Rehabilitation for children with cerebral palsy in a lower‐middle income country: A qualitative phenomenological study

Abstract

Aim

To examine the persistent barriers and facilitators to rehabilitation uptake among children with cerebral palsy (CP) in rural Bangladesh, with focus on engagement in therapy and self‐management, and beyond the context of attendance.

Method

This qualitative phenomenological study was conducted in four subdistricts of Sirajganj, Bangladesh. In‐depth interviews were conducted with caregivers of children with CP registered in the Bangladesh CP Register and rehabilitation professionals recruited purposively from Sustainable Model of eARly intervention and Telerehabilitation for children with Cerebral Palsy (SMART‐CP) centres. Interviews were transcribed, translated, and analysed thematically using an inductive approach.

Results

Between November and December 2022, 45 caregivers and eight rehabilitation professionals were interviewed. Three key themes emerged: (1) financial and logistical resources, including poverty, transport difficulties, and competing demands; (2) emotional burden, intensified by social stigma and negative family attitudes, and caregiver loss of hope in adequately supporting their child; (3) self‐efficacy, where caregiver education, coaching, and belief in therapy facilitated engagement. Local, affordable services, family and peer support, and community awareness further enabled rehabilitation uptake, which varied across families and over time.

Interpretation

Children with CP and their caregivers in rural Bangladesh face persistent barriers to accessing rehabilitation. Interventions that enhance local service provision, staff training, and caregiver support may improve rehabilitation engagement and health outcomes. Enhanced livelihood support and expanded training opportunities may further strengthen rehabilitation uptake.

Short abstract

This original article is commented by Katangwe‐Chirwa on pages 1334–1335 of this issue.

Abbreviations

LMIC

low‐ and middle‐income country

SMART‐CP

Sustainable Model of eARly intervention and Telerehabilitation for children with Cerebral Palsy

What this paper adds.

• Barriers to rehabilitation uptake are complex, persistent, and context‐dependent.

• Engagement strategies must address financial, logistical, and emotional barriers, alongside caregiver self‐efficacy.

• Low‐cost local services, support networks, and caregiver coaching are important enablers.

• Enhanced livelihood support and expanded training opportunities may further strengthen rehabilitation uptake.

Cerebral palsy (CP) is an early‐onset lifelong neurodevelopmental condition characterized by limitations in activity because of impaired development of movement and posture, often presenting as spasticity, dystonia, choreoathetosis, or ataxia. ¹ CP results from maldevelopment or injury to the fetal or infant brain that is non‐degenerative, although its manifestations may change with age, and is frequently accompanied by additional impairments affecting other areas of development and daily functioning. ¹ Children with CP often require multidisciplinary care; our understanding of effective strategies to promote functional improvement and help children reach their developmental potential is gradually evolving. This progress is guided by emerging insights across several domains, including motor skill acquisition, pain management, sleep, feeding, and communication. ² Access to early intervention and practice of active, goal‐directed tasks, based on real‐life situations, are considered key to optimizing motor development in children with CP. ² Lack of access to these services could lead to increased risk of additional conditions, low quality of life, and reduced survival probability. ³ The risks of low quality of life extend to caregivers, with increasing caregiver strain associated with child pain, ⁴ unaddressed feeding issues, ⁵ and behavioural difficulties. ⁶

In low‐ and middle‐income countries (LMICs) such as Bangladesh, the burden of CP is 2 to 3 times higher than reported in high‐income countries. ⁷ Delayed diagnosis and lack of rehabilitation services further exacerbate this situation, leaving most children vulnerable to severe functional impairment and low quality of life. Evidence from Bangladesh demonstrates that community‐based early intervention and rehabilitation programmes can substantially improve motor function and communication among children with CP in rural areas. ⁸ Similar programmes, such as Ubuntu in Uganda ⁹ and Juntos in Brazil, ¹⁰ have also been acceptable and feasible in low‐resource settings.

