Association between spinal muscular atrophy type and delayed diagnosis and the risk of spinal deformity in Indonesian patients.

BACKGROUND: Spinal muscular atrophy (SMA) is a genetic disease that causes muscle weakness and atrophy. Delayed diagnosis can lead to loss of motoric functions, which may then progress to deformities such as thoracolumbar scoliosis, pelvic obliquity, and hip subluxation/dislocation. The lack of information or limited experience among healthcare providers and costly genetic tests can cause delayed diagnosis. The current study aimed to assess the characteristics of patients with SMA. Moreover, the association between SMA type and delayed diagnosis and the risk of spinal deformity in the Indonesian SMA Community was evaluated. METHODS: This was a cross-sectional study performed on 53 patients diagnosed with SMA. Data about patients' characteristics were obtained from the Indonesian SMA Community using a questionnaire in August 2019. The information included age, sex, SMA type, age at suspicion and definite diagnosis of SMA, and presence of spinal deformities. Then, descriptive analysis and logistic regression analysis were performed, and the Kruskal-Wallis test and the Chi-square test were utilized. RESULTS: The median age of patients suspected of SMA was 24 months. A definitive diagnosis of SMA was obtained at 36 months. Further, 43% of patients presented with SMA type 2 and 58% with spinal deformities. Results showed a positive correlation between time interval between suspicion and definite diagnosis of SMA and the risk of spinal deformities (B = 0,07; p > 0.05). Delayed diagnosis was more common in SMA type 3 than in SMA types 1 and 2, and SMA type 2 was correlated with a twofold risk of spinal deformities (p = 0.03; prevalence ratio = 2.09). CONCLUSIONS: SMA type 2 is associated with a twofold risk of spinal deformities. Delayed diagnosis is more common in SMA type 3 than in SMA types 1 and 2. Moreover, there was an association between the time interval between suspicion and definite diagnosis of SMA and the risk of spinal deformities in patients with SMA.

Workplace wellness programs for working mothers: A systematic review.

BACKGROUND: This systematic review aimed to uncover the evidence and benefits of employers' commitment to delivering workplace wellness programs for working mothers. METHODS: The articles published in PubMed, Embase, Scopus, and AgeLine-Medline databases between 2012 and 2021 were searched to evaluate the workplace wellness programs for working mothers with at least one resultant wellness or wellbeing (e.g., physical health, less stress, mental health, burnout, depression, smoking, bullying, alcohol consumption, overweight), work-life balance outcome, or job satisfaction. RESULTS: Eight studies that met the criteria were retrieved from databases. They showed some effective workplace wellness programs that can reduce depression, stress, and burnout, improve mental health, healthy behaviors, work-family balance and work-life balance. Working mothers participating in a workplace wellness program generally gain some benefits; one of which is reduced stress typically related to childcare, economic, and personal health issues. CONCLUSIONS: The implementation of workplace wellness programs for working mothers showed positive effects on their health problems and health costs. These eight studies revealed that workplace wellness programs specifically designed for working mothers can lead to time efficiency by holding the programs in or near the workplace and implementing them during the workdays. This greatly suits the conditions of many working mothers whose limited time and energy to balance the household, family and work tasks.

Translation and validation of Indonesian version of Pediatric Quality of Life Inventory™ (PedsQL™) Neuromuscular Module.

