Study design

The qualitative research design using the interpretive phenomenological approach was applied to capture unique lived experiences of caregivers of children with NDDs. This approach allows for unearthing phenomena from the perspective of how people interpret and attribute meaning to experiences, which largely influence their existence [53–55]. It also enriches understanding of meaning, terms of existence through referential associations by way of uncovering and disclosing experiences that may not easily resurface [56], taking advantage of the common social reality as experienced by a group of people to construct meaningful totalities out of the scattered events [57]. To enhance the rigour of the design, we applied bracketing, recognising that the first author is a parent of a child with an NDD, while serving as a professional and a researcher in the field. Bracketing followed personal and transpersonal reflection and reflexivity [58], constantly discussing the research process (data collection and analysis) with the co-researcher (second-named author), a health care professional with extensive expertise in disability studies. This allowed for the process of thinking together, transcending personal boundaries and producing a single thinking process [59]. The insider view worked as a strength worth adopting, serving as a source of additional insights and clarifications in the research process, increasing and solidifying the scope of validity, yet remaining faithful to participants’ accounts.

Study population and sampling strategy

The study population consisted of the primary caregivers of children with NDDs in three districts—Lusaka, Kafue and Chongwe in Lusaka Province of Zambia. We operationalised primary caregiver as the person responsible for the day-to-day decision-making and care of the child. The caregiver participants for this study were purposively recruited by trained habilitation workers from Cheshire Homes Society of Zambia (CHSZ) between 19^th and 27^th January, 2023. CHSZ is an organisation that uses community-based approaches in child habilitation of underprivileged poor communities. CHSZ implemented a programme initially referred to as Get to Know Cerebral Palsy (GTKCP), built on the evidence of the value of self-help groups to improve maternal and child health outcomes. This programme was later expanded to include other NDDs and was renamed as “Ubuntu: working together with families of children with developmental disabilities,” and can be accessed at (https://www.ubuntu-hub.org/). The programme enables caregivers to start an empowerment ‘journey’ as soon as possible after the child’s diagnosis. Through duo facilitated sessions, a health worker and a champion mother (caregiver of a child with an NDD) were trained in the programme to complement strengths in working with groups of caregivers (10 per group). The model uses a participatory approach, emphasising adult learning principles, and caregivers sharing experiences and reflections. This allowed caregivers to identify, prioritise problems and choose ways to solve these problems together, whileensuring hands-on practice with the children. The programme covers a total of 12 topics (i.e., know your child, positioning, eating and drinking, learning to move, communicating, play, everyday activities, togetherness and belonging, and our community) with a desired timeframe of one topic per week. Inclusion criteria considered primary caregivers of children with a confirmed NDD diagnosis, aged 0–14 years at the time of data collection.

Following the project design of one focus group discussion (FGD) per district, we also applied convenient sampling to recruit a total of twenty-five (25) caregivers (8–9 per group) to participate in a single session of FGD. These FGD groups were largely homogeneous in socio-economic status, primarily because CHSZ serves underserved poor communities. Participant distribution included eighteen mothers, five grandmothers and two fathers, giving rich accounts of a father’s experience as primary caregivers. Group variation observed, particularly in age and cultural backgrounds, enriched sessions with intergenerational perspectives of NDDs.

Table 1 shows the general caregiver and family characteristics. These demographics show generally lower socio-economic parameters following level of education, income and occupation (with only 3), obtaining consistent monthly income through employment.

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Table 1. Caregiver and family demographics.

https://doi.org/10.1371/journal.pone.0335402.t001

Table 2 shows the child’s mean age of 8 years, ranging from 1 to 14 years. The majority of the children were male (19), and only a handful (7) from the Chongwe district attended school. The most reported disability was cerebral palsy (12), comorbidities of CP and epilepsy (9), CP and down syndrome (2), autism (3), hydrocephalus and intellectual disability (2) and spina bifida and intellectual disability (1). All children presented some level of functional difficulties, including mobility, partial visual and hearing, talking (receptive and expressive language), self-feeding, feeding, bathing and dressing that was mostly assisted.

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Table 2. Child demographics.

https://doi.org/10.1371/journal.pone.0335402.t002

Data collection

We collected data using the FGD method. Each FGD commenced after obtaining written informed consent from all participants for participation, taking notes and audio-recording. FGD sessions were conducted from neutral places within the area where caregivers routinely gathered for activities with CHSZ (Lusaka—school/clinic combined facility, Chongwe—school and Kafue—clinic). All sessions were co-facilitated (TCK as Main Moderator and MBC as Assistant Moderator). Sessions were structured to uphold confidentiality, encourage participation through the use of a local language (Cinyanja) and required code-switching between English and Cinyanja for both facilitators and participants. We used predetermined short, open-ended, non-threatening questions to elicit responses reflecting caregivers’ experiences [53,60–62], followed by probes to navigate deeper insights. In addition to the audio recordings of FDG1, FDG2 and FDG3, which lasted 166, 162 and 158 minutes respectively, we took hand-written field notes, particularly capturing nonverbal interactions of the sessions. The audio records were transcribed into clearly typed wording, including all observed non-verbal expressions. We observed that data saturation was reached by the third interview session, as indicated by the recurrence of comparable thematic patterns in caregivers’ accounts.

