i a t r i c N u r sing xxx (xxxx) xxx communicate, and drooling. People with severe physical disabilities et al., 2004). could need care 24 h of the day. Caring becomes quite complex when the child is entirely dependent on the caregiver (Ribeiro et al., 2016; Yakubu Study setting & Schutte, 2018). Previous studies have shown that parents of disabled children The study was conducted at a military facility, one of the largest experience stress due to issues like family and societal disruption, specialist hospitals in the capital city, Accra, Ghana. The hospital pro- weariness, financial hardships, guilt, and parenting discomfort (Graham vides a wide range of services to the public. It is also a training insti- et al., 2016; Lee, 2013; Nketsia et al., 2019; Obembe et al., 2019). For tution for health professionals from a basic professional level to a example, parents of children with cerebral palsy experience tiredness on specialist grade. Participants for the study were recruited from the Pe- many social, psychological, and financial levels. Inadequate support diatric Outpatient Department. from families and society is one of the social difficulties that parents of children with CP face (Nketsia et al., 2019). There are also psychological Sampling and recruitment of participants effects, such as anxiety about being rejected by friends and family. Due Purposive sampling was employed in this study. Before the recruit- to the high cost of the ailment's treatment and the difficulty in having ment, researchers interacted with the healthcare workers at the insurance coverage, families with children who have this condition face Neurological clinic and explained the purpose of the study and the in- significant financial hardships (Lee et al., 2019). Inadequate social clusion and exclusion criteria to them. The study's inclusion criteria support systems and, the economic difficulties of poverty, additional included a father aged 18 years and above with a medically diagnosed costs associated with meeting the child's requirements are additional child with CP. The father should have spent at least one year with their sources of stress (Graham et al., 2016; Irwin et al., 2019). child. Any father with behavioral and communication difficulties were In sub-Saharan Africa, the dominance of the patriarchal systems excluded. It ensured that appropriate participants were identified and usually suggests similar conventional family patterns exist in families of recruited. All participants were screened based on the inclusion criteria “normal” developing children and families of children with CP (Naami, of the study. Fifteen fathers who cared for their children with CP for over 2015). This suggests that mothers do most of the work in parenting a a year consented to participate in the study. These fathers have enough child, particularly as the primary caregiver. Women or mothers stay experience to share the phenomenon for in-depth understanding. The home to nurture the children while the men keep jobs to provide fathers were approached one-on-one after being provided care and financial support to the family (Poeze, 2019). Consequently, fathers are through the nurses at the clinic. primarily absent or poorly involved in direct physical caregiving to the child with CP. Mothers get overwhelmed with other home chores and Data collection procedure may not fully attend to the child's needs with CP (Dambi et al., 2015; Interviews were conducted at the convenience of the participants in a Harmon et al., 2023; Singogo et al., 2015). Maternal stress and quiet conducive space. Participants who could read and comprehend depression signs are significantly connected with child behavior diffi- English were provided with an information sheet on the purpose and culties (Nketsia et al., 2019), suggesting that the mother's inadequate confines of the study. The information sheet was read to participants care could jeopardize the child's health with CP. who could not read. Participants were allowed to ask questions for Little is known about the father's caregiver experiences in Ghana clarification before signing or thumb-printing the consent forms. Par- (Appelbaum & Smolowitz, 2012), as most studies focused on mothers as ticipants were offered one consent form to keep. All participants signed caregivers. This study, therefore, explored the experiences of fathers the consent form voluntarily. caring for children with CP to gain an understanding of their burden, A semi-structured interview guide was used to elicit information coping abilities, and health outcomes. Using the caregiving process and from the participants. Some questions were (1) Kindly share your ex- caregiver burden among the pediatric population (Raina et al., 2004) as periences about the burden of caring for your child. (2) Please describe a guiding model, two objectives guided the study. Thus, a. To explore the how you cope with caring for your child. The questions had probes. caregiving demand and burden on fathers of children with cerebral palsy, b. However, the researchers engaged in further questioning based on the Describe the caregiving consequences and coping strategies of fathers of responses from the participants. Each interview lasted between 45 and children with cerebral palsy. 