Caregiving challenges among caregivers of patients with low-vision glaucoma: a qualitative exploration at the Presbyterian Hospital, Agogo, Ghana

Abstract

Purpose

To understand the challenges faced by family members or friends providing informal care and support to patients with low-vision glaucoma seeking treatment at the Presbyterian Hospital, Agogo in the Ashanti region of Ghana.

Methods

The study employed a qualitative design using semi-structured in-depth interviews to explore the lived experiences of informal caregivers of patients with low vision due to glaucoma. Participants were purposively selected at the hospital during patients’ review visits, as they accompanied them for care. Data were collected through audio-recorded interviews in Akan (Twi) guided by open-ended questions until thematic saturation was achieved. Transcripts were analysed using abductive thematic analysis, combining inductive coding with interpretation informed by the Stress Process Model.

Results

The study involved 11 informal caregivers, out of which 8 were females. The study identified 4 main themes and 10 subthemes. These included caregiving roles (basic activities of daily living, instrumental activities of daily living and emotional support), caregiving challenges (practical challenges, emotional challenges and financial challenges), coping strategies (adaptive and maladaptive coping strategies) and recommendations to clinicians (quantity of medication, review appointments and health education).

Conclusion

Caregivers of patients with low-vision glaucoma face practical, financial and emotional challenges that may require caregiver support, patient education and improved access to eye care services. Addressing these needs may be vital to enhance caregiver resilience, reduce caregiver burden and improve patient outcomes.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• Ensured credibility through trained interviewers who were optometrists and with transcript reviews.

• Maintained dependability using consistent data collection procedures.

• Achieved confirmability through transparent analysis with the help of QDA Miner Lite.

• One-time interviews restricted depth and prevented longitudinal or follow-up insights.

• The single-hospital setting of the study may restrict transferability.

Introduction

Glaucoma is a chronic, progressive and multifaceted eye disease that damages the optic nerve and leads to irreversible visual field loss. It is a leading cause of irreversible blindness worldwide, contributing significantly to disability and reduced quality of life, particularly in low- and middle-income countries.¹,³ In Ghana, glaucoma accounts for 19.4% of blindness, making it a critical public health concern.⁴ The burden of glaucoma is compounded by limited awareness, late presentation and the high cost of treatment, which together contribute to avoidable vision loss and blindness.⁵ Glaucoma-related visual field loss, particularly in the inferior peripheral field also impairs obstacle detection, increasing the risk of falls and highlighting the need for caregiver support for such patients during mobility and daily activities.^{6 7}

While much attention has been given to the clinical and economic dimensions of glaucoma, the challenges faced by informal caregivers remain less explored. The hidden contributions of caregivers are rarely captured in discussions of various chronic conditions, yet they form the backbone of sustained care, especially in resource-limited settings.^{8 9} The concept of ‘hidden patients’ emerges from the recognition that caregivers often experience significant health problems themselves while caring for loved ones.¹⁰ Therefore, addressing the challenges faced by caregivers is crucial not only for their well-being but also for the health and quality of life of those they care for.^{10 11}

Caregivers, often family members, play an indispensable role in the day-to-day management of individuals living with low vision from glaucoma. Their responsibilities include sighted guiding, accompanying patients to medical appointments and assisting with daily tasks that patients are no longer able to perform independently.^{12 13} These roles are critical in supporting treatment adherence and maintaining patients’ quality of life. However, these roles are often performed without formal training or support, placing caregivers at risk of physical strain, emotional exhaustion and financial hardship.¹⁴ These pressures are worsened in low-resource settings like Ghana, where structured support systems such as counselling, financial aid and respite care are lacking. The absence of such support not only undermines caregiver well-being but also perpetuates poverty and health inequities, while the limited research on caregiver burden in glaucoma care further hampers the development of effective policies and interventions.