Despite the need and proven effectiveness, access to rehabilitation services is still low among children with CP in rural areas of Bangladesh. Recent data suggest that nearly half of children with CP in rural areas have never accessed rehabilitation services, with nearly twice as many children having severe motor disability (Gross Motor Function Classification System levels IV and V). ¹¹ Structural constraints are a major contributor, with an estimated seven rehabilitation units available per 1 million people and only 6% of these located in rural areas, where about 77% of the population resides. ¹² In addition, shortages of trained rehabilitation professionals, high out‐of‐pocket costs, long travel distances, and limited awareness among caregivers about the benefits of early intervention further hinder service uptake. ¹³ These challenges are compounded by broader social determinants such as poverty, low parental education, and inadequate transport infrastructure, all of which contribute to persistently low use of rehabilitation services for children with CP in Bangladesh.

Meaningful health care uptake extends beyond the ability to attend appointments. The concept of requiring active engagement is key to effective service use, ¹⁴ including collaborative relationships between parents and health care professionals, belief in intervention value and goals, ¹⁵ and the capacity for self‐management. ¹⁶ For children with CP, self‐management strategies are especially important to achieve effective rehabilitation outcomes without the burden of frequent clinic visits. ¹⁷

Although previous research identified barriers faced by caregivers when trying to access rehabilitation services in rural Bangladesh, ¹⁸ , ¹⁹ this does not serve as a simple inventory on which to base future policy and remediating measures. ²⁰ Uptake of services is a complex and multifaceted process, demanding rigorous examination of influencing factors. This study aimed to further explore the perspectives of both caregivers and local rehabilitation service providers to identify persistent barriers and enablers to engaging with available rehabilitation services for children with CP in rural Bangladesh, and gain a deeper understanding of how components interact with one another.

METHOD

Study design

We used a descriptive phenomenological qualitative design, informed by Husserlian philosophy, ²¹ , ²² to explore caregivers' and rehabilitation service providers' lived experiences and perceptions of barriers and enablers to rehabilitation service uptake among children with CP in rural Bangladesh. This approach was chosen to capture participants' experiences as described by them, while bracketing researcher assumptions. The use of inductive thematic analysis was adopted as a pragmatic analytical technique within this descriptive phenomenological framework.

This study was conducted as part of a cluster randomized controlled trial (i.e. Sustainable Model of eARly intervention and Telerehabilitation for children with Cerebral Palsy in rural Bangladesh [SMART‐CP]; trial registration no. ACTRN12622000396729). ²³ The SMART‐CP model includes: (1) a community‐based referral network for the identification of children with CP and establish mPower (mothers' power) groups to educate and empower mothers and caregivers of children with CP in rural Bangladesh; (2) subdistrict‐level SMART‐CP centres to provide basic physical therapy; (3) telerehabilitation by a central multidisciplinary team service for children to access advanced physiotherapy, speech therapy, nutrition services, and medical consultations. The current qualitative study was embedded within the SMART‐CP trial and conducted among a purposively selected subsample of trial participants to explore the contextual factors influencing service uptake and engagement. More details about the SMART‐CP trial are available in our previous publication. ²³

Reflexivity

The research team included a multidisciplinary group with expertise in child health, rehabilitation, and disability research. The primary researcher (SD) is a paediatric clinician and qualitative researcher external to the study communities; this provided an outsider perspective but required careful reflection on positionality and potential influence on data interpretation. Local collaborators (MHA and SI) are rehabilitation professionals, and IJ is a public health nutritionist familiar with the study context; together, they contributed to cultural interpretation and validation of the emerging themes. In addition, MM, NB, and GK are public health and childhood disability experts who supervised study implementation and data analysis. Reflexive discussions were held throughout the project to minimize the bias related to professional background, cultural distance, and power differentials between researchers and participants.

Study site and participants

The study was conducted in four subdistricts (i.e. Shahjadpur, Belkuchi, Sirajganj, and Ullapara) of the Sirajganj district, Bangladesh. Caregivers living in the study area were purposively selected by local rehabilitation staff through SMART‐CP centres. Children with CP who received services from the SMART‐CP trial at least once during the trial period were eligible to participate. Study participants were recruited using verbal invitation and a study information sheet, translated from English into Bengali to explain the study objectives and activities.

