Design

The study was a qualitative one, and a descriptive phenomenological approach was used to explore this phenomenon. The approach was appropriate because it was used to explore the lived experiences of different people about the phenomena with very little or no attempt to interpret them [13, 14]. The approach is also useful for investigating different opinions of human beings and their interpretation of lived experiences in their regular state [15]. The design was appropriate for this study since little information is known on the effects of trauma-related amputations in children. Information gathered from a qualitative descriptive study are extensive descriptions of participants which are mostly expressed in words, this information provides better understanding to the phenomenon understudy [14]. This approach is useful, in the Ghanaian setting where there is paucity of literature on trauma-related amputations among children.

Study setting and site

Our study was conducted in a tertiary facility in Ghana, Komfo Anokye Teaching Hospital, one of the five teaching hospitals in Ghana, which It is located in Kumasi, Ashanti Region of Ghana. It serves as the major referral center accessible to all regions that share a border with Ashanti Region of Ghana. The Trauma and Orthopaedic Directorate of the Komfo Anokye Teaching Hospital (KATH) was the source for the recruitments of the participants used for the study. Information on caregivers was taken from the trauma registry of the directorate.

Population

The target population for this study was the immediate informal caregivers of children who had undergone amputations with traumatic indications at the Trauma and Orthopedic Directorate of a tertiary facility in Kumasi, Ashanti Region of Ghana. Informal caregivers are family caregivers who are offering unpaid services and taking care of amputee children

Inclusion and exclusion criteria

The selection of participants was based on the following inclusion criteria. 1) Caregivers of children below 18years who had undergone amputations due to traumatic indications. 2) Caregivers whose children had been discharged from the facility. 3) Caregivers who gave consent to take part in the study. 4) Caregivers who were aged 18years and above.

Caregivers of children with trauma-related amputations who had been discharged for less than 2 months as well as caregivers of children with amputation who were still on admission were excluded from this study. These caregivers were excluded because they might not have had enough exposure and experience to share.

Sample size and sampling

Purposive sampling technique was used to select caregivers of children who had undergone amputations due to trauma. The children of these caregivers had received treatment at the tertiary facility and discharged home. The researcher purposively requested from the trauma registry details of children below 18years who had undergone amputation due to traumatic indication from the year 2013 to the year 2022 at the facility. After the 10^th interview, the data reached saturation. Data saturation is reached in qualitative study when enough information has been gathered in a study and no new information emerges during coding and analysis of data [16, 17].

Data collection instrument

A semi-structured interview guide was used to collect the data. This guide was formulated in alignment with the study’s objectives and the pertinent literature on the subject matter. The interview guide had two (2) main sections. Section A focused on the demographic and professional background of participants. Section B had three (3) main questions that focused on information that expressed the effects of amputation on the caregiver.

Data collection procedure

Prior to commencing the study, a representative from the trauma registry was introduced to us, by the Head of Trauma and Orthopedic Directorate on the 13^th of April, 2023. Data on children who had undergone amputation between the year 2013 to 2022 was retrieved. All children with amputations, as a result of trauma were selected. The names of the children and the address and phone numbers of caregivers were received and contacted for the study. The data collection tool was piloted with two similar participants in the same facility. This validation process aimed to ascertain that the tool effectively prompted the requisite inquiries to solicit responses pertinent to the research inquiries.

Data was gathered from caregivers from the 24^th April, to 20th May, 2023. Interviews were conducted using a semi-structured interview guide at a convenient place and time of each participant. Eight (8) face-to-face interviews were conducted in the homes of the caregivers, while two (2) were conducted at the facility. Interviews that were conducted at the facility, took place in an office at the disaster block of the facility. The researcher explained the aim of the study to caregivers and informed them that participation was entirely voluntary and consent was sought for participation and the recording of interviews. Participants were notified in the consent form that, despite signing it, they retained the option to withdraw from participation at any point. Additionally, they were informed that the collected data would solely serve the study’s purposes. Furthermore, they were made aware that only the researcher and her team would have access to the data. On average, each interview lasted 40 minutes, with variations in duration attributed to factors such as the child’s age and the impact of the experience on the caregiver. For each interview, the local dialect (Twi) was employed since the majority of participants were more proficient in Twi. Permission was obtained from participants to tape-record the interviews, which were subsequently translated into English. Throughout the interviews, the researcher also documented non-verbal expressions in a field notebook. Following each interview, the first author transcribed all audiotapes word for word for further analysis.