While several studies in high-income countries have examined the psychosocial impact on patients and families, caregiver experiences in low-resource settings remain underexplored. In Africa, research has focused largely on clinical outcomes, access to services and systemic barriers rather than the lived experiences of caregivers.¹⁵ In Ghana, studies have highlighted limited low-vision rehabilitation services, inadequate assistive devices and low public awareness, with psychosocial evidence also showing that patients with low vision often experience increased dependence on others, frustration and emotional distress.^{16 17} However, little is known about the lived experiences of caregivers who provide continuous emotional and physical support to patients with low-vision glaucoma. This study, therefore, explores the challenges faced by informal caregivers of such patients at the Presbyterian Hospital, Agogo.

Methods

Study approach and design

This study employed a qualitative approach using semi-structured in-depth interviews to explore the lived experiences of informal caregivers of patients with low vision glaucoma. While the study was informed by a phenomenological orientation, an abductive thematic analysis approach was adopted in analysing the data.

Study setting and participants

The study was conducted at Presbyterian Hospital, Agogo, one of the oldest mission hospitals in Ghana, recognised for its long-standing role in delivering specialised ophthalmic care and serving as a major referral centre in the Ashanti region. The study targeted informal caregivers who provided direct support to patients with low-vision glaucoma. Participants were recruited using purposive sampling techniques to ensure inclusion of individuals with substantial caregiving responsibilities. Eligibility criteria required participants to be family members or friends providing direct unpaid care to patients with glaucoma-related low vision. Caregivers were selected based on their willingness to participate and their ability to provide in-depth information relevant to the study objectives. The purpose of the study was explained to participants and informed consent obtained from both the participants and the patients. Participants were assured of confidentiality and anonymity, and all data were securely stored with access restricted to the research team.

Data collection procedure

Data were collected through in-depth interviews using a semi-structured interview guide with open-ended questions. Interviews were conducted by optometrists trained as research assistants, who also ensured adherence to ethical and methodological protocols. Participants were informed about the voluntary nature of the study and were assured of confidentiality and the freedom to withdraw at any point without consequences. The interview sessions were scheduled at a period and locations convenient for the participants to enhance an open and honest conversation. All interviews were done in Akan (Twi) and audio-recorded to ensure accuracy and completeness. Data collection ceased when thematic saturation was reached after the ninth interview and confirmed with two additional interviews, as subsequent interviews yielded no additional codes or meaningful variation in themes.

Data analysis

The audio-recorded interviews were transcribed verbatim and reviewed for accuracy. Transcripts were then analysed using QDA Miner Lite, a qualitative data analysis tool. An abductive analytical approach was adopted, allowing for both inductive identification of themes from participants’ accounts and deductive interpretation informed by the Stress Process Model (SPM).¹⁸

The content of the transcripts was coded and organised into subthemes and themes. A continuous process of refinement was employed throughout the analysis to ensure accurate categorisation and interpretation of emerging patterns. This iterative process enhanced the validity of the thematic findings and allowed for the emergence of nuanced insights into the caregiving experiences.

Rigour of findings

To ensure trustworthiness, the study followed principles aligned with Lincoln and Guba’s criteria.¹⁹ Credibility was enhanced through the use of trained interviewers, transcript review and iterative coding involving a second researcher after the lead researcher had conducted the primary coding. Confirmability and transparency were supported through reflexive memoing and the maintenance of an audit trail, which documented coding decisions, theme development and analytic revisions. Dependability was ensured through the consistent use of a semi-structured interview guide and systematic analytical procedures, while probing and summarisation were used to validate participants’ responses. Transferability was supported by the rich descriptions of the study setting, participants and findings. QDA Miner Lite was used to support data organisation throughout the data analysis process.

Results

Socio-demographic characteristics of caregivers and patient

A total of 11 caregivers were interviewed in the study (table 1). The participants comprised 8 females and 3 males. The participants ranged in age from 20 to 60 years, with a mean age of 39.1 years (SD=10.6) and a median of 38 years, indicating that most participants were within the young to middle-aged adult group. In contrast, the patients ranged in age from 38 to 94 years, with a mean age of 72.4 years (SD=16.6) and a median of 71 years, indicating a predominantly older adult population, with some variability in age.

Table 1. Socio-demographic characteristics of caregivers and clinical characteristics of patients.

