Background Improvement in medical management has enabled transfusion dependent thalassaemia (TDT) patients to survive beyond childhood, building families, and contributing to the labour force and society. Knowledge about their adult life would provide guidance on how to support their needs. This study aims to explore the general well-being of adults with TDT, their employment status and challenges. Methods This study recruited 450 people with TDT, aged 18 and above, of both genders through all regional Thalassaemia societies in Malaysia and from the two participating hospitals, over five months in year 2016. A self-administered questionnaire including ‘Healthy Days Core Module’, WHOQOL-BREF and employment measurements was used. Multiple linear regression models were fitted with associations adjusted for several potential confounders. Results A total of 196 adults with TDT responded to the survey (43.6% response rate). Almost half (45%) had comorbidities and 9% suffered multiple complications: bone-related (13%), hormonal (12%), cardiac (3%) and infections (2%), resulting in 23% seeking treatment more than twice monthly. Within a month, they suffered from at least three days with poor physical and or mental health and their normal daily activities were disrupted up to three days. 36% were jobless and 38% of those with a job were receiving salaries below RM1000. The mean WHOQOL-BREF score (mean (SD)) was: physical health 62.6 (15.5), psychological health 64.7 (15.7), social relationship 64 (15.9), environmental health 60.8 (16.7). Having days with mental issues, financial status, education level, ethnic and marital status were main factors affecting QOL scores. Open questions showed dissatisfaction with health service provision, conflicting judgement in prioritising between health and job, and poor public empathy. Conclusion The adults with TDT perceived their health as good and had less unhealthy days when compared with people with other chronic diseases. However, some perceived themselves to be facing more life disruption in a rather non-supportive community and that health services do not meet their needs. Future qualitative studies are needed to focus on their perceived needs and to look for more tailored supportive approaches.

Introduction Ethnic Malaysian Chinese used to observe the 1-month postpartum confinement period at home and many families would engage a traditional postpartum carer to help care for the mother and newborn. A recent trend has been the development of confinement centres (CCs) which are private non-healthcare establishments run by staff not trained in health care. Concerns about hygiene in CCs arose after infections were reported. We describe the practice of hand hygiene observed in CCs, the availability of resources for hygiene, and the prevalence of health-related problems in CCs. Methods This is a cohort study of ethnic Chinese mothers intending to breastfeed their healthy infants. They were recruited post-delivery along with a comparison group who planned to spend their confinement period at home. After their 1-month confinement period, they were contacted for a structured telephone interview about their experience. To avoid any alteration in behaviour, mothers were not told at recruitment that they had to observe hygiene practices. Multiple logistic regression was used to assess the effect of place of confinement on rates of infant health problems. Results Of 187 mothers, 88(47%) went to 27 different CCs while 99(53%) stayed at home. Response rates for the 1-month interviews were 88%(CC) versus 97%(home). Mothers in CC group stayed in one to four-bedded rooms and 92% of them had their baby sleeping separately in a common nursery described to have up to 17 babies at a time; 74% of them spent less than six hours a day with their babies; 43% noticed that CC staff had inadequate hand hygiene practices; 66% reported no hand basins in their rooms; 30% reported no soap at hand basins; 28% reported inexperienced or inadequate staff and 4% reported baby item sharing. Among the mothers staying at home, 35% employed a traditional postpartum carer for her baby; 32% did not room-in with their babies, but only 11% spent less than 6 hours a day with their babies. Of mothers who employed traditional postpartum carers, 32% did not know if their carer washed hands after changing diapers and 18% reported that their carer did not. Health problems that were probably related to infection (HPRI) like fever and cough were similar between the groups: 14%(CC) versus 14%(home) (p = 0.86). Multiple logistic regression did not show that CCs were a factor for HPRI: aOR 1.28 (95% CI 0.36 to 4.49). Three mothers reported events that could indicate transmission of infection in CCs. Conclusion We found unsatisfactory hygiene practices in CCs as reported by mothers who spent their confinement period there. Although we were not able to establish any direct evidence of infection transmission but based on reports given by the mothers in this study, it is likely to be happening. Therefore, future studies, including intervention studies, are urgently needed to establish an appropriate hygiene standard in CCs as well as the best method to implement this standard. Training CC staff with hygiene knowledge so that they can be empowered to contribute to the development of these standards would be important.