Data collection

In‐depth interviews were conducted at the SMART‐CP centres or at the participant's home depending on participant's convenience. A semi‐structured guideline, developed based on topic areas identified in previous research into caregiver engagement and participation in rehabilitation activities ²⁴ and the Theoretical Domains Framework, ²⁵ was used. The guideline included questions on caregiver knowledge, skills, feelings, relationships, values, beliefs, and the logistics of accessing services, and was pre‐tested before final administration.

The interviews were conducted by the primary researcher (SD), a paediatric physiotherapist with over 29 years of clinical experience and a master's degree by research, supported by an interpreter fluent in both Bengali and English. The interpreter was a graduate physiotherapist with prior experience in research involving children with disabilities. To ensure data fidelity, all transcripts were cross‐checked by a second bilingual postdoctoral researcher (MHA) to verify translation accuracy and consistency of meaning between the Bengali and English versions. Interviews were audio‐recorded, transcribed verbatim in Bengali, and subsequently translated into English, with all identifying information removed.

Data analysis

Because of the complex nature of barriers and facilitators in health, we intentionally chose to follow a broad definition, including any material, economic, cognitive, affective, or relational factor, which the authors consider to be associated with a caregiver's or child's non‐uptake or uptake of rehabilitation services or self‐management activities.

Data analysis followed an inductive and semantic thematic approach. ²⁶ The primary researcher (SD) read through each transcript twice before coding to gain some familiarity over the data set. Initial notes were made at this stage to refer back during code development and throughout the analytical process. These notes captured early impressions, potential patterns, and reflections on participants' language and meanings, which later informed the refinement of codes and theme development. Coding was completed manually on a line‐by‐line basis and codes were matched to pertinent data extracts.

Caregiver and professional transcripts were initially coded and reviewed separately to allow distinct perspectives to emerge. Once initial coding was completed, codes from both groups were compared to identify convergence and divergence. While the overarching themes were consistent across both groups, caregivers more frequently emphasized household and time‐related constraints, whereas professionals highlighted transport and resource limitations. These contrasts were subsequently integrated during theme refinement to capture the collective narrative of barriers and enablers across participant groups. An iterative approach was used to recoding and refining themes to capture the story of the data set. Themes and subthemes were identified based on their prevalence and their perceived relevance to rehabilitation uptake. Thematic saturation was reached after 45 caregiver interviews and eight staff interviews, when no new codes or concepts emerged, indicating adequacy of the sample size.

The validity of the analysis was evaluated by MHA and IJ, who reviewed 25% of transcripts. Codes, themes, and subthemes were discussed over a series of meetings and the authors resolved any differences of opinion through consensus to reach a final agreement. A data matrix was formulated to describe the final themes, subthemes, and data that illustrate them, along with a series of recommendations to optimize rehabilitation uptake, based on each identified theme.

Ethical consideration

Ethics approval for this study was obtained from the Asian Institute of Disability and Development Ethics Committee (reference no. Southasia‐hrec‐2022‐8‐01), Bangladesh. Written informed consent was obtained from all participating caregivers and rehabilitation staff before interview and data collection.

RESULTS

Between November and December 2022, 47 primary caregivers were invited to participate in the interviews; one declined and another was excluded because their child died. Of the remaining, 45 interviews were conducted with primary caregivers of children with CP, 26 of whom were regular attenders at rehabilitation services (approximately weekly) and 19 were identified by rehabilitation staff as irregular attenders. Additionally, eight interviews were conducted with rehabilitation staff, including physiotherapists, rehabilitation support workers, and community mobilizers. Interviews from one irregularly attending caregiver and one rehabilitation staff member were not transcribed or included in the data analysis because of inaudible recordings caused by background noise. In total, 44 caregiver interviews and seven staff interviews were analysed and are reported in the manuscript (Figure S1).

