Family Functioning and Low Vision: A Systematic Review

Bambara, Jennifer K.; Wadley, Virginia G.; Owsley, Cynthia; Martin, Roy C.; Porter, Chebon A.; Dreer, Laura E.

doi:10.1177/0145482x0910300303

Cited by 56 publications

(38 citation statements)

References 40 publications

(60 reference statements)

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“…As the physical functions of patients declined because of the visual dysfunction, the family members would become the main source fulfilling their physical functions and providing emotional and social support. Family members also participated into the vision rehabilitation of the patients, which had an important impact on the health status and rehabilitation results of the patients 27. Therefore, family members influenced the decision making of the patients and might even directly make decisions for the patients.…”

Section: Discussionmentioning

confidence: 99%

Patient experience of treatment decision making for wet age-related macular degeneration disease: a qualitative study in China

et al. 2019

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ObjectivesThis study aimed to investigate the experience of patients with wet age-related macular degeneration (wAMD) in treatment decision-making process.DesignA descriptive qualitative study was designed by using semistructured interviews, and the data analysis was conducted with the thematic analysis approach.Participants and settingA convenient and purposive sample of 21 participants diagnosed with wAMD was recruited from May 2018 to September 2018. The study was conducted in the Eye Clinic of Southwest Hospital of Army Medical University in Chongqing located in the southwest of China.ResultsThe mean age of the participants was 64.48 years (ranging 50–81 years), and the duration of the disease ranged from 6 months to 48 months. Four major themes were identified from the original data analysis. These themes included facing the darkness (choosing from light and darkness and living in pain), constraints on decision making (doctor-oriented decision making, inadequacy of options and time), weighing alternatives (family influence, financial burden and maintaining social function) and decision-making support (professional decision-making assistance and peer support).ConclusionThis is a qualitative study attempting to explore the patient experience of treatment decision making for wAMD disease in China. Previous literature has focused on treatment effect and symptoms, rather than the individual experience and the wide contexts from a sociocultural perspective. Further studies, such as cross-sectional studies, can be used to describe the status and determine the influencing factors of decision0making process, so as to develop an impact factor model of decision making and to formulate an intervention for patients with wAMD.

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Section: Discussionmentioning

confidence: 99%

Patient experience of treatment decision making for wet age-related macular degeneration disease: a qualitative study in China

et al. 2019

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“…Caregivers with concurrent psychiatric comorbidities were not formally excluded and this may have also confounded our results. Fourth, we did not look at social problem-solving abilities which have been shown to be correlated with caregiver burden and depression [ 28 ], namely, a negative orientation to problem-solving (believing one cannot solve a problem no matter how hard they try), impulsive/careless outlook (proceeding with the first idea that comes to mind when trying to solve a difficult problem), and an avoidant outlook (procrastinating to solve problems that occur in one's life). Fifth, we did not have a comparison group in this study to assess if there were differences specific in this sample regarding burden and depression among caregivers of legally blind or low vision patients and similar caregivers of patients who were not legally blind or did not have low vision.…”

Section: Discussionmentioning

confidence: 99%

Burden and Depression among Caregivers of Visually Impaired Patients in a Canadian Population

Khan

Braich

Rahim

et al. 2016

Advances in Medicine

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Purpose/Background. This study reports the degree of burden and the proportion at risk for depression among individuals who provide care to visually impaired patients. Study Design. This is clinic-based, cross-sectional survey in a tertiary care hospital. Methods. Caregivers were considered unpaid family members for patients whose sole impairment was visual. Patients were stratified by vision in their better seeing eye into two groups: Group 1 had visual acuity between 6/18 and 6/60 and Group 2 were those who had 6/60 or worse. Burden was evaluated by the Burden Index of Caregivers and the prevalence of being at risk for depression was determined by the Center for Epidemiologic Studies Depression scale. Results. 236 caregivers of 236 patients were included. Total mean BIC scores were higher in Group 2. Female caregivers, caregivers providing greater hours of care, and caregivers of patients who have not completed vision rehabilitation programs are at higher risk for depression.

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“…It is also important to consider the impact of vision impairment on family members of the individual living with AMD. The role of family members in providing low vision and psychological support for individuals with vision loss has received attention in the literature, however research which focuses on the experiences of and coping strategies used by the family members themselves is lacking (Bambara et al, 2009). There is evidence to suggest that family members providing care for visually impaired adults may be at risk of psycho-social issues and depression (Bambara et al, 2009b).…”

Section: Discussionmentioning

confidence: 99%

What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research

Bennion

Shaw

Gibson

2012

Social Science & Medicine

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Age Related Macular Degeneration (AMD) is the leading cause of registerable blindness with a high medical and societal cost burden. Much of the research examining experiences of living with AMD has been conducted independently with small sample sizes and has failed to impact on practice. Meta-synthesis of qualitative research can improve the understanding of the experience of living with AMD by drawing together findings of qualitative studies. This article presents a systematic review and meta-synthesis of qualitative studies investigating the experience of AMD (literature searched up to April 2012; published studies identified range from 1996 to 2009). The review highlights themes relating to: functional limitations, adaptation and independence; feelings about the future with vision impairment; interaction with the health service; social engagement; disclosure; and the emotional impacts of living with AMD. Attention to the experience of living with AMD can help us to better understand the needs of patients. This meta-synthesis aimed to bring together the findings of qualitative research studies and highlights important areas for consideration when caring for patients with AMD. Our findings suggest that a holistic approach to service provision and support for AMD is needed which takes into account individuals' needs and experiences when coping with and adjusting to living with AMD. This support should aim to reduce stigma, increase social engagement, and develop the psychological resources of patients with AMD.

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Family Functioning and Low Vision: A Systematic Review

Cited by 56 publications

References 40 publications

Patient experience of treatment decision making for wet age-related macular degeneration disease: a qualitative study in China

Patient experience of treatment decision making for wet age-related macular degeneration disease: a qualitative study in China

Burden and Depression among Caregivers of Visually Impaired Patients in a Canadian Population

What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research

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