Participant	Age	Gender	Employment status	Relationship	Duration of caregiving	Gender of patients	BCVA of patients	Comorbidities
CG 1	Early 50s	Female	Employed	Daughter	1 year	Female	1/60	Hypertension
CG 2	Early 60s	Male	Unemployed	Spouse	1 year, 4 months	Female	6/60	None
CG 3	Early 40s	Male	Employed	Spouse	2 years	Female	NPL	None
CG 4	Early 50s	Female	Employed	Sibling	1 month	Male	3/60	None
CG 5	Late 30s	Female	Employed	Daughter	6 months	Female	6/60	Hypertension Bil. Pseudophakia
CG 6	Early 20s	Female	Unemployed	Granddaughter	6 months	Male	1/60	Bil. Pseudophakia
CG 7	Late 30s	Female	Employed	Daughter	2 years	Male	1/60	None
CG 8	Early 30s	Female	Employed	Granddaughter	2 years	Female	6/60	Diabetes Hypertension Bil. Pseudophakia
CG 9	Early 20s	Female	Unemployed	Granddaughter	7 years	Female	2/60	Hypertension, Bil. Pseudophakia
CG 10	Late 30s	Female	Employed	Daughter-in-law	7 years	Female	2/60	None
CG 11	Late 30s	Female	Employed	Daughter	1 year	Female	1/60	Bil. Pseudophakia

BCVA, best-corrected visual acuity; CG, caregiver.

Most caregivers were daughters or granddaughters of the patients, with the rest comprising spouses, a sibling and a daughter-in-law. Seven (7) out of the 11 participants were employed. The duration of caregiving ranged from as short as 1 month to as long as 7 years. Seven of the caregivers were responsible for female patients, while four provided care for male patients.

Themes and subthemes

Exploring the experiences of the caregivers in providing support to their care recipients revealed 4 main themes and 10 subthemes. The main themes included: caregiving roles, caregiving challenges, coping strategies and recommendations to clinicians (table 2). The level of abstraction of themes and subthemes is outlined in table 2. Additionally, figure 1 represents the challenges faced by the informal caregivers examined in the context of SPM.

Table 2. Themes and subthemes derived from caregivers.

Themes	Subthemes
Caregiving roles	Basic activities of daily living
	Instrumental activities of daily living
	Emotional support
Caregiving challenges	Practical challenges
	Financial challenges
	Emotional challenges
Coping strategies	Adaptive
	Maladaptive
Recommendation to clinicians	Quantity of medication and longer intervals between reviews
	Education on condition

Figure 1. Challenges of caregivers examined in the context of Stress Process Model.

Theme 1: caregiving roles

The participants provided responses addressing their caregiving responsibilities and the kinds of support they offer in their care of the patients. According to the participants, caregiving involves multiple dimensions of role beyond just physical assistance. They emphasised that understanding and performing these roles is vital to meeting the needs of those they care for. In addition to the main theme, three subthemes were identified representing the nature of caregiving roles. These subthemes were basic activities of daily living (BADL), instrumental activities of daily living (IADL) and emotional support.

Subtheme: basic activities of daily living

BADLs for patients with low-vision glaucoma can be significantly impacted due to their visual impairments. Although some of those activities such as feeding, brushing teeth were generally not impeded, some other activities; mostly mobility needed the role of the caregiver. A sibling and a granddaughter reported being fully responsible for the daily needs of their relatives, including mobility, assisting the patient to use the washroom and providing constant physical support.

I cook for him, fetch his bathing water, and help him when he needs to use the toilet. I guide him in everything he does. (CG4, sibling, early 50s)

I bathe her, help her use the toilet, and guide her everywhere, including when she comes to the hospital. I am responsible for everything. (CG9, granddaughter, early 20s)

From the caregivers’ accounts, the older adults had significant visual impairments and mobility challenges, requiring constant assistance with daily activities, personal hygiene and movement within and outside the home.

I can stay in the house for days because of her eyes. She cannot see you even when you are close, and she cannot find her way to the washroom. (CG10, daughter-in-law, late 30s)

You need to guide her in public, and when she is going to church, I take her to the front of the house so we can get a vehicle to church. (CG1, daughter, early 50s)

Subtheme: instrumental activities of daily living

IADLs including meal preparation, medication management, laundry and financial tasks formed a core part of caregivers’ responsibilities. Performing these activities in turn supported care recipients in maintaining their BADLs making them vital in caregiving. Caregivers reported assuming multiple roles to facilitate daily functioning, including preparing meals, coordinating hospital visits, providing financial support and managing finances.