Participant demographics

Most caregivers were mothers of children with CP (86.4%), with a median (interquartile range [IQR]) age of 31 years 9 months (25 years 9 months–37 years 9 months). Over half of mothers (56.8%) and fathers (52.3%) had only primary education. All mothers were homemakers, while most fathers worked in blue‐collar occupations (40.9%). The median (IQR) monthly household income was BDT 10 000 (10 000–15 000), which is approximately US$83 (US$83–125). Most caregivers lived in modest housing (54.5% in kutcha houses) with a median (IQR) of 5 (4–6) family members across 2 (1–2) rooms. The median (IQR) age of children with CP was 3 years 4 months (2 years 1 month–6 years 8 months); 56.8% were male and 79.5% had spastic CP. No significant demographic or clinical differences were found between families attending rehabilitation services regularly and those attending irregularly (Table S1).

Among rehabilitation professionals, 57.1% were male with a median (IQR) age of 26 years 9 months (25 years 6 months–33 years 3 months). Nearly half (42.9%) completed higher secondary education and 57.1% held a community mobilizer role (Table S2).

Themes

Three themes were identified: (1) financial and logistical resources; (2) the emotional burden of caring for a child with a disability; and (3) self‐efficacy. Within each theme, we identified barriers and enablers as subthemes, which subsequently guided several recommendations to improve rehabilitation service accessibility for children with CP in rural Bangladesh (Figure 1).

FIGURE 1.

Schematic of themes, barrier and enabler subthemes, and recommendations. Abbreviation: CP, cerebral palsy.

Engagement was highly context‐dependent. Similar barriers or enablers could hinder or assist engagement for some caregivers but not others. Subthemes did not fit neatly within their themes; peer support, for example, could alleviate the emotional burden of caring for a child with a disability and promote self‐efficacy.

While the overall themes were consistent across both participant groups, some differences emerged between caregivers and rehabilitation staff. Caregivers primarily emphasized challenges related to domestic workload, time pressures, and family decision‐making dynamics. In contrast, staff more frequently highlighted transport and infrastructural barriers, as well as limited community awareness and resource availability. These differing emphases reflect complementary perspectives on the same systemic constraints and together provide a more comprehensive understanding of the contextual barriers to rehabilitation engagement.

Theme 1: Financial and logistical resources

Poverty was a major barrier to attending services. For the majority of those living in remote areas, the travel expenditure and travel time required to reach a rehabilitation centre acted as a prohibitive factor to accessing services. The implications of time spent travelling and attending services were a critical issue for several families. This led the caregiver to choose between taking their child to the rehabilitation centre or earning a livelihood to provide food for the family.

I earn 300–400 taka [US$3–4]. So, when I go to the centre, I can't earn that much money… (Caregiver 27)

There's no money. Where can I get the money? I have to get a loan in order to manage. (Caregiver 43)

In addition to the cost of transport, the logistical aspect of travelling to and from the nearest rehabilitation centre was a limiting factor for several families. Roads are poor and inaccessible during the monsoon season and heavy rain. Some families reported that the strain of carrying children across long distances in their arms, especially for parents with more than one child with a disability, posed significant challenges to attending rehabilitation services. Intersections between poverty and transport were highlighted as barriers to the provision and use of assistive devices.

… I cannot go anywhere alone. I asked people to go with me but no one would … (Caregiver 30)

Many children come from remote areas where transport is scarce … [and expensive] especially for older children. (Staff 7)

My son often asks to go out, but it is not possible; we have no wheelchairs … and the roads are not suitable for a wheelchair. (Caregiver 41)

Time constraints emerged as a distinct barrier to attending rehabilitation services and participating in home‐based rehabilitation. Many caregivers reported that attending the centre required considerable time away from income‐generating activities and household responsibilities. For families already under financial strain, the hours spent travelling to and from the centre or attending sessions often competed with their basic livelihood needs. Several caregivers described having to choose between attending rehabilitation and earning a daily income or managing essential household tasks.

They [caregivers] often tell us they don't have time to attend [rehabilitation sessions], even though they know it would help … (Staff 4)

Competing domestic and caregiving responsibilities further limited caregivers' ability to engage consistently in rehabilitation activities. Mothers were almost always the primary caregivers and were also responsible for managing household duties, childcare for other children, and agricultural or livestock work. These overlapping responsibilities often meant that rehabilitation sessions and educational programmes were deprioritized despite caregivers' awareness of their potential benefits.