60 min. The information gathered was managed for confidentiality and privacy. Design and methods Data analysis An exploratory, descriptive qualitative approach (Polit & Beck, The audio-recorded data collected were transcribed verbatim and 2008) was employed to gain insight into the fathers' burden and coping checked for completeness by the researchers listening to the audio re- strategies in caring for their children with CP in a resource-limited cordings and reading the transcripts. A deductive analysis approach was context in Ghana. We used the conceptual model Caregiving Process adopted by Raina et al. (2004) conceptual model on Caregiving Process and Caregiver Burden among Pediatric Population (Raina et al., 2004) as and Caregiver Burden among Pediatrics Population. Based on the a guiding framework to understand the phenomenon. The model ac- manageable size of the data, the analysis was done manually without knowledges that caring for a child is a normal phenomenon. However, software. Braun and Clark's (2006) approach to thematic analysis was caring for a child with permanent or extended functional limitations can applied to data analysis. Braun and Clark's (2006) approach to Thematic be stressful and impact the caregiver's physical and psychological analysis was applied to data analysis. Individually, the researchers read wellbeing. each transcript to familiarize themselves with the experiences the fa- The concepts and construct of the Caregiving Process and Caregiver thers shared. Behaviors that identify with the concepts of the model Burden include the background and context, child characteristics, caregiver were labeled; at the same time, other codes were identified based on the strain and stress(psychological), intrapsychic factors, coping factors, and content of the data. Similar codes were categorized into potential outcomes. The model illustrates that the caregiver's background, such as themes with associated quotes grouped. The themes were reviewed by educational level and economic status, is directly linked with care and the researchers and mapped out. The identified themes were compared stress. At the same time, the child's characteristics based on the severity with the conceptual model to ensure that it resonates with the Care- of the disability can also lead to stress. This psychological stress will giving Process and Caregiver Burden constructs. invariably impact the health of the caregiver, in this case, the father, depending on the intrapsychic factors and coping strategies employed in Methodological rigor surmounting the stresses the caregiver (father) may encounter (Raina The following principles of rigor were employed, credibility, e2 L.S. Bentum et al. J o u r n a l o f P e d i a t r i c N u r sing xxx (xxxx) xxx transferability, transferability, and confirmability (Korstjens & Moser, Table 2 2018). The strategies offered were prolonged engagement, where par- Fathers caring for children with cerebral palsy: care demand and burden, fathers' ticipants were provided enough time to respond to questions and share health outcomes and coping strategies. their experiences. Member checking was also done, and findings were Research aim Themes Subthemes returned to participants to confirm the ideas were captured appropri- Fathers' experiences of caring for 1. Care demand and • Physical care ately. Thick descriptions of interpretations and responses were per- children living with cerebral burden burden formed while an audit trail was kept on all the processes employed palsy • Cost implications during the study. • Social isolation • Stigma 2. Coping strategies • Social support Ethics • Positive family Ethical approval was sought from the Institutional Review Board of functioning 37 Military Hospital's Institutional Review Board (37MH-IRB IPN/ • Managing personal MAST/430/2020), and consent was granted by the hospital manage- stress ment, who serves as gatekeepers of the institution. Each participant 3. Fathers' poor • Poor physical health outcomes health signed a consent form after comprehending the information sheet and • Poor psychological asked questions for clarification where necessary. Participants were health made aware of the availability of a clinical psychologist during the interaction. The psychologist was to provide services for emotionally burdened fathers who needed help. None of the participants opted for Care demand and burden the services of the clinical psychologist. During the interview, partici- pants who emotionally broke down were offered the space to express The findings identified that the severity of the disability of children their emotions. with CP determined their level of dependency on caregivers. The chil- dren experiencing CP could not perform most of the basic self-care Findings functions. Thus, parents mostly have the burden of providing complex care to their children to meet their child's care demands. As a result, fathers in this study report the physical, economic, and social burdens emanating from the care they provided. Participants demographic characteristics Physical care burden Table 1 presents fifteen fathers, aged between 32 and 51 years, with The father's physical care struggles were enormous, which included different ethnic backgrounds were interviewed. All the fathers were lifting and carrying the child and performing activities of daily living married except for one who was divorced. Three married fathers lived such as bathing, feeding, and toileting care. The significant physical separately from their spouses because of job-related demands. Those burden experienced was lifting and carrying the child, primarily as the