Background Improvement in medical management has enabled transfusion dependent thalassaemia (TDT) patients to survive beyond childhood, building families, and contributing to the labour force and society. Knowledge about their adult life would provide guidance on how to support their needs. This study aims to explore the general well-being of adults with TDT, their employment status and challenges. Methods We contacted all regional Thalassaemia societies in Malaysia to invite TDT members aged 18 or over to participate. Participants were also recruited from the two participating hospitals. A self-administered questionnaire including ‘CDC Healthy-days’, WHOQOL-BREF and employment measurements was used. Multiple linear regression models were fitted with associations adjusted for several potential confounders. Results Of the 196 participants, almost half (45%) had comorbidities and 20% suffered multiple types: bone-related (13%), hormonal (12%), cardiac (3%) and infections (2%), resulting in 23% seeking treatment more than twice monthly. Within a month, they suffered from a mean 3.1 (SD 3.0) days of feeling unhealthy physically, a mean 2.6 (SD 3.5) days mentally unhealthy and their normal daily activities performance were affected for approximately 2.5 (SD 3.3) days - leading to 36% being jobless and 38% of those with a job receiving salaries below RM1000. The mean quality of life (QOL) score (mean (SD) for each QOL domain was: physical health 62.6 (15.5), psychological health 64.7 (15.7), social relationship 64 (15.9), environmental health 60.8 (16.7). Frequent activities limited days, being single, unwillingness to disclose thalassaemia status, presence of comorbidities, discrimination experiences and perceptions about employment difficulties were associated with lower QOL scores. Dissatisfaction with health service provision, conflicting judgement in prioritising between health and job, and poor public empathy were expressed. Conclusion Adults with TDT appeared to be fairly positive about their life in spite of high number of dysfunctional days and had perceptions that health services do not meet their needs. They continued to face life disruption in a rather non-supportive community. Supportive approaches and life-skill training are necessary where interventions should be started during childhood. Adjustment to health services should be considered.

Background The updated World Health Organisation (WHO) guideline recommends immediate kangaroo mother care (KMC) for all infants, particularly those born premature. However, its uptake and sustainability have been unsatisfactory. Therefore, we aimed to gain deeper insight into factors influencing the uptake of KMC practice in our setting, and thereby identify possible solutions for the development of relevant interventions to improve its adoption and make a KMC routine practice for all infants. Methods Using the Triandis model of social behaviour as our framework, we conducted key informant interviews with parents and healthcare providers. Trained interviewers conducted interviews with nine parents, recruited via purposive sampling. These parents were parents of preterm infants who had been introduced to KMC. Data was transcribed and analysed based on Triandis theory of social behaviour. This paper only reports the results of the parent interviews. Results Major findings were how positive feelings like warmth and contentment, the sense of parenthood with KMC, the benefits of KMC for their infant and parents being enablers for KMC uptake. Conversely, the lack of KMC awareness, the initial negative feelings such as fear, uncertainty and embarrassment, the prioritization of time for milk expression, overcrowding in the ward, lack of space and privacy, limited visiting hours, lack of support and poor communication resulting in misapprehension about KMC were major barriers. Conclusion A deeper understanding of the factors influencing the uptake of KMC using the Triandis behavioural model provided a way forward to help improve its uptake and sustainability in our settings. Trial registration This study was registered with the National Medical Research Registry (NMRR-17-2984-39191).

Ethnic Malaysian Chinese used to observe the 1-month postpartum confinement period at home and many families would engage a traditional postpartum carer (TPC) to help care for the mother and newborn. A recent trend has been the development of confinement centres (CCs) which are private non-healthcare establishments run by staff not trained in health care. Concerns about hygiene in CCs arose after infections were reported. We describe the practice of hand hygiene observed in CCs, the availability of resources for hygiene and to determine the prevalence of health related problems in CCs. Methods This is a cohort study of ethnic Chinese mothers intending to breastfeed their healthy infants. They were recruited post-delivery along with a comparison group