Ethical considerations

The Institutional Review Board of Komfo Anokye Teaching Hospital gave ethical approval with approval number KATH IRB/AP/13/23 for the conduct of this study. Approval was also given by the ethical Committee on Human Research, Publication and Ethics (CHRPE) of Kwame Nkrumah University of Science and Technology (CHRPE/AP/219/23). Official permission was sought from the Trauma and Orthopedics Directorate of Komfo Anokye Teaching Hospital and the Head of the Trauma Registry with an introductory letter from the School of Nursing, College of Health, Kwame Nkrumah University of Science and Technology. Participants were approached to obtain their informed consent, with clear explanations provided regarding the study’s purpose, objectives, and potential risks and benefits. Participant records were securely stored and accessible only to the researcher and her team, ensuring confidentiality.

Trustworthiness

In qualitative research, trustworthiness refers to the capacity to ascertain whether the researcher’s conclusions accurately reflect the experiences of the participants [18]. Confirmability, credibility, transferability, and dependability are the key elements of trustworthiness in qualitative studies [18].

To maintain credibility, the researcher enlisted participants who met specific inclusion criteria and could offer a diverse range of information on the phenomenon. Following each interview, member checks were conducted, allowing the researcher to validate participants’ responses before drawing conclusions from the data. Gathering feedback from participants and consolidating it was crucial in accurately and clearly presenting their narratives. Additionally, each interview was transcribed verbatim and coded on the same day it was conducted, aiding the researcher in correlating responses with the study’s objectives. Dependability/Reliability refers to whether or not the study can be duplicated by other researchers [19]. In order to ensure reliability, the researcher provided detailed description of the research design and the procedures used for collecting data, as well as analysing data in the final report. The research methodology was extensively described as it was applied to the study. Additionally, in ensuring reliability, the same interview guide, tape recorder, and analysis process were used for the interviews or data collected from all participants in the study. Field documentation, including field notes and verbal and nonverbal exchanges, were reviewed with the supervisor by the researcher as well.

Confirmability in qualitative study is the ability of the researcher to be impartial. Unpacking personal bias can be accomplished by bracketing interview. To ensure confirmability, the researcher made sure all conclusions made from the study were based on the exact experiences and thoughts of the participants and not the opinions of the researcher. A clear coding schema was used to identify codes and patterns [18].

Transferability is the extent to which findings from a study can be applied in other settings [20]. The researcher ensured detailed descriptions of research setting, methodology and background of the participants used for the study. Transcripts and analysed documents were kept for purpose of references. This will make it easy for other researchers to extend conclusions from this study unto other similar studies.

Data analysis

All audios were transcribed verbatim immediately after every interview by the lead author and a trained research assistant. The transcripts were double checked by PAB and AAT. Thematic analysis technique was used to analyse the interview data manually simultaneously. The analysis involved seven phases: Researchers, PAB and VMD read through the transcripts many times to familiarize with the findings. All transcripts were read line by line, and some significant statements were noted. A coding strategy developed was by PAB and BAB to formulate meaning to responses to the interview questions. Differences in the themes were resolved by involving another researcher, PD.

Identified codes were clustered into themes and subthemes based on the research objectives and the paradigm model of the experiences of family carers of patients providing care. They were later fine-tuned with continuous analysis by PAB, VMD and BAB. Finally, engaging quotes were selected and linked with the research topic and literature discussed in this study. Only participants who met the inclusion criteria were recruited, which helped the researcher maintain the study’s credibility. Also, to ensure that the interpreted data matched exactly what had been communicated during the interviews, PAB, AAT, made sure each participant received feedback from the interviews that confirmed what participants had said during each interview conducted.

Participants

A sample of 10caregivers were recruited into the study. Participants were aged between 21-58years. Participants were made of five (5) females who were mothers, four (4) males who were fathers and uncles. Nine (9) of the participants had informal employment, whereas one (1) had formal employment. Table 1 below is a summary of the background characteristics of participants of the study.

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Table 1. Background characteristics of participants.

https://doi.org/10.1371/journal.pone.0313980.t001

Main findings

Three major themes that emerged from the study were daily activities/social life, finances, and mental health and emotions. The major themes and their subthemes are summarized in the Table 2 below.

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Table 2. Themes and Sub-themes generated.

https://doi.org/10.1371/journal.pone.0313980.t002

Daily life activities/social life

Caregivers’ daily routines are significantly influenced by their children’s conditions, leading to substantial changes in their lifestyles. These effects were experienced with restricted movement of the caregiver and physical exhaustion.