I need to look after the cows and do all the cooking with her [child with CP] in my lap. (Caregiver 34)

Both caregivers and staff identified that making rehabilitation services available to the union (the smallest rural administrative unit) could be an important enabler and increase rehabilitation uptake among these children. Although some caregivers struggled to afford the cost of transport, rehabilitation uptake was enabled by the low, or even no charge, cost to attend a SMART‐CP centre (i.e. the nearest rehabilitation centre).

Of course, I would go if the centre was closer.(Caregiver 37)

If we make the centres union [smallest rural administrative unit]‐based and not upazilla [subdistrict]‐based, then more people can come. (Staff 6)

I mean we are getting the services [from SMART‐CP centres] for a very low price and they are helping my daughter to improve. (Caregiver 25)

Assistance from family members was also key to facilitating uptake, in terms of helping travel to and from the rehabilitation centre, assisting with self‐management strategies at home, and sharing the burden of looking after other siblings at home and other household duties.

My sister‐in‐law, my mother‐in‐law, and husband all help with the rehabilitation [of my child]. (Caregiver 10)

Theme 2: Emotional burden

The second overarching theme and barrier to rehabilitation service uptake is the emotional burden of raising a child with CP. Caregivers of children with CP frequently reported mental exhaustion from ‘seeking a cure’ for their child with CP. Several caregivers of children who are not currently receiving rehabilitation services reported having previously sought services or assistance from several medical practitioners, therapists, or traditional healers in the hope of finding a permanent remedy or ‘cure’. A lack of perceived improvement in their child's condition, in combination with the burden of medical costs and lack of family support, resulted in them pulling away from services and relying on faith to improve theirs and their child's situation.

I've been going from place to place for so long and it [rehabilitation] is not making any improvement. (Caregiver 35)

Some families no longer attend [rehabilitation] because they've lost hope. They believe physiotherapy cannot improve their children, so they stop coming. (Staff 2)

Negative family attitudes restricted some mothers from attending available rehabilitation services, where senior family members (e.g. decision‐makers) did not see value in spending time or money on a child with a disability.

Now his [child's] father says that his son is not improving. There is no need for rehabilitation. (Caregiver 33)

The father says that they shouldn't go as it creates problems in the family, and it takes a lot of money to go to the rehabilitation centres and their child will not improve. (Staff 4)

Stigma was frequently raised in interviews with caregivers, even those who regularly attended. Caregivers in this study also identified the effect of negative societal attitudes directly on the child, limiting their willingness to engage in activities outside the immediate family environment.

We mothers who have these babies are the laughing stock of the people around us. Everyone laughs [at us]. (Caregiver 24)

Everyone says it's because of me, there are ghosts with me. I am the cause of my child's disability. (Caregiver 29)

There are many superstitions … some people say that the child's condition is the fault of the mother's fault, [that] the mother committed a sin and the child is now suffering the consequences … Many say that children with disabilities cannot achieve anything [to support the family], so there is no point in rehabilitating them. (Staff 6)

Nevertheless, caregivers identified the value of peer support and of sharing lived experiences in overcoming the emotional burden.

It means a lot to me to meet other mothers and for my child to meet other children when we go to the rehabilitation centres. I didn't know anything about CP before coming here and talking to other mothers. (Caregiver 14)

Apart from therapy, I feel better when I talk to the other mothers [of children with CP] and I think it is important. (Caregiver 23)

The value of community awareness meetings in helping to improve societal understanding of CP, reduce stigma, and improve attitudes towards caregivers, their child, and extended family was also reported.

… people used to say things that hurt me a lot. Now it doesn't hurt me anymore, because I see my child improving. If awareness meetings were held in every community, people would stop making fun of us. (Caregiver 26)

Theme 3: Self‐efficacy

Self‐efficacy, defined as an individual's belief in their ability to influence their own outcomes, emerged as a key factor influencing rehabilitation uptake. Two interrelated subthemes were identified: knowledge and confidence; and resources and tools.

A strong sense of caregiver self‐efficacy was identified as a major facilitator, particularly through increased knowledge and confidence gained from participation in rehabilitation sessions and mPower group meetings. The mPower meetings provided peer‐to‐peer support and enhanced health literacy among mothers of children with CP. Caregivers described how coaching from community rehabilitation workers enhanced their understanding of CP and their skills in providing home‐based care for their children.