fathers mostly visited on weekends. Most fathers had two to five chil- child's weight and height increased with age. Excessive lifting and dren, including a child with CP. Ten children with CP were below five moving without the proper body mechanics can lead to waist pains and years of age, with five children between ages 6–11. All participants posture problems, as evident in the fathers' narratives. Some fathers in worked in various positions and attained some formal education except this study reported that the total dependency of their children required for one. their constant presence to assist them. “I always carry him everywhere I go…. even when you are tired, you still Three thematic findings must carry him” F2. “It is a burden, and it takes much energy carrying her around because Table 2 presents the three thematic areas and nine subthemes iden- now she is becoming heavy and heavier” F7. tified from the participant's interviews. The themes were care demand The fathers cautioned that special skills are required when caring for and burden, fathers' poor health outcomes, and coping strategies. Below are the child's daily needs because some children are very aggressive. the descriptions of the themes, subthemes, and associated quotes. Sometimes they exert much energy to restrain the child physically. “I struggle with feeding him, he will not stay in one place, and he will be struggling and turning his neck. So, we had to exert force on him sometimes; you must know how to feed him; otherwise, you end up putting the food in his Table 1 Demographic Characteristics of Participants. No. Age (Yrs) Tribe Marital Status No. of Children Age Child (Yrs) Profession Highest Education F1 32 Ewe Married not living together 3 5 Soldier High School certificate F2 37 Fante Married 2 3 Accountant/ Banker Degree F3 40 Bono Married 2 5 Chartered Accountant Degree F4 51 Ewe Married 3 7 Teacher Degree F5 36 Ewe Married not living together 2 4 Police officer High School certificate F6 51 Ewe Married 2 5 Driver Form 4 F7 40 Grusi – Kasim Married not living together 2 5 Trader Tertiary F8 36 Ewe Married 2 1 Teacher Degree F9 43 Nzema Married 2 11 Accountant Postgraduate F10 37 Ga Married 2 8 Sales consultant High school F11 40 Adangme Married 3 6 Driver No Formal Education F12 50 Akuapem Married 5 5 Driver Form 4 F13 42 Ewe Married 2 5 Receptionist Tertiary F14 37 Ewe Married 3 2 School administrator Postgraduate Diploma F15 44 Akan Divorced 3 9 Carpenter High school e3 L.S. Bentum et al. J o u r n a l o f P e d i a t r i c N u r sing xxx (xxxx) xxx nose.” F6. extended families because they have a child with CP. Their families “When you take him to the bath, he is very aggressive; he will be throwing never visited or supported them. his arm the way the water is pouring on him; if you do not pay careful “In terms of a helping hand, we do not get it from family; the family is not attention, he can easily get hurt” F3. ready to help; they keep giving excuses. Even during our times at the hospital, no family member has come to support” F8. Cost implications The severity of the stigma was such that some participants reported According to all the fathers in this study, caring for a child with CP that their businesses were affected. For example, a father narrated that requires enormous sums of money, which drain the family's financial he had a small convenience store where he sold items. However, because resources. The cost of drugs, special diet, sessions on physiotherapy, and of the child's condition, whenever he receives a customer and sees the assistive devices, among other costs fathers had to bear. This is because child, they leave without purchasing any item. most men in the African context assume the primary responsibility of I have opened a little grocery shop where my wife sells stuff. But because providing for the family's financial needs. In cases where there is a of the child's condition, when she even gets a customer, and they see the child's disability of a family member, one of the parents, mainly the mother, condition, it makes them leave. Other community members in similar busi- stops work to stay home to provide care to the sick. These understanding nesses use our child's condition as a negative advertisement against us, so compounds the cash inflow in the family, thereby increasing the finan- people don't buy from us” F12. cial burden on fathers. According to some of the fathers, the gazes from onlookers when “We go to the physiotherapy clinic twice a month and sometimes four a they step out of the house are evident and stigmatizing. month. The way he is, you cannot sit on a commercial bus. So, imagine If you want to sit in it then, we have to buy a seat because you cannot sit by Fathers' poor health outcomes somebody while your child is struggling. So, you need to pay for a bus seat for him” F6. Almost all the fathers who participated in this study reported adverse “The dieticians also prescribe special diets, which are all expensive” F8. physical and psychological health outcomes. Social isolation Poor physical health The fathers narrated that having a child with CP seems like an end to Most fathers reported daily physical exhaustion because of care- all social engagements. For example, most of them said they had stopped giving. Several of them said they had developed chronic lower back attending social gatherings such as weddings, church, funerals, parties, pains over the years due to their child's