Challenges of parenting children born before 24 weeks of gestation.

AIM: To assess experience of care, well-being of parents and children's development in a cohort of extremely premature infants born <24 weeks of gestation in Sweden from 2007 to 2018. METHODS: A survey based on multiple questionnaires answered by 124/349 (35.5%) parents. RESULTS: The median age of parents and children was 43 and 9 years, respectively; 74.2% were mothers. Parents expressed high healthcare satisfaction. Following discharge from neonatal care, the satisfaction with the infant's treatment, support from personnel and being respected as a parent significantly declined but remained high. The criteria for suspected developmental deviation according to the screening test early symptomatic syndromes eliciting neurodevelopmental clinical examinations-questionnaire was fulfilled by 84.3%, 55.6% had suspected avoidant restrictive food intake disorder and 47.9% had visual perception problems. Parents experienced severe fatigue (48.6%) despite strong social support and family self-efficacy. Economic support was provided to 30.6%, and 37.9% of children were enrolled in habilitation services. CONCLUSION: This study highlighted the substantial challenges faced by parents of infants born before 24 weeks of gestation, including decreased satisfaction post-discharge, fatigue and concerns about children's well-being. The findings underscore the need for comprehensive family-centred support and long-term multi-professional follow-up centres.

Analysis of age at detection and outcomes of dense unilateral congenital cataract surgery for children on the paediatric cataract register.

AIM: Analysis of age at time of detection and surgery of dense unilateral cataract and investigation of best-corrected visual acuity (BCVA) in a nationwide register-based cohort study, based on the routine of maternity ward eye screening. METHODS: Data were derived from the Paediatric Cataract Register (PECARE). All children (n = 54) diagnosed with dense congenital unilateral cataract between January 2007 and September 2014 who had surgery before 1 year of age, and for whom 5-year follow-up records were available, were included. RESULTS: The majority, 35/54 (65%), were detected and operated on before age 6 weeks and 30/35 (86%) were referred from maternity wards. Visual acuity (VA) ≥ 0.5 (decimal, 0.3 logMAR) was found in 7/53 (13%) of the cohort at age 5 years; further, 19 children achieved VA ≥ 0.1 (decimal, 1.0 logMAR) (36%) and 19 children VA < 0.05 (decimal, 1.30 logMAR) (36%). Ten-year follow-up records were available for 17/53 (32%) children; 1/17 (6%) achieved VA ≥ 0.5 (decimal, 0.3 logMAR), 4/17 (24%) VA ≥ 0.3-<0.5 (decimal, 0.52-0.30 logMAR), 3/17 (18%) VA ≥ 0.05-0.1 (decimal, 1.30-1.0 logMAR) and 10/17 (59%) VA < 0.05 (decimal, 1.30 logMAR). CONCLUSION: A total of 90% of the children were detected with cataract within 100 days of birth and 80% were operated on within this period. This study showed better visual acuity in those treated for dense unilateral cataracts than previously reported in an earlier Swedish cohort study.

The Core of Parents' Main Concerns When Having a Child With Cataract and Its Clinical Implications.

PURPOSE: To investigate the main concerns associated with being a parent of a child with cataract and how the parents deal with these concerns. DESIGN AND METHOD: Twenty-three parents; 6 mothers, 5 fathers and 6 couples with a child with cataract were included in this study. The parents included some with a personal experience of cataract and some without. Data was collected through 17 in-depth interviews, which were recorded and transcribed verbatim for analysis by the method of Grounded Theory developed by Charmaz. RESULTS: The Grounded Theory describes the parents' efforts to balance the child's inability and ability in order to maintain their social functioning and lead a normal life through a process comprising four main categories; Mastering, Collaborating, Facilitating, and Adapting. This process makes the path of transition evident, starting when the child is diagnosed and continuing for several years during her/his growth and development. CONCLUSION: The core of parent-child interaction is mastering the balance between the child's disability and ability in order to achieve the best possible outcome, visually and habitually. The interactions changes through a process towards adjustment and acceptance. All the parents emphasized that you do what you have to do to achieve a successful visual outcome of the child. CLINICAL IMPLICATIONS: The model provides a comprehensive understanding of parental self-management that can be used by a case manager, preferable a nurse, to pilot the parents through the process.

The prevalence of visual axis opacification in the Swedish Pediatric Cataract Register.

