Browsing by Author "Freeman, Nicola"

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    Open Access
    Exploring the lived experiences of primary caregivers of children with visual impairment from a low- and middle-income context in the Western Cape Province
    (2024) Abrahams, Zuleikha; Mckenzie, Judith; Freeman, Nicola
    Few studies explore the experiences of Primary Care Givers and families with a child with visual impairment from low-and-middle-income, and least so, from South Africa (SA). It is important to understand this phenomenon so that interventions can be tailored to suit their needs and shortcomings. Services and support for such families are difficult to access or in some cases non-existent. The main responsibility often rests on these families, and the effect of this in low and middle income contexts is complex and poorly understood. In South Africa, and more specific in the Western Cape Province, support for parents and services for children with visual impairment are limited. The aim of the study was to explore the lived experiences of primary caregivers, from Western Cape Province, after their child was diagnosed with visual impairment at a paediatric tertiary hospital. The purpose of this study was to find out the responses of the family in respect of psychosocial challenges, their needs, what support they received and accessed, as well as the efficiency and effective availability of these services. The phenomenon that involves features of the person as a psychosocial being, requires an understanding and exploration of lived experiences to facilitate the complexity of the disability conundrum. Hence, a qualitative research approach using an interpretive phenomenological design was adopted. Purposive sampling was used to select six participants from the WCP whose child was diagnosed at a paediatric tertiary hospital. Data was collected through semi-structured interviews. Interviews were digitally recorded and later transcribed verbatim. Interpretive phenomenological analysis of data involved an inductive and deductive approach, coding for themes and categories emerging from the data. The literature review explored what was found about primary caregivers, parents and families and their experiences at the diagnosis of their child with visual impairment. It showed what needs, services and supports other studies identified on parents with a child with visual impairment or disability in various income contexts globally. Information about services and support in the health and educational sectors, and at the local and national governmental institutions in South Africa was provided. The findings of the study illustrated four themes. Firstly, the experiences of primary caregivers of a child with visual impairment after diagnosis. Secondly, Expressed concerns and needs. Thirdly, Services and support accessed. Fourth, Changes and concerns for the future. The ecological framework illustrated the microsystem, mesosystem, exosystem and macrosystem where services and support were needed. These various social environments also illustrated formal and informal social services and support that eased caregiving, participation and inclusion for PCGs of children with visual impairment. The Discussion chapter interpreted the findings in terms of current literature and developed a composite of the findings to further suggestions from primary caregivers that led to the recommendations of this study. The study concluded with recommendations that Strong psychosocial support services for a primary caregiver and family whose child is diagnosed with visual impairment are needed. Referrals for ample formal and informal support services from these systems and sectors in social, economic and political environment must be an immediate response when health professionals relate the news of the visual impairment so that information, counselling and emotional support assist the primary caregiver and family through the initial trauma. Furthermore, there should be measures to monitor the well-being of these primary caregivers and their families to ensure that healthy family systems are maintained.
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    Open Access
    Retinopathy of prematurity screening criteria and work load implications at Tygerberg Children's Hospital, South Africa: A cross-sectional study
    (2016) Visser-Kift, Elsimé; Myer, Landon; Freeman, Nicola; Cook, Colin
    High-income country ROP Screening guidelines are not appropriate for middle-income countries and screening requirements may vary even between units within one city. This study aimed to determine optimal ROP screening criteria, and its workload implications, for Tygerberg Children's Hospital (TCH), South Africa. Methods This cross-sectional study included premature infants screened for ROP, at TCH (1 January 2009 to 31 December 2014). Logistic regression for prediction and classification were performed. Predictors were birth weight (BW) and gestational age (GA). Endpoints were clinically significant ROP (CSROP) and Type 1 ROP (T1ROP).
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    The factors that determine successful follow up of children diagnosed with incurable blindness using health information collected during their visits to the Red Cross Childrens Hospital
    (2025) Mjwana, Noluthando; Minnies, Deon; Opare, Abraham; Freeman, Nicola
    Background: Most children diagnosed with incurable blindness will need access to health, education, and social services, to support them during their potentially high number of disabled life years. The accuracy of key informants' contact information is therefore essential to ensure that proper follow up is carried out, so that the necessary services are available to them. We investigated the factors determining successful follow up of children diagnosed with incurable blindness during their visits to the Red Cross War Memorial Children's Hospital (RXH) in Cape Town, using their health information. Methods: This was a quantitative cross-sectional study, using data from a cohort of blind children who were referred to a blind school from 2011 to 2020, a total of 178 children, from 0 years up to 12 years of age. Contact information was collected from the children's hospital files at the Red Cross Children's Hospital. Using the telephone numbers obtained, calls were made, and the results of the calls were recorded. For those calls that were responded to, an introduction of who the researcher is, was made, then the purpose and explanation for the call was provided and the respondent was informed that participation is voluntary and that the interview can be stopped at any time should the respondent wish to do so. After that, consent to proceed with an interview was requested, and after it was granted, the researcher explained to the respondent that a few questions about the child's whereabouts, and basic information about health, education and social activities will be asked. A second round of calls were made, using an identifiable cell phone number. This was to ensure that for all the parents or guardians with whom contact was made but were not reachable for any reason during the initial round, a second attempt was made to reach them. Lastly, the nurse of the blind school was interviewed to triangulate the results of the telephonic interviews. The interview with the nurse was to confirm, whether the children on the data list were registered with the school as well as to ascertain the support services that 2 are on offer at the school for the blind. Results: The findings of the study indicated that of the total of 178 participants' folders checked, 127 (71%) folders did contain real and contactable telephone numbers, 10 (6%) folders had incorrectly recorded contact numbers, and 41 (23%) folders had no contact numbers as they were missing. Of the 127 folders with contactable numbers, only 29 (23%) of the key informants responded. Of these, 25 out of 29 (86%) confirmed that the children were alive with 4 (16%) mortalities reported. With regards to information on various support services offered, 7 out of 25 (24%) confirmed to have access to health services, which included hospital visits on scheduled appointment dates, with 16 (64%) receiving support for social services such as grants for relief on financial burden and 15 (60%) of the children are in receipt of education support services or attending special schools. Conclusion: As evidenced by the low response rate, contact with most of the parents was not achieved, resulting in less data to inform us of successful follow of the children. This lack of success can be attributed to the high inaccuracy in the capturing of the contact details, in the missing contact numbers as well as calls for some contacts which were no longer in-service. While little can be done with numbers being out of service, the incorrectly captured information coupled with lack of contact numbers requires that further scrutiny is applied to the patient folders when recording their information and that regular checks and updates are done to ensure that contact numbers are available and that they are accurate.