In the Ghanaian settings where there is very limited disability-friendly accommodations, caregivers are confined to their homes to provide constant assistance to their children. Even though in 2006, Ghana passed the National disability Law, Act 715, lack of advocacy, implementation and supervision, these policies on accessibility has been largely overlooked [21]. Many public places in Ghana are built with little or no consideration for persons with disability, therefore caregivers resort to being in their homes with their children all the time. Basic tasks like maintaining personal hygiene become physically demanding, necessitating caregivers to lift their children for bathing. This caregiving responsibility consumes their time, preventing them from engaging in other activities and social events. These are consistent with previous studies that emphasizes the caregiving burden of social strain [22]. Furthermore, caregivers often experience physical exhaustion from their role. When children go through amputation, they become solely dependent on their caregivers. Participants described physical exhaustion from the amount of energy used in assisting their children to perform activities of daily living. This finding was confirmed in several studies from previous authors [22–26] highlighting the need to promote personal resources and reduce exhaustion in caregivers [22, 25, 26].

Finances

Finances of caregivers of amputees were identified to have been largely affected by amputation. Amputation of children led to financial loss from high cost of treatment and earning loss of the caregiver.

Participants narrated that they provided financial support to cover for most treatment cost since there is limited coverage of amputation treatment by the National Health Insurance Scheme (NHIS). In Ghana, a significant percentage of hospital expenses is not covered by the National Health Insurance Scheme [27]. This situation puts a lot of stress on the finances of the caregivers of the children. The high cost of treatment involved, cost of medications, cost of procedures and investigations as well as rehabilitation services.

Participants also cited that they also provided financial assistance for other non-treatment costs such as transportation for access to medical care. Additionally, caregivers were burdened to cover long distances with their children for hospital reviews and consultations due to limited orthopedic and rehabilitation services in Ghanaian hospitals thus increasing the financial burden of caregivers. This corroborates the conclusions drawn by [28] regarding the insufficiency of orthopedic specialist services and trauma care in peripheral facilities across Ghana.

Study findings also showed that, children are typically hospitalized for about three months averagely. Considering most participants did not have formal employment, they suffered financial earning losses as they are unable to attend to their daily businesses that fetch them income. This is consistent with findings from [29] highlighting opportunity cost of caregivers. Some caregivers expressed distress over having to dip into their life savings to settle hospital bills, while others resorted to borrowing money. Upon discharge, caregivers could not immediately return to work, and upon doing so, they had to adjust their schedules to accommodate their children’s needs, leading to decreased productivity and a reduction in income. This echoes findings from a study [30] regarding the financial impact on parents of children with amputations [28–30].

Mental health and emotions

Caregivers of amputee children in Ghana experience significant emotional and mental health challenges. The feeling of guilt and sadness was experience by all caregivers. They struggle to comprehend why such circumstances have befallen their families and worry about their children’s future and societal integration, especially considering the stigma surrounding disabilities in the country. The discrimination faced by amputee children, particularly among their peers, adds to caregivers’ distress, leading them to sometimes cry in private over their children’s pain and rejection. Furthermore, the lack of disability-friendly infrastructure in public places like schools and playgrounds exacerbates their concerns about their children’s ability to function in society. These worries place a significant psychological strain on caregivers, as observed in various studies, highlighting the importance of addressing the mental health needs of caregivers in similar situations [6, 25]

Intermittent emotional breakdowns manifested as feelings of apathy, sadness, guilt, social exclusion, depression, and disappointment. Some caregivers found themselves blaming their own perceived carelessness and irresponsibility. They expressed regret over not having adequate time to fully accept their children’s conditions. This array of negative emotions experienced by caregivers of individuals with disabilities is echoed by other researchers [7, 25, 31].

The study further explored coping mechanism by caregivers which discovered existing coping strategies and adaptive strategies. These strategies included self-encouragement, disengaging from stressful thoughts as well as believing in God. Participants also described community and family support. Our findings correspond with earlier research on coping mechanisms of caregivers [32, 33].

Strength and limitation of the study

Using the phenomenological approach, the study was able to gain enough insights on the experiences of caregivers. The primary constraint of this research stems from its exclusive reliance on participant reports, which lacked independent verification. Moreover, participants’ experiences might have been shaped by additional factors, such as their socio-economic background. Nevertheless, despite these constraints, the results of this study retain significance and offer valuable insights into how trauma-related amputations in children impact their caregivers.

Implication for research and clinical practice

The findings of this study suggested that trauma-related amputations in children have an enormous effect on the caregivers of these children. Caregivers find themselves obligated to remain behind to take care of their children primarily due to the lack of supportive infrastructure for enabling independence among individuals with disabilities. Consequently, research ought to prioritize proposing policies and establishing infrastructure to enhance the quality of life for people with disabilities and alleviate the caregiving burden. Additionally, cost of healthcare put a toll on the finances of caregivers therefore policies should be made for orthopaedic and rehabilitation services do be decentralized under captured the National Health Insurance Scheme. The study underscores the importance of providing psychological and social assistance to caregivers, alongside addressing their healthcare requirements. Offering counseling services and social support would be advantageous in enhancing the mental well-being of caregivers.