BACKGROUND: The Pediatric Quality of Life™ 3.0 Neuromuscular Module is an instrument to assess health-related quality of life (HRQoL) among children with neuromuscular diseases (NMDs) aged 2-18 years. This study aimed to determine whether the PedsQL™ 3.0 Neuromuscular Module Indonesian Version is valid and reliable. METHODS: This study used the Indonesian translation of the PedsQL™ 3.0 Neuromuscular Module after getting formal permission from the inventor, and the translation process followed the Mapi linguistic translation guidelines. This study administered the PedsQL™ 3.0 Neuromuscular Module Indonesian Version to 84 parents and 71 children. In addition, we used the Rasch model to analyze the psychometric properties. RESULTS: The reliability of the total scale of the PedsQL™ Neuromuscular Module Indonesian Version shows good to very good criteria. On the parent proxy-report, Cronbach alpha was 0.95, person reliability was 0.84, item reliability was 0.93, person separation was 2.32, item separation was 3.61, person strata separation was 4 levels, and item strata separation was 5 levels. On the child self-report, Cronbach alpha was 0.93, person reliability was 0.81, item reliability was 0.81, person separation was 2.08, item separation was 2.06, person strata separation was 3 levels, and item strata separation was 3 levels. The total scale of the PedsQL Neuromuscular Module Indonesian Version shows fair to good construct validity in parent proxy-report (explained variance 51.9%; unexplained variance 8.4%) and child self-report (explained variance 40.9%; unexplained variance 12.6%). There were no misfit items in the parent proxy-report (infit 0.66-1.49; outfit 0.51-1.81; point measure correlation 0.36-0.93) and child self-report (infit 0.53-1.65; outfit 0.50-1.73; point measure correlation 0.31-0.90) identified by the Rasch models. CONCLUSIONS: The PedsQL™ 3.0 Neuromuscular Modul Indonesian Version is a valid and reliable instrument in measuring HRQoL in Indonesian children with neuromuscular diseases.

A Qualitative Study on Family Role in the Care and Prevention of Acute Respiratory Infection Among Children in Primary Health Care.

Background. Acute Respiratory Infection (ARI) is a common reason that parents seek help to primary health care. In 2016, almost 65% (64.4%) pneumonia and less than 36% (35.6%) non-pneumonia cases were found among the children in Malang. Members of families have important roles to play in individual's health, especially the children. The aim of this study was to explore the roles of family members in the care and prevention of children with ARI. Method. This was a qualitative study, with a phenomenological approach involving 12 informants. An in-depth interview was conducted on each informant having children with recurrent ARI during a space of 3 months in the primary health care. Information collected from the interviews were transcribed and analyzed into different themes. Results. The 4 themes identified include ARI in children, parent roles, influences of family members, and family problems. Different styles of parenting were established between the fathers and mothers also between the mothers and grandmothers on preventing ARI. The behavior of other family members impact both on the risk and prevention of ARI. Some of the identified problems capable of affecting children's health include inability to control the children, unstable income and the stressed condition of most mothers. Conclusion. Behavior of family members impacts on the prevention of ARI among the children. Problems within the family could affect the mothers' or caregivers' psychology, which might in turn impact on the care given to the children infected with ARI or in preventing it.

The role of primary healthcare physicians in violence against Women intervention program in Indonesia.

BACKGROUND: Violence against women (VAW) has many impacts on health, but the role of the primary healthcare physicians in the intervention program is lacking. This research aimed to explore the primary healthcare physician role in a comprehensive intervention program of VAW in Malang City, Indonesia. METHODS: This qualitative research was conducted using a phenomenology approach. A focused group discussion followed by in-depth interviews were carried out involving six primary healthcare physicians in Puskesmas (Primary Healthcare Center) and two stakeholders. Legal document related to VAW was reviewed to measure up the role of the primary healthcare physicians. RESULT: Our study revealed that the role of physicians in primary healthcare centers on the VAW intervention program was limited. This was due to the insufficient knowledge of the physicians on the VAW program, physicians' constraint on counseling skill, unsupportive infrastructure, and a limited number of physicians in Puskesmas. Some barriers related to the VAW program management were also discovered and needed intervention at the decision-maker level. CONCLUSION: The role of primary healthcare physicians in the comprehensive intervention of the VAW program is not optimum. The source of the problem involves the physician capability and program management aspects in all levels of decision-makers. Local government awareness and commitment are needed to improve the overall management of the VAW intervention program in this city.