I do the cooking for her because of her condition. She cannot go to the kitchen, so I help her with cooking. (CG2, husband, early 60s)

My duty is also to give her the remittances, and when she is sick or due for a review, I take her to the hospital. When she needs anything to be done, she calls on me to attend to it. (CG8, daughter-in-law, early 30s)

Subtheme: emotional support

Caregivers were found to play a crucial role in providing emotional support to the patients to help them cope with the frustrations and depression that often accompany vision loss. The caregivers reported that providing this form of support was necessary for fostering a sense of belonging and also to boost the patient’s confidence in coping with the significant visual impairment. A caregiver who is a sibling of the patient explained that efforts were often made to keep the patient happy in order to prevent sadness and depression.

I usually try to do things so that he does not become depressed because of his condition. We try to make him happy. (CG4, sibling, early 50s)

Theme 2: caregiving challenges

The participants shared their experiences regarding the difficulties they face in their caregiving journey. These challenges affect their physical, emotional and financial well-being. According to the participants, caregiving can be demanding and stressful, especially in the absence of adequate resources or support. Three subthemes were identified under this main theme, highlighting the key areas of concern namely practical challenges, financial challenges and emotional challenges.

Subtheme: practical challenges

Practical challenges faced by the caregivers were related to difficulties with sighted guiding of patients with low-vision glaucoma, lack of physical support and the time-consuming nature of the caregiving duties. Some caregivers recounted the physical challenges involved in supporting their relatives, especially in public spaces. One caregiver reported the difficulty of guiding the patient through crowded areas without falling, while another expressed the lack of physical support in the caregiving roles.

Getting here to the hospital, I had to guide her through crowded places and be careful so she would not fall. We nearly fell down together. (CG8, granddaughter, early 30s)

No one helps me. I am responsible for everything; taking her to the hospital, managing her medications, providing financial support, and assisting her with daily activities. (CG3, husband, early 40s)

The caregiving role is also time consuming to the extent of affecting other important responsibilities and needs of the caregiver. While one caregiver mentioned being frequently called away from school, another expressed concern about losing her casual catering job due to frequent absenteeism.

I am not able to concentrate well on my academics. Sometimes I am called to come home [from school]. (CG6, granddaughter, early 20s)

Caring for her affects my work. When I bring her to the hospital, they [my employer] may replace me with someone else. It is a catering job I do every week, so my absence becomes a challenge. It is a problem for me if they have engaged another person while I am away. (CG9, granddaughter, early 20s)

Financial challenges

Financial problem was one of the frequently talked about themes during the interviews. Caregivers including a husband and granddaughters alluded to facing financial difficulties, with limited support affecting hospital visits and daily needs. Some experienced reduced income due to caregiving responsibilities.

Finance has been a big challenge because every hospital visit requires money. Her feeding and care also require money. Only one of her children supports us financially, and it is not sufficient for both the patient and me. We have to visit the hospital every month. (CG9, granddaughter, early 20s)

With hospital reviews, we sometimes delay when we do not have enough money. However, when we have money, we attend monthly reviews though the last visit was about two to three months ago. (CG10, daughter-in-law, late 30s)

The rate at which I used to attend to my work has reduced. I am now on pension but engaged in farming. However, I do not get enough time to go to the farm as I should, and sometimes I have to return early. This has affected my profit from farming. (CG2, husband, early 60s)

Emotional challenges

Some caregivers described the caregiving role as presenting significant challenges that contributed to emotional distress. These challenges were largely related to the demanding nature of caregiving tasks, limited social support and patients’ attitudes. A caregiver reported experiencing stress associated with continuous responsibility and also the expectation to remain resilient despite personal ill health.