When I saw that my child was slowly improving, I was eager that I have to bring my child for rehabilitation. (Caregiver 17)

… the therapist explains to us what rehabilitation my baby needs and what to do, how to do. We can provide him the rehabilitation he needs. I like it. (Caregiver 4)

Caregivers who regularly attended rehabilitation expressed greater confidence in their understanding of rehabilitation strategies and their ability to implement them at home. This knowledge fostered realistic goal setting, sustained motivation, and continued engagement with services.

Mothers whose children benefited from rehabilitation can become influential advocates and are able to convince other families, … that rehabilitation is essential. (Staff 7)

However, self‐efficacy was also influenced by access to appropriate resources and tools. Limited availability of information materials, especially those suited to caregivers with low literacy, often hindered their ability to implement what they had learnt. Both caregivers and staff emphasized the need for practical, user‐friendly materials to support learning and daily rehabilitation practices.

I am not much educated. I don't know much [about rehabilitation]. (Caregiver 30)

If we provide pictorial resources for mothers who can't read, they can use the pictures for rehabilitating their children. (Staff 4)

In addition to informational resources, external constraints such as financial hardship, distance to services, and lack of social support were frequently cited as barriers to maintaining rehabilitation attendance. These limitations reduced caregivers' confidence in their ability to sustain their child's rehabilitation over time.

I want therapy [for my child] but I can't afford it. My husband says this baby won't recover. … and people around say she won't recover, it breaks my heart. … I've been going from place to place for years with no improvement. … I have become sick myself after caring for her for 9 years … If the services were closer, I might have managed, but I don't have the money to travel. I need both people and money [to take my child to the rehabilitation centre] … Many say it'll get better, but I don't think so. I've lost faith. (Caregiver 35)

Overlapping subthemes

The subthemes identified in this study are inherently cross‐cutting, influencing more than one major thematic domain. For example, stigma interacted with both the emotional burden of caring for a child with CP and with caregiver self‐efficacy, shaping not only feelings of isolation and distress but also influencing caregivers' confidence and willingness to participate in rehabilitation. Peer support also showed overlap, serving both to alleviate psychological stress (emotional burden) through shared experience and connection, and to enhance self‐efficacy by building caregiver knowledge and practical skills through mutual learning.

Family support was noted as spanning financial, logistical, emotional, and self‐efficacy domains, acting as both a practical enabler of service access, a source of emotional resilience, and a contributor to empowering caregivers in their daily management roles. Community awareness emerged as a subtheme with direct relevance for both reducing emotional burden (by mitigating stigma and negative community attitudes) and for nurturing self‐efficacy (by normalizing disability and enabling positive role modelling). In contrast, subthemes such as poverty and time constraints primarily intersected with the financial and logistical theme but had indirect or context‐dependent implications for emotional burden and self‐efficacy (Table S3).

DISCUSSION

This study explored caregivers' and rehabilitation professionals' perceptions of persistent barriers and facilitators to rehabilitation service uptake for children with CP in rural Bangladesh. Three overarching themes were identified: financial and logistical resources; emotional burden; and self‐efficacy.

Financial and logistical resources

The predominant theme across interviews was the barrier presented by financial and logistical constraints in attending rehabilitation centres. Poverty, transport difficulties, and competing livelihood demands were recurring challenges. However, low‐cost services and family assistance emerged as strong enablers. Support from relatives helped caregivers negotiate transport barriers, share childcare, and implement home‐based rehabilitation.

The impact of poverty on rehabilitation uptake reflected findings from similar studies across Bangladesh and other LMICs, ¹³ , ¹⁸ , ²⁷ where caregivers often sold assets or reduced food expenditure to pay for care. ²⁸ In our study, several caregivers prioritized daily income over therapy attendance, highlighting the trade‐off between health and survival. Such financial strain underscores the need for practical, context‐specific measures, subsidized transport, community‐based service delivery, and livelihood support, to improve access for vulnerable families.