Rigour and trustworthiness

The researchers ensured the study information was accurate by safeguarding the rigour and trustworthiness through the inclusion of confirmability, credibility, dependability and transferability [54,61,62]. The study’s credibility was enhanced by methods that ensured authentic data and interpretation. Prolonged participant engagement-built rapport and trust, while peer debriefing with co-authors provided critical feedback on methodology and interpretations [63,64]. To enhance transferability, the study detailed the research context, participants, sampling strategy and study setting. Dependability was ensured through meticulous documentation, maintaining an audit trail of data collection, analysis, and decision-making processes, ensuring transparency and replicability [63,64]. A code-recode strategy was used to confirm interpretation consistency. Confirmability was achieved by grounding findings in data, avoiding researcher bias. The audit trail included raw data, such as interview transcripts and field notes, evidencing the methodology. Reflexivity was employed, prompting researchers to examine their subjectivity and its influence [63,64].

Data analysis

Thematic analysis was utilised for the analysis. Through this method, we searched for repeated patterns, particularly experiences, thoughts and behaviours within the data [65,66]. Thematic analysis offers an opportunity to focus on participants’ meanings and experiences by gaining insights into the internal and external reality of caregiving experiences to support the development of knowledge about reality. Additionally, using thematic analysis accentuates the social, cultural, and structural contexts influencing experiences, facilitating knowledge as constructed through interactions between researchers and the research participants, revealing meanings that are socially constructed [67]. To analyse the data, the inductive approach was specifically applied to identify latent “themes” reflecting patterned responses and or meanings derived from the data [66] using the six-step process of 1) familiarisation of raw data; 2) generation of coding framework 3) identifying themes and patterns 4) mapping themes reviewed against the data 5) verification and validation of themes 6) extraction of participant quotes, narratives, reporting and data representation.

Ethical considerations

The study obtained ethical approval from the research ethics committee at the University of Zambia, under the IORG No. 0005376, HSSREC IRB No. 00006464 and approval reference No. HSSREC: 2022-DEC-015. All the principles of ethics in research were observed during the study, including the provision of information concerning the study and the obtaining of consent in a language well understood by caregivers before and during FGDs [54,62].

Theme 1: Knowledge and caring skills

Caregivers identified knowledge on NDDs as the foremost anchor for caregiving, leveraging understanding as the channel for child support and course of action. To caregivers, knowledge empowers action and is instrumental for care decisions. Notwithstanding the significance of NDDs knowledge on caring skills, we generally found limited NDDs knowledge among caregivers, with few knowing a little more than others. While nearly everyone could describe NDDs simply as a disability, only six of the twenty-five participants, one or two in each discussion group could clearly explain causes, name their child’s specific diagnosis, and detail both pharmacological and non-pharmacological care regimen. All caregivers reported to depend on clinicians for information, albeit their understanding remaining narrow. To the caregivers, confronting an NDD for the first time, required heavy reliance on professionals for both information and day-to-day guidance. However, many caregivers appeared to be discontent with the limited and “unsure” information that clinicians provided. Solemnly, caregivers shared, “they are the doctors, they went to school, learned about these things and are qualified, that is why they are working” (father, rural). Caregivers’ recollection of NDDs information provided by health professionals was more about differential patterns (slowness) of development that the child will experience than explanations of why. “For me, I was only told that my child will not grow like other children, that’s all what the doctor said, I went out with a lot of questions” (mother, urban). From the data, we observed that caregivers’ difficulties (e.g., illiteracy) in retaining and recalling information about NDDs could be a plausible explanation of the gap in knowledge. To this effect, caregivers relied on behavioural descriptors of the child’s struggles (e.g., does not sit, walk, talk, etc.). In the same vein, we also found that lack of knowledge, coupled with deeply rooted cultural beliefs, family/community advise and desperation for solutions, led caregivers to seek answers from traditional and religious healers. Many of these experiences entail practising “scary” rituals in the hope that the evil surrounding the child disappears, restoring the child to normality. One narrated, “you cannot think straight, you just go with what people tell you because you have no grounding of what is going on, all you want is your child to be well” (mother, urban). Another shared, … “I was told to catch a live fly, kill it and mix with goat poop, and use the concoction on the incisions that I made on my son’s knees to enable him to walk” (mother, rural).

It was clear from the results that the lack of knowledge affected caregiving. “Maybe we do not know what to do, because for me, I have been following what we are taught by different organizations, but I do not see any change. My child is 13 years old now but he still cannot sit in one place, he even gets lost, maybe I just do not know how to help him, you can help me” (mother, urban). Another said, “we do not know what to do to help our children grow and do things independently, even sitting, walking, playing, or talking, these are challenges” (grandmother, urban). One caregiver, speaking with evident regret, said that because she lacked the necessary caregiving skills, her sole routine was to take her child outside each morning for a brief moment of sunlight before bringing the child back indoors. By contrast, another caregiver shared skill-enhancing activities despite the limited knowledge, “when it’s morning, I take my child outside the house so that he can see different things. Then, where his friends are, I place him in a dish with a blanket inside so that he can be happy to watch his friends play. Then I also take a plate with stones and put the stones in front of him because he never used to be able to grip anything…. so, he would keep attempting to pick the stones and this child of mine, now manages to pick food from his plate to feed himself” (mother, urban). Throughout the discussions, we observed caregiver readiness and commitment to adopt care systems that translate into developmental gains targeted at fostering child independence.