constant lifting and carrying. or visiting friends due to the constant supervision of their CP child. They complained of physical exhaustion and inadequate rest and sleep. Consequently, the fathers detached themselves from socialization to “Normally, at times, I carry her. Because of her weight now, she is keep up with the child's care needs. Some deliberately disengage from becoming heavy. My waist, I feel these chronic pains in my waist and back” socialization due to the discrimination meted out to them and their F7. children. “I am always tired and sleepy. I sleep when I even get onto my car to A father also narrated how he felt so traumatized when his child's work” F8. school attendant refused to feed him. “This discrimination is inappropriate Most fathers complained that they had lost physical intimacy with for a voiceless child who depends on an adult for his livelihood,” he said. The their spouses. A few of the fathers attributed the intimacy loss to low narrative of this father sends the signal that his child was particularly sexual drive or libido since the birth of their child. isolated and neglected due to the difficulties related to his feeding. “I do not have sexual urges like before; I felt it was the intimacy that “Last time he went to school, the teacher did not feed him all day. When brought about this situation. So, I ask myself why I should go into that again; my wife asked about it, she said she gave the food to him to eat by himself. psychologically, I am not there. The stress is so much” F8. To some of the Meanwhile, she knows the boy cannot eat by himself. The teacher did not fathers, the loss of sexual drive was due to both physical and psycho- bother to help him eat the food; she just left him like that since morning, even logical consequences of the duties of caring. without water” F5. According to some fathers, their paid jobs were the only social Poor psychological health interaction place. However, not all participants related to their work- The fathers described their psychological health as emotionally place as a source of socialization. Few of them attended church traumatic and hopeless. According to them, they battled psychologically occasionally. with the fear of the unknown future for their children living with CP. “Many social functions that we used to attend were affected, so we no They were emotionally overwhelmed with daily feelings of empathy for longer attend any social gatherings. The only social gathering we sent him was the child. Their thoughts were mainly filled with how the child could the church” F9. improve. “Apart from work, I am unable to go anywhere. She has become familiar “You will see your child struggle all the time. It is painful” F14. with and attached to me, so if I am to go somewhere without her, then it “I cannot predict the future; her education is the most important thing. I becomes a problem. She starts to cry when I leave the house. That is a major want her to improve before she moves to the next class, but since there is no problem for me, and so I am unable to go anywhere” F12. improvement, I keep repeating her in the same class. Until she can speak, that is when I will know the steps ahead” F1. Stigma Some fathers felt their world had halted, and they could no longer It was revealed that people's attitudes toward a child with CP plan as long as the child lived. Others felt embarrassed to be seen with a insinuated some form of stigma. Fathers recounted stigma from either disabled child. external family or people in their local communities. This was evidenced “It is embarrassing telling people that you have this kind of child; I would as parents observed that other parents openly stopped their children not feel okay telling people about it. I feel so bad for having a child of that from going near the child with CP. Some healthy children also exhibited kind, you know, in the sight of my friends and families, my firstborn is like tendencies to bully children with CP. One father said, “As a parent, you that. His behavior is odd; he would turn his neck some ways and then the way need to be mentally tough” to manage any form of discrimination acts the saliva flows, so during those periods, I feel so ashamed of carrying him when they must go out with the CP child. outside” F5. “Sometimes you will go out, and a child would like to play with him, and “I do not feel so confident. The world has crashed on me like plans have the other mothers will move their kids away. People mock or ridicule him” F9. been stuck, like I cannot make any major plans due to the situation. Yes, like a A father recounted that he and his family were neglected by their stagnated state” F8. e4 L.S. Bentum et al. J o u r n a l o f P e d i a t r i c N u r sing xxx (xxxx) xxx The fathers were traumatized by having a child with CP and Most fathers mentioned that the sick child's siblings were supported expressed regret for getting married. Some also attributed having CP to by the care. In this study context, siblings were the immediate source of early childbirth after marriage. play and socialization for children with CP. “I used to think a lot concerning the boy. Sometimes, my mind is carried “Well, I am now okay because he plays with his sister. When the sister is away, and my wife must touch me before I return to myself. I am going not in a good mood, he goes around and plays with her and feeds her” F7. through trauma because of this. Though I regretted giving