Assessing the Role of the Family/Support System Perspective in Patients With Glaucoma

Shtein, Roni M.; Newman-Casey, Paula Anne; Herndon, Leon W.; Coleman, Anne L.; Lee, Paul P.

doi:10.1097/ijg.0000000000000332

Cited by 11 publications

(8 citation statements)

References 32 publications

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“…Though the burden of having a child with glaucoma with easily evident and recognizable signs of poor vision is high, recognition in such instances is rarely the first step towards a cure or treatment, owing to social, economic, or cultural constraints. [ 9 10 11 14 15 20 21 22 23 ] The primary contact as expected was the mother who was the first to notice eye abnormality in 45% cases while school teachers noticed the eye condition in only 18% cases. It was worth noticing that mothers explained about the lack of cooperation from the husband or family elders despite noticing the eye abnormality early.…”

Section: Discussionmentioning

confidence: 71%

Perspectives and impediment to eye care in caregivers of children with childhood glaucoma

Rao

Raj

Padhy

et al. 2020

Indian J Ophthalmol

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Purpose: To study the perceptions, attitude, knowledge of the disease, and impediments to seeking early eye care in caregivers of children with childhood glaucoma. Methods: The study included new and old children diagnosed with childhood glaucoma (which included congenital glaucoma and developmental glaucoma) at a tertiary hospital of east India. The caregivers were administered a video-based questionnaire through open-ended questions intended to collect demographic and other personal details such as caregiver's socioeconomic status, knowledge, attitude towards eye health, and other social barriers. The responses were analyzed using thematic analysis technique into different buckets such as social status, knowledge/attitude, and sociocultural beliefs while individual responses in each bucket were analyzed. Results: Of a total of 43 patients included, >75% of patients came from places >200 km from the eye care centre with >50% coming from >300 km. Most patients presented either <1 year (42%, n = 18) or >3 years (52%, n = 22) with only 2% ( n = 3) presenting between 1–3 years of age. The mother was the first person of contact to diagnose the eye abnormality in >45% of patients. Comparing differences among children who presented within 1 year of first diagnosis and those that presented later, caregivers hailing from long-distance >200 km from an eye care center, monthly income <5000 INR, and those with social/cultural taboos (like children's eyes should not be operated) were more likely to seek delayed eye care for congenital glaucoma, P < 0.001. Conclusion: Impediments in seeking early eye care for blinding diseases in children (including distance from the nearest hospital, low socioeconomic constraints, and sociocultural beliefs/taboos) mandate serious policies towards improving education about eye disease and eye health among caregivers.

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Section: Discussionmentioning

confidence: 71%

Perspectives and impediment to eye care in caregivers of children with childhood glaucoma

Rao

Raj

Padhy

et al. 2020

Indian J Ophthalmol

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“…For example, caregivers of individuals with both VI and dementia have highlighted respite services and specific advice on managing visual hallucinations as necessary forms of support. 30 In contrast, the caregivers in Shtein et al's study played a limited role in the support of their loved one with glaucoma, unless the disease progressed to a late stage.. 31 Even among caregivers of individuals with the same eye disease, caregivers express highly varying levels and kinds of unmet needs for themselves and the care recipients. 32 In a survey of parents of children with cortical or cerebral VI, participants…”

Section: Imentioning

confidence: 96%

“…33 Indeed, it is important to note that adults with VI may have different views from their relatives about the value of education and information about the condition, both in terms of what kinds of information are helpful and how information is communicated. 31 Additionally, caregivers may struggle to openly disclose their needs for information or support in the presence of the person with VI. 24 This suggests that interventions focused on simultaneously supporting both adults with VI and caregivers need to build in careful planning and facilitation, in order to balance meeting clients' and caregivers' shared and divergent needs.…”

Section: Balancing Support For Caregivers and Ivimentioning

confidence: 99%

What support is beneficial for caregivers of individuals with vision impairment?

Enoch

Dickinson

Subramanian

2021

Clinical and Experimental Optometry

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“…For example, patients can report significant problems with activities of daily living, such as driving, reading and mobility as their VF worsens [1,2]. Such difficulties may lead to a reliance on a spouse, partner, close friend or family member for support [3,4]. A person caring for someone with a chronic or disabling condition, but not in a formal capacity, can be termed an informal caregiver.…”

Section: Introductionmentioning

confidence: 99%

Taking the strain? Impact of glaucoma on patients' informal caregivers

McDonald

Turnbull

Chang

et al. 2019

Eye

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What was known before  Chronic open angle glaucoma (COAG) can cause difficulties with activities of daily living such as driving and mobility.  Other chronic eye diseases, for example, age related macular degeneration lead to an increase in reliance on family support networks; this is termed informal caregiving. What this study adds  The first to estimate caregiver strain in a sample of COAG caregivers using a validated instrument.  Informal caregiver strain is negligible in most patients consecutively sampled from a glaucoma clinic in England.  ICG strain becomes inflated in patients with advanced visual field (VF) loss in COAG.  ICG strain increases moderately with worsening VF's but in our sample some of this could be explained by worse general health.

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Assessing the Role of the Family/Support System Perspective in Patients With Glaucoma

Cited by 11 publications

References 32 publications

Perspectives and impediment to eye care in caregivers of children with childhood glaucoma

Perspectives and impediment to eye care in caregivers of children with childhood glaucoma

What support is beneficial for caregivers of individuals with vision impairment?

Taking the strain? Impact of glaucoma on patients' informal caregivers

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