Theme 2: Accessing rehabilitation services

The full utilisation of rehabilitative services was viewed as a way to enrich the caregiving experience. Caregivers appreciated the indispensable function of rehabilitation services, which, without doubt, was designed to ease the caregiving experience. From the narrations, caregivers who consistently used rehabilitation services reported child improvements. Despite the benefits of rehabilitation services, caregivers’ experiences centre on limited or non-existent services at local health facilities and community spaces. This is in spite of the children being in dire need of such services as physio, occupational and speech therapies. Other factors affecting access to rehabilitation services included constraints in personnel at facilities, specialised services, pharmacological options and long distances to facilities. Long distances with non-affordability of assistive devices such as wheelchairs hampered access to local and specialised health facilities. One caregiver said, “my child has grown, he is 14 years old, I am not able to carry him on my back and walk to the clinic or hospital where my child is usually referred to. I have not been able to purchase a wheelchair to help me with movements, I cannot afford it” (mother, rural). Long distances and a lack of finances subjected children to inconsistent access to medical attention and rehabilitation services, albeit higher vulnerability to illnesses. Additionally, caregivers reported longer waiting times at facilities that hindered service completion.

Similarly, caregiver experiences with educational services were appalling, “schools refuse to accept our children on the premise that they do not have resource teachers trained in special education” (mother, rural). Caregivers showed misgivings concerning schools’ capability and empathy to care for children, especially in the absence of self-care skills like toileting and classified children as developmentally “young” and “not ready for school”. “I did not go back to the school, the teacher can just be troubling my child, so it is better he is with me since I know how to handle him” (mother, rural). Consequently, caregivers reported that their concerns were never heard, “even if we talk, who are we that they can listen to us” (grandmother, rural). Caregivers feel inadequate to pursue office bearers to ensure that their children benefit from social services as provided in legally binding frameworks and policies. As such, caregivers’ call for enhancing caregiving entails the establishment of community spaces where rehabilitation programmes can be consistently conducted, especially when caregivers are trained.

Theme 3: Empathy

Caregivers emphasized the role of “empathy”, rendered in the local language as “Chisoni”, helps them accept their child’s condition and cultivates both strength and resilience. During discussion sessions, we carefully distinguished “Chisoni” from “Chifundo”, a term meaning sympathy or pity. To enhance caregiving, empathy from family, community and professionals was perceived as a way for caregivers to strengthen caregiving efforts and openly allow their children to interact in community spaces.

Theme 4: Thriving together

Caregivers clearly shared that having and caring for a child with an NDD was the most daunting, unimaginable, loneliest and difficult of tasks for anyone to experience. However, caregivers recognised how shared reality and mutual experiences created the base for resilience and thriving together in caregiving. Caregivers reported finding solace in community groups where sharing experiences of similar difficulties and successes was a treasured opportunity. These interactions were identified as the beacon of strength for caregivers, who were once directionless, largely isolated and absorbed in self-pity regarding the children’s life course. Caregiver lives were full of shame, sadness, loneliness, despair, stress, worry, and inadequacy. With an unsupportive social environment, experiences of solidarity and collective experiences made a difference for caregivers who expressed sentiments like, “I thought I was alone”, “I have a place to belong where my child will be valued and treasured,” (mother, rural), “these conditions are common, it’s not witchcraft” (grandmother, rural). To many caregivers, thriving together places responsibility on the support the community provides to collectively and proactively engage with one another to foster childcare. Thriving together bestows hope in the lives of caregivers as a ray of light amidst dark experiences. Through these community interactions, caregivers have experienced growth, personal development, and information, and through shared realities have become better representatives of their children. Caregivers can now speak openly about their children’s disabilities and extend open arms to those with new diagnoses. “I am glad that I was connected to this group which is helping me to healthily deal with overwhelming family and community attitudes towards disability. I no longer feel alone, I have a community, and they have me. I offer what I was offered more so to newcomers because I know exactly how it feels to be isolated and forcibly put in a dark space by people you thought would be there no matter what” (mother, urban). Another shared, “I have learnt how to speak for my child. In my community, they used to shame my child, and I did not know what to do or say, I would cry and just leave them. But now everyone knows they cannot go free if they say mean words to my child. When I hear them, I follow them. Even when they are children, I go to talk to them and their parents. Through this group, I strongly advocate for my child, to an extent that people in my community are now seeing him like a human being” (mother, rural). Caregivers thriving together has enriched and practically changed perception about disabilities and NDDs, “it rebuilds your life. I have seen the way I just handle the people when they look at my child, even when they do not say anything. Previously, I would be hurt, but now I educate them because today it is me, next it will be another person in the community” (mother, rural).