birth early when I Few fathers said they did not always enjoy spouses' support, but got married, I should have waited for some three years before we started marital conflicts precipitated unmet needs of both the father and the sick making a baby; maybe this thing would have passed us; that kind of child we child. “It was most difficult and disappointing because my woman was al- gave birth should have passed over us. We should not have given birth to him” ways agitating and never appreciative of my support. So, all the time we were F5. engaged in petty quarrels” F13. “To be frank, I will say I regretted even entering into the marriage, but you cannot give the blame to anybody” F13. Managing personal stress In managing the stress of caring for a child with CP, the fathers in this Coping strategies study adopted different ways unique to the individual. Mostly, the fa- thers prioritized their stress over family stress management. Some This finding revealed the resources available to fathers and how periodically practiced diversional therapies such as listening to music much they maximized the resources to function effectively in their and enjoying nature. These activities help maintain their phycological caregiving roles. Fathers explored several coping strategies as identified sanity and relaxation. in this study. Their coping strategies included religious practices such as “Normally, when it happens like this, I do not allow myself to be stressed; I praying to God. Some exercised hope for a cure ignored negative com- play music, I go out, I have a walk, and go to the park to release all this ments (avoiding stress), maintained an optimistic view, and suppressed pressure on me” F7. negative feelings. Others pretended to ignore the child's presence and Some of them mentioned that they consciously stopped worrying focused on their other healthy siblings to derive transient joy. The about the child; this was to prevent sending negative emotions to their presence of family, friends, and neighbors also enhanced their coping spouses, so they could cope better. This meant suppressing emotions and abilities. The following sections give an account of detailed descriptions putting up appearances for positive energy. of how some of these strategies were narrated. “I do not want to worry about certain things because if those things start worrying me, it will also worry the mom because I have to be the man [being Social support strong in the Ghanaian context]. If you are found being sad, how do you want In most instances, the fathers expected support from their extended the people around you to be? When you are downcast, and your spirit is families, friends, and neighbors. The support was in the form of financial down, definitely the people around you their spirit will be down you will help and physical presence to support the family when the child gets into worry them as well” F10. hospital admissions. According to some, families and friends were Through self-care, other fathers maintained a positive view while helpful during challenging moments. This made the family feel loved avoiding and suppressing negative feelings and comments. However, it and cherished. was not easy for these fathers to experience some form of temporal “When the seizure happened, and I was not around, a friend just came in relief. to help. The first night that it occurred, about four people from the neigh- “When the whole thing started, I tried to have a positive view of the whole borhood came to stay with us at the hospital” F4. issue” F8. Only a few participants reported support from medical and clinical Few of the fathers did cope by accepting the situation and bracing staff, particularly nurses, doctors, and private foundations. themselves, but they were of hope that God could grant them a miracle. Along the line, there was one foundation we came along with; they were This kept them at peace with the care of the child. around to support and do their best. Even the support from the hospital has One great strategy is that I believe in miracles. God can do anything. Even been great. I had never encountered it before, and at a point, we did not have if the situation does not change, this is the reality. I have come to terms with to pay for anything because doctors and nurses also supported us financially. the situation on the ground. Because even doctors tell us there is nothing they It is so relieving” F8. can do. So, I have come to accept that this is the condition, and we can only Fathers enjoyed support from their immediate family members. do our best. I think that is one of the ways we have adopted” F8. “But I have my sister and my wife's brother's son with me, so he normally “It has been tough, but I realized this is the challenge, so I must brace up to carries him around when he is free” F6. face it. So, I have psyched my mind to endure whatever comes my way. I have “My mother-in-law also comes every weekend because of the baby, and just braced up to the task with the help of God to overcome all the challenges” most of the time, she sends money to take care of him and some of the hospital F14. bills” F2. However, in one instance, a father had abandoned his child with CP, who is his youngest son, which he narrated as; Positive family functioning “A man said he can cure the child, and so I should bring him; he said he Spousal support was the foundation of family cohesion and func- has cured a similar illness before, and so he can