Poverty also limits engagement in home‐based rehabilitation through restricting access to assistive devices. An evaluation of rehabilitation services in Bangladesh highlighted the limited production capacity for assistive devices for people with disabilities. ²⁹ Appropriate paper‐based technology may offer a solution to improving access to assistive devices for children with CP in low‐resource settings. ³⁰ , ³¹

Measures to support caregiver livelihoods could enable them to overcome economic access barriers. ³² A cluster randomized controlled trial in rural Bangladesh found that integrating livelihood support with community‐based rehabilitation improved both socioeconomic status and child health‐related quality of life. ³³ This highlights the potential for integrating livelihood support with rehabilitation services as a strategy to enhance access to care, reduce financial strain, and improve overall outcomes for families facing socioeconomic challenges.

The emotional burden of caring for a child with a disability

The second key theme was the emotional burden of raising a child with CP. Caregivers described feelings of stress, isolation, and helplessness, often intensified by negative family attitudes, limited community understanding, and stigma. Many reported losing hope of meeting their child's rehabilitation needs. These experiences reflect findings from other LMICs, where caregivers of children with disabilities commonly experience anxiety, social exclusion, and diminished agency. ³⁴ , ³⁵ , ³⁶ , ³⁷ Informal social support from family members, such as help with childcare and daily tasks, helped to reduce stress and sustain engagement in care.

Peer support also emerged as a vital facilitator for emotional well‐being. The mPower group activities under the SMART‐CP trial enabled caregivers to share experiences, build coping skills, and receive practical advice on caring for their children. ²³ , ³⁸ Similar caregiver‐to‐caregiver support models improved maternal coping skills and stress in Jordan, ³⁹ and enhanced child physical and social functioning and family empowerment in Pakistan. ⁴⁰ A systematic review of peer interventions for parents of children with disabilities in LMICs found consistent improvements in well‐being and self‐efficacy. ⁴¹ Expanding structured peer and family support networks through community‐based or non‐governmental organization‐led initiatives could enhance caregiver resilience, reduce stress, and increase engagement in rehabilitation. ³⁷

Stigma also emerged as a persistent emotional barrier. It was more frequently raised by caregivers who regularly attended services, suggesting that greater community interaction heightened awareness of discrimination and negative attitudes. Caregivers valued community awareness meetings that helped reduce stigma and promote understanding of CP, which is consistent with evidence from Ecuador showing improved public attitudes after disability training. ⁴² Integrating local awareness campaigns within rehabilitation programmes could help reduce stigma, normalize disability, and foster inclusion for caregivers and children with CP.

Governments have a central role in promoting disability awareness and supporting caregiver well‐being. Sustained policy‐driven awareness initiatives, embedded within national health, education, and social protection systems, can shape more inclusive community attitudes and strengthen service uptake. Evidence from Vietnam shows that government‐led awareness campaigns can improve disability understanding, school inclusion, and social participation. ⁴³ In Bangladesh, similar cross‐sectoral efforts could be integrated into existing maternal and child health platforms, with collaboration between ministries, non‐governmental organizations, and community health workers. Embedding mental health and caregiver support into primary care, providing structured training for frontline workers, and funding local peer groups could create a sustainable framework for caregiver well‐being. ⁴⁴ Therefore, government–non‐governmental organization partnerships that combine national awareness efforts with grassroot peer and psychosocial support could reduce emotional burden, address stigma, and foster inclusive community participation for children with CP and their families.

Self‐efficacy

The final theme in this study was self‐efficacy, that is, the extent to which caregivers feel able to influence outcomes for their children. Strengthening caregivers' understanding of childhood disability is key to developing their ‘power within’. ⁴⁵ Therapist–caregiver relationships are central to fostering this sense of agency. Equitable partnerships that value caregivers' expertise, set meaningful goals, and integrate home activities into daily routines can improve both engagement and child outcomes. ⁴⁶ Coaching helps parents to put theory into practice and develop self‐efficacy. ⁴⁷ Therefore, building caregiver self‐efficacy through respectful partnerships and practical coaching should be a core component of rehabilitation delivery.