It is a difficult task. I have to carry her when she is sick and when I am not well, there is no one to help her [patient]- to give her water or fetching water for her to bath, unless I do it. When I am sick, I have to encourage myself to get up. (CG9, grand-daughter, early 20s)

A caregiver also expressed the frustration arising from patients’ changing needs and recurrent issues.

She likes complaining. She will ask for one thing and when it is provided, she then rejects it and ask of a different thing and that is emotionally exhausting and stressful. (CG8, granddaughter, early 30s)

Theme 3: coping strategies

Participants also described the ways they manage stress and maintain resilience in the face of difficult caregiving demands for which they reported varying coping strategies. From these strategies, two subthemes were identified within this main theme namely adaptive and maladaptive strategies. Adaptive coping strategies were mechanisms that helped caregivers positively adjust to their roles while the maladaptive coping strategies had potentially negative effects on their well-being and that of the patients.

Adaptive coping strategies

These coping methods adopted by caregivers were perceived to promote their own well-being without causing harm to the patients under their care. According to caregivers’ accounts, the strategies employed included self-encouragement, religious practices, seeking help from others, adequate sleep, taking breaks to relieve stress, engaging in media consumption for entertainment and participating in physical exercise.

It is God whom we pray to. Sɛ etiri anti a, yɛrenngyae kyɛ soa [proverb meaning: as long as we are alive, we will always have responsibilities]. What can we do? Little by little, He [God] helps us over everytime. (CG4, sibling, early 50s)

I encourage myself because it is mostly my responsibility. (CG6, granddaughter, early 20s)

When I feel stressed, I rest. And when I wake up in the morning, I make sure I walk barefooted for a while. Walking on gravels for a while. (CG2, husband, early 60s)

Maladaptive coping strategies

These strategies are likely to result in unfavourable physical, mental or emotional outcomes for both the caregiver and the patient. The maladaptive methods identified included neglect of caregiving roles, failure to seek help, social isolation and persistent crying. Illustrative experiences shared by caregivers are reflected in the expressions presented below:

When I am tired, I detach mentally or sometimes I sleep. She[patient] will be calling me but I will be asleep. (CG1, daughter, early 50s)

I don’t want to be disgraced by anyone. People might say, ‘when your mother got sick, I was the one who gave you money to care for her’. (CG11, daughter, late 30s)

Theme 4: recommendations to clinicians

Participants provided suggestions aimed at improving the quality of care for their dependents. These recommendations were based on their interactions with healthcare providers. According to the participants, there is a need for better communication and support from clinicians, particularly in areas related to treatment planning and caregiver education. Two subthemes emerged from this theme. The first subtheme was the quantity of medication together with review duration, and the second subtheme was the need for adequate education from healthcare professionals on the condition to enhance caregivers’ preparedness and competence.

Subtheme: quantity of medication and longer intervals between reviews

Caregivers expressed a preference for receiving medications in larger quantities to reduce the frequency of hospital visits. One caregiver specifically suggested extending the interval between visits to lessen the caregiving burden, noting that longer intervals between hospital visits would allow more time for income-generating activities.

It is the hospital that we appeal to. We have to come every month but if it is extended to 2 months, that would be helpful to us because within that time I can get a job. If she has enough medication, I can have enough time to work to get some income. (CG9, granddaughter, early 20s)

As for me, I suggest that because of her mobility issues and condition, we could be given a two month supply of medication to reduce the frequency of hospital visits. (CG10, daughter-in-law, late 30s)

Education on condition

Caregivers highlighted the need for education on glaucoma symptoms, particularly among older adults. One caregiver acknowledged that early visual issues are often dismissed as a normal part of ageing and emphasised the importance of public education to help individuals recognise these symptoms as potential signs of disease and seek medical care promptly.

At old age when they [glaucoma patient] complain about visual problems, we usually don’t pay attention to them. We usually say when you are aging, thing will change so it is normal. So you [clinician] have to educate the public about it. So if your mother at home complains about such visual problems don’t say it is aging but pay attention to it and bring her to the hospital. (CG8, granddaughter, early 30s)

Stress Process Model

The SPM was used to understand and organise caregivers’ lived experiences by illustrating how background characteristics (age, gender, education, marital status, occupation, relationship with the patient and duration of caregiving), primary stressors (practical challenges from declining vision) and secondary stressors (financial and emotional burdens affecting work, social life and finances) may have interacted to influence caregiving outcomes such as physical and mental health, quality of life and economic well-being.