PURPOSE: To report on the occurrence of postoperative visual axis opacification (VAO) in children younger than 5 years of age operated for cataract in Sweden, and to analyse correlations with age at surgery and surgical method. METHODS: Data were derived from the Swedish Pediatric Cataract Register (PECARE). All children operated on between 1 January 2007 and 31 December 2020 were included. Follow-ups at 1, 2 and 5 years of age were analysed. RESULTS: Cataract surgery were performed on 770 eyes belonging to 549 children (n = 282 boys, 51.4%); 327/770 (42.5%) of the children underwent surgery before 3 months of age and 216/770 (28%) before 6 weeks of age. Data on 881 follow-up visits were registered. At the follow up-visits at 1, 2 and 5 years of age, VAO was present in 154/349 (44.1%), 41/323 (12.7%) and 25/208 (12%). The majority of the children with VAO underwent cataract surgery before age 6 months, with a predominance before age 2 months. Primary IOL was implanted in 601/770 (78%) of eyes; 40.8% had an acrylic one-piece lens, 31.8% had a bag-in-the-lens IOL, 21.9% were aphakic and 5.2% had an acrylic three-piece lens. Implantation of a bag-in-the-lens IOL was related to a significantly lower occurrence of VAO compared to other types of IOL, including aphakia (p < 0.0002). CONCLUSION: Our results are in accordance with the literature. Primary bag-in-the-lens IOL implantation before 2 years of age seems adequate and safe, with a low occurrence of VAO, and can thus be continued as routine in Sweden.

PECARE: Parental Feedback to Improve Congenital Cataract Care in Sweden.

PURPOSE: To analyze non-directed parental feedback to health care providers responsible for pediatric cataract care in Sweden. METHODS: A directed content analysis was used to analyze data consisting of text representing free comments provided by 40 parents. A deductive approach was employed by applying the model of balancing the child's inability and ability, which includes the categories mastering, collaborating, facilitating, and adapting. RESULTS: Parents lacked piloting and self-management support. They experienced an absence of partnership with the health care team and not being taken seriously. They also felt abandoned by health care, resulting in emotional distress. Parents highlighted the impact of their social network and the challenges involved in accepting and adapting to the changes in everyday life. CONCLUSIONS: This study emphasizes the consequences of the lack of a caring partnership with health care professionals. Because parents act as mediators of care to the child with congenital cataract, persistence on the part of parents and a family-centered approach are essential for the child's visual development. [J Pediatr Ophthalmol Strabismus. 2023;60(4):298-294.].

Parents' Reported Experiences When Having a Child with Cataract-Important Aspects of Self-Management Obtained from the Paediatric Cataract Register (PECARE).

Parents are a crucial part in the care of children with pediatric cataract. The aim of this study was to explore and explain sense of coherence, family self-efficacy, perceived social support, fatigue and parent reported experiences (PREM), in order to improve clinical care. Questionnaires were sent to the parents of children registered in the Swedish national Paediatric Cataract Register, PECARE, from 2006-2019 (n = 506). The response rate was 46% (n = 231), 185 mothers and 44 fathers with a mean age of 40.39 years (SD ± 6.41 years). In total, 38% of the parents reported severe fatigue, and mothers were more burdened than fathers. Sense of coherence was strongly related to fatigue, especially among parents of children with bilateral cataract. Mental fatigue and reduced motivation explained 45% of the variation in sense of coherence. Being taken seriously by the ophthalmological clinic explained over 60% of the variation in satisfaction with care when controlled for parents' age and gender. In conclusion, fatigue is important to take in consideration when interacting with parents of children with cataract, especially those with bilateral cataract. Being taken seriously is the key marker of satisfaction with care and support from professionals. In addition to fatigue, the parents' age and life situation affect how they perceive their own, as well as the professionals' effort, and should be considered when tailoring family-centered care.

Uncertainty and self-efficacy in parents of a child with congenital cataract-New implications for clinical practice.

AIM: The aim was an in-depth exploration of uncertainty and self-efficacy among parents of a child with congenital cataract by means of two theoretical frameworks to re-design family care. DESIGN: A directed content analysis in accordance with Hsieh & Shannon, using Mishel's theory of uncertainty and Bandura's self-efficacy theory. METHODS: Open-ended, in-depth interviews were conducted with 23 parents of a child with congenital cataract; six mothers, five fathers and six couples. RESULTS: In this novel study, self-efficacy was interpreted as the ability to balance between uncertainty and acceptance. The performance accomplishment of the child and parents bridges the gap between uncertainty and acceptance by reducing uncertainty, thus constituting the level of self-efficacy. Setbacks and complications increase uncertainty and reduce self-efficacy, thus performance accomplishment is a mediator of self-efficacy, while ability to master uncertainty determines the level of self-efficacy.