cure him of this sickness. tioning. Most fathers mentioned that their wives' committed care for the Someone came all the way to cure the child, but he refused to bring the child, sick child helped the family to keep up its functions. Siblings interacting so after that, I made up my mind not to bother myself about anything that had with the child with CP was helpful. The fathers expressed that the care to do with the child except the elder ones. As for the older ones, they are my burden shared among family members reduced the negative impact. responsibility, so I cater to them. But the youngest one, no” F15. “We [father and spouse] both understand each other; we assist each other. When my wife is to go out, she leaves him at home with me. I know it is Discussion my responsibility, so I have to take care of him, feed him, babysit, and do those things” F10. The study extensively explored the demands and burdens on fathers “I always pray for long life for my wife; even If I am not in the house, she caring for children with CP. The needs and responsibilities were pre- takes good care of them. The mother is so helpful. She does not even allow dominantly physical, psychological, social, and economic. The physical herself to be dirty and is always neat. She ensures that she is always there to burden was derived based on the degree of disability where the child had give her food when she is supposed to eat. So as for the mother. So as for the a loss of motor function and coordination, inability to talk, comprehend, mother, I always congratulate her for what she is doing for our child” F7. and recollect, as well as hyperactivity and inappropriate behavior like e5 L.S. Bentum et al. J o u r n a l o f P e d i a t r i c N u r sing xxx (xxxx) xxx excessive crying. The fathers' experiences of physical discomforts such as When FCC is well implemented, it helps fathers to know that their waist pains, headaches, back pains, exhaustion, and frequent ill health families are being well cared for, resulting in contentment with care. have been widely reported in the literature (Lee et al., 2019; Nimbalkar et al., 2014; Terzi & Tan, 2016). However, according to the literature, back pain is the chief physical pain reported in Africa (Patel et al., 2017). Limitations This could probably result from the cultural approach to carrying chil- dren in some parts of Africa, where assistive devices (adaptable strollers) This study is one of the few studies on fathers as family caregivers are not routinely used for carrying children as in Western countries from the Ghanaian context. A limitation of the study was the inability to (Dogbe et al., 2022). provide some fundamental interventions, such as education and coun- The economic implications on fathers in this current study were seling sessions, as strategies to relieve fathers' stress and burden. It was enormous, with little to no external support. Studies allude that care for also apparent that most of the fathers needed financial and other sup- children with CP is expensive (Tonmukayakul et al., 2018; Umar et al., port, which was beyond the scope of this study. Future research should 2020). The cost of care spans from the child's basic needs to special consider interventional strategies to assist fathers and family caregivers education, constant transportation for medical treatment (Kyeremateng in meeting some of their primary care needs. et al., 2019), and specific nutritional needs. For example, Jahan, Muhit, Al Imam, et al. (2021), Jahan, Muhit, Hardianto, et al. (2021) argue that Implications different levels of function, the capacity to feed by mouth, and tolerance for various food types and textures hamper nutrition in children with CP. Caring for children is mainly reserved for mothers in the African These translate into the high cost of meeting the nutritional needs as context. However, the demanding nature of care for a child with a caregivers must consider the type, texture, and concentration of food or developmental disability requires the involvement of both parents to formula and any fluid supplementation, vitamin, and mineral supple- meet the child's care needs and reduce the caregiver's care burden. mentation. Also, the presence of a child with disabilities makes it chal- Health professionals must advocate for active fathers' participation in lenging for fathers to cater to the basic needs of the other family daily childcare, particularly in Africa. Families of children with dis- members, as in most cases, their female spouses may be unemployed and abilities require funding through a social support system. Based on the supporting the child's care at home (Kyeremateng et al., 2019). unique care needs of children with CP, periodic parental competence The informal social support system is primarily non-existent due to assessments will be required to identify needs and support systems. Also, the consequences of stigma-related issues. Generally, stigma concerns a comprehensive healthcare system may consider regular medical caregivers caring for children with CP (Kassah et al., 2014; Naami, 2015; screening for parents and family caregivers of children with CP to assess Opoku et al., 2018). Typically, as evidenced in the findings, the fathers and improve their overall health and quality of life. were embarrassed to inform friends and families about their children's medical conditions. In instances where family members were aware, some were not ready to help or visit