Coping strategies, both adaptive (self-encouragement, religion and seeking support) and maladaptive (isolation, neglecting roles and crying), were also identified as important factors that may buffer or worsen the overall impact of these stressors on caregiver well-being.

Figure 1 illustrates the complex interaction between the various components of SPM in the context of this study. This interconnected process highlights how practical caregiving demands extend beyond task performance to influence caregivers’ emotional resilience and financial stability. Furthermore, the identification of both adaptive and maladaptive coping strategies underscores the dynamic role of coping as a mediator within the model, shaping how caregivers experience and respond to stressors.

Discussion

The study revealed that caregivers of patients with low-vision glaucoma undertake an extensive range of roles and responsibilities. Caregivers reported supporting patients with essential daily tasks (BADL) such as mobility, while also managing instrumental duties (IADL) including arranging transportation. Importantly, they also provide emotional support to help patients cope with the psychological impact of progressive vision loss. Similar findings have been reported in other studies, emphasising that caregiving for visually impaired individuals often involves a combination of physical and emotional support.²⁰ These similarities may reflect patterns of dependency associated with low vision, where declining functional abilities can increase reliance on others for both daily functioning and emotional reassurance. These findings may highlight the need for healthcare systems to recognise caregivers as vital partners in the continuum of glaucoma care. Therefore, providing training, clear instructions on medication and follow-up care and emotional support resources could strengthen their capacity to offer effective assistance to the patients.²¹

Our findings also indicated that the prominent challenge faced by caregivers was the practical difficulties involved in providing daily care for patients. These difficulties primarily reflected the substantial time investment and physical exertion involved in the caregiving duties. Notable among these duties are assisting with mobility, safeguarding their environment and offering continuous oversight. Patients with low-vision glaucoma experience a profound decline in their ability to perform activities of daily living independently and also an increased risk of falls.^{22 23} This decline significantly increases their dependence on caregivers for essential daily tasks. Caregivers therefore often have to dedicate substantial time and effort to support the patients, often around the clock. These demands combined with the lack of adequate physical assistance and the sheer time commitment required can quickly become overwhelming. This finding aligns with other studies demonstrating the highly practical and physically demanding nature of caring for individuals with visual impairment.^{6 10 18} Other studies even reported that long-term caregiving may increase the risk of declining physical health among caregivers.²¹ The consistency of these findings across different contexts can also be attributed to the similar functional limitations caused by glaucoma. These insights into the nature of their care may suggest the need for interventions that focus on caregiver rest, improved mobility support services and access to vision rehabilitation programmes. Addressing these practical challenges may not only improve caregiver well-being but also enhance the quality of care that patients receive.

Financial burdens also emerged as a significant caregiving challenge. Caregivers described significant financial strain arising from the cost of glaucoma medications, follow-ups and cost of transportation. Also included are indirect costs such as lost work hours and reduced productivity. Together, these expenses reportedly contribute substantially to the overall financial burden of caregiving. Previous studies have likewise shown that long-term management of glaucoma and other chronic conditions places a considerable financial strain on households, especially in low- and middle-income settings where the costs of care are predominately out-of-pocket.^{12 24} The similarity between the present findings and previous studies reflects the combined effect of the high cost of chronic disease management and limited financial support systems in many resource-constrained settings. These patterns may also suggest the potential value of policy-level interventions such as subsidies for glaucoma medications, expanded health insurance coverage and strengthened social protection programmes to reduce the economic burden on caregivers and prevent long-term financial vulnerability. Although financial burden emerged as a secondary challenge in our study, a previous study from south-west Nigeria reported financial strain as a major difficulty for family caregivers of ophthalmic patients.²¹ This difference may be due to the contrasting health financing mechanisms across the two contexts. Nearly all patients in our study were enrolled in the National Health Insurance Scheme, whereas caregivers in the Nigerian study faced the full cost of care through out-of-pocket payments.²⁵ This contrast underscores the critical role of effective health financing models in mitigating healthcare costs, particularly in low-income settings.