Caregiver training programmes enhance both access and outcomes in early intervention. A community‐based group intervention in rural Bangladesh found that combining therapy with caregiver participation improved children's functional outcomes and reduced caregiver stress. ⁸ The SMART‐CP trial adopted a similar approach, with mPower or peer support group activities providing focused advice on play, feeding, and communication while improving caregivers' knowledge and understanding of CP. ²³ , ³⁸ Expanding community‐delivered group interventions that integrate therapy and caregiver education could enhance confidence, reduce stress, and sustain engagement in home‐based rehabilitation.

Despite these benefits, attendance at education and rehabilitation sessions was inconsistent. Many caregivers requested flexible and accessible delivery options, including written and pictorial guides to support learning, especially for those with limited literacy. A systematic review reported that pictorial aids improved adherence in 58% of studies involving participants at risk of poor compliance. ⁴⁸ Therefore, providing simple, locally tailored educational materials alongside in‐person coaching could improve understanding, adherence, and continuity of home programmes.

Engagement with rehabilitation services was also influenced by contextual factors such as time, distance, and family priorities. Caregivers of older children described fatigue, loss of motivation, and the physical difficulty of travel. These findings suggest that service engagement fluctuates naturally over time, requiring adaptive and personalized approaches. Combining livelihood support, accessible service delivery, caregiver coaching, and provision of assistive devices could maintain participation and promote inclusion for children with CP across different life stages.

Improving access to rehabilitation services must be complemented by strong national and local policies that support disability inclusion, ensuring that all children can thrive. Expanding services beyond specialist centres is essential for children and caregivers with CP. Participation should be seen not only as an end point of rehabilitation but also as an entry point. ⁴⁹ Strategies that enable engagement in schools, community activities, and broader society can promote meaningful participation across the life course. Achieving this in many LMICs requires adequate investment in infrastructure and a skilled workforce, alongside the political commitment to design and implement inclusive policies.

Limitations

Given the qualitative design of the study, findings are subject to interviewer and caregiver response bias. We reduced recall bias by triangulating data from caregivers who engaged in rehabilitation activities relatively easily, those who had great difficulty in accessing services, and rehabilitation staff who were in contact with both. Themes were iteratively developed by three authors; this aimed to reduce researcher bias, although we acknowledged that, as a qualitative investigation, interviewer preconceptions will form part of the overall study findings. As caregiver responses are based on their own experiences of local services, data are context‐specific, limiting generalizability. A second limitation is the use of bilingual interview data. Difficulties in capturing the precise meaning of interview data through transcription, translation, and transliteration processes risks failure in accurately reflecting caregivers' voices. ⁵⁰ A third limitation is lack of data directly from children, whose opinions on barriers and facilitators to uptake of rehabilitation services may differ from their caregivers. Finally, this study focused on participants who were already involved in the SMART‐CP trial and had access to SMART‐CP centres. Therefore, the views of families who face more significant barriers to accessing services or are not engaged with the SMART‐CP programme may not be fully represented, potentially limiting the breadth of the findings.

Conclusion

Barriers and facilitators to rehabilitation uptake for children with CP in rural Bangladesh are multifaceted and context‐dependent. Financial hardship, logistical challenges, and caregiver emotional burden remain major obstacles, while family support, caregiver education, and community‐based interventions enhance engagement. Integrating livelihood and transport support with rehabilitation delivery, strengthening peer and community networks, and providing caregiver education through accessible materials can improve uptake. National and local policies that prioritize disability inclusion and expand rehabilitation infrastructure are essential to ensure equitable access and meaningful participation for all children with CP.

CONFLICT OF INTEREST STATEMENT

The authors declare no conflicts of interest.

Supporting information

Figure S1: Study flow diagram.

Table S1: Characteristics of participating caregivers and their children with cerebral palsy

Table S2: Characteristics of rehabilitation professionals

Table S3: Overlapping subthemes across key thematic domains

Drew S, Islam S, Jahan I, Muhit M, Badawi N, Khandaker G, et al. Rehabilitation for children with cerebral palsy in a lower‐middle income country: A qualitative phenomenological study. Dev Med Child Neurol. 2026;68:1421–1431. 10.1111/dmcn.70148

DATA AVAILABILITY STATEMENT

Data available on request due to privacy/ethical restrictions.