the family. According to McNally Conclusions and Mannan (2013), children with CP experience discrimination from parents preventing their children from playing with CP children, staring, As much as Ghanaian society is concerned, parents are solely pointing fingers, and laughing at them. Social stigma compounded their responsible for the basic and medical care of children with disabilities worries and psychological stress, which impacted the fathers, therefore, such as CP. Parenting a child with CP in the sociocultural context of their isolation from social activities. Avoidance is the only means of Ghana attracts negative public sentiments and behaviors such as coping with such acts (Mavi et al., 2021; Nimbalkar et al., 2014) and discrimination, social isolation, and stigma. This study further reports keeping the child at home. the childcare demand and burden on fathers who care for children with Caregivers adopt several coping strategies to deal with physical CP. Parents, especially fathers, need education and awareness of living exhaustion and psychological stress. Some use acceptance of a child's with a condition associated with physical, social, and intellectual dis- condition (Silva et al., 2015), avoidance, prayers, and solace in God abilities. A tailored support system should include the self-care needs of (Mavi et al., 2021; Nimbalkar et al., 2014). Others also control negative the parents, especially the primary caregiver, to ensure they are less emotions such as crying, sadness, anger, and helplessness as coping physically and psychologically burdened. It is also essential to explore strategies to maintain positive views to deal with stresses from caring for holistic support systems both formally and informally to cater to the a child with CP (Olwit et al., 2018). Parents support each other to cater needs of families with children living with CP. to the child's needs with CP and other family members. Family func- tioning influences the family's situation, more importantly when a Authors' contributions family needs to cope with a debilitating disease. Thus, healthy family functioning plays a valuable and essential role in having a healthy LSB and LAO conceptualized the study. LSB conducted all interviews, family lifestyle (Schroeder, 2014). and all authors (LSB, LAO, VAA, LL, and MOA) participated in the data In the literature on support systems for families of children with CP, analysis. VAA produced the initial draft, and all the authors took turns nurses form one of the core networks of professional groups that advo- reviewing and finalizing the final draft. cate for the health and wellbeing of the children and their primary carers (Polita & Tacla, 2014). For example, nurses have positively contributed Ethics approval to families' psychological and emotional wellbeing by promoting a Family-Centered Care (FCC) approach to medical and rehabilitation Ethics approval was gained from the Institutional Review Board of 37 intervention services (King et al., 2004). The Ghanaian nurses have not Military Hospital's Institutional Review Board (37MH-IRB IPN/MAST/ fully operationalized the family-centered care concept yet (Ohene et al., 430/2020). 2020). Introducing the FCC approach to care services for children with Informed consent to participate in the study was obtained from all CP could be an excellent way to start, as this will provide psychological participants. support to the families of children with CP in Ghana. It is also essential All methods were carried out by relevant guidelines and regulations. that special attention is paid to fathers' involvement in childcare, as evidence shows that even within the concept of FCC, nurses pay less Consent for publication attention to fathers (Khajeh et al., 2017) as they are often perceived as secondary caregivers instead of primary caregivers (Buek et al., 2021). Not applicable to this study. e6 L.S. Bentum et al. J o u r n a l o f P e d i a t r i c N u r sing xxx (xxxx) xxx Funding King, S., Teplicky, R., King, G., & Rosenbaum, P. (2004). Family-centered service for children with cerebral palsy and their families: A review of the literature. Seminars in Pediatric Neurology, 11(1), 78–86. This study had no external funding. Self-funded. Korstjens, I., & Moser, A. (2018). Series: Practical guidance to qualitative research. Part 4: Trustworthiness and publishing. The European Journal of General Practice, 24(1), Declaration of Competing Interest 120–124. Korzeniewski, S. J., Slaughter, J., Lenski, M., Haak, P., & Paneth, N. (2018). The complex aetiology of cerebral palsy. Nature Reviews Neurology, 14(9), 528–543. The authors declare that they have no competing interests. Kyeremateng, J. D. A., Edusei, A., Dogbe, J. A., Opoku, M. P., Nketsia, W., Hammond, C., & Afriyie, S. A. (2019). Experiences of primary caregivers of children with cerebral Data availability palsy across the trajectory of diagnoses in Ghana. African Journal of Disability, 8, 1–11. https://doi.org/10.4102/ajod.v8i0.577. Lee, J. (2013). Maternal stress, well-being, and impaired sleep in mothers of children The datasets generated and analyzed during the study are available with developmental disabilities: A literature review. Research in Developmental from the corresponding author upon reasonable request. Disabilities, 34(11), 4255–4273. https://doi.org/10.1016/j.ridd.2013.09.008. Lee, M. H., Matthews, A. K., & Park, C. (2019). 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