Our study also identified emotional burden as a secondary challenge, with caregivers reporting stress and emotional exhaustion arising from their caregiving responsibilities and from witnessing the progressive visual decline of their relatives. This emotional distress is compounded by the unpredictability of patient needs, lack of adequate social or community support and concerns about the long-term future. These findings are consistent with other studies which also documented high rates of emotional strain, stress and symptoms of depression among caregivers of visually impaired individuals.^{24 26 27} These studies also showed that female caregivers, who frequently assume primary caregiving responsibilities, are more susceptible to emotional distress. This pattern has been consistently reported in both Western and non-Western populations.^{27 28} This finding suggests that emotional burden may be a common experience among caregivers regardless of cultural or socioeconomic differences.^{27 28} Hence, psychosocial interventions such as counselling, caregiver support groups, stress-management programmes and routine mental health screening may offer benefits if integrated into care pathways for patients with glaucoma and their caregivers.

The study also revealed a range of coping strategies adopted by the caregivers to lessen the negative effects of caregiving burdens. Adaptive approaches including seeking family and community support, drawing strength from faith, engaging in physical activity and using self-motivation helped many caregivers maintain emotional stability. In contrast, maladaptive responses such as withdrawal and avoidance were also reported and were likely to be associated with poorer well-being and reduced caregiving capacity.²⁹,³¹ Similar coping behaviours have also been documented among caregivers of other chronic conditions and are known to influence the health outcomes of both patients and caregivers.^{12 29} The consistency of these findings across studies may reflect the shared nature of chronic caregiving stress, and may indicate that caregivers often rely on social, spiritual and emotional resources when overwhelmed. This also highlights the limited accessibility to formal caregiver support across many settings including Ghana. Studies have therefore suggested that interventions designed to support caregivers such as vision rehabilitation programmes, support groups and caregiver education can help alleviate these pressures and build resilience among caregivers.³²,³⁴

Our study also found that caregivers preferred longer intervals between scheduled reviews, larger quantities of medications and enhanced education from healthcare providers regarding the disease, its management and treatment expectations.

The costs associated with transportation and the loss of productive time have been shown to significantly contribute to the overall economic burden of glaucoma management.³⁵,³⁷ Therefore, increasing the duration between follow-up appointments and dispensing medications in greater quantities may allow caregivers to recoup lost productive time while simultaneously lowering the cost of transportation associated with frequent hospital attendance. Although some patients may require more frequent monitoring of intraocular pressure due to the risk of disease progression, the recommendations provided by caregivers may have potential implications for reducing the overall burden of care, particularly the financial costs. It is therefore important that follow-up schedules are tailored to the specific clinical needs of each patient to minimise both direct and indirect costs and to reduce caregiver fatigue.

Limitations of the study

This study has several limitations that should be considered when interpreting the findings. It was conducted in a single institution using one-time interviews, which may have limited the depth and diversity of perspectives. The absence of comprehensive clinical data restricts the ability to relate caregiver burden to disease severity. Potential social desirability and interviewer effects may have influenced participants’ responses, while selection bias may have occurred as caregivers recruited during clinical visits were likely those more actively involved in care. In addition, the relatively small number of male caregivers limits the representation of male caregiving experiences. Furthermore, although interviews were conducted and transcribed in Akan (Twi) to ensure participant comfort and accurate expression, translation into English for analysis may have led to subtle loss of meaning or nuances. Despite these limitations, the study provides valuable insight into the lived experiences of informal caregivers of patients with glaucoma-related low vision in this setting.

Conclusion

This study highlights the multifaceted challenges faced by informal caregivers of patients with glaucoma-related low vision, encompassing practical, emotional and financial burdens. Caregiving is characterised by sustained supervision, emotional strain and long-term adaptation, often in the context of limited formal support. These findings may suggest the need for integrated care approaches that incorporate caregiver support, patient education and accessible eye care services. Addressing these gaps may help reduce caregiver burden, improve resilience and may potentially enhance the overall care experience for both patients and their caregivers.

Data availability statement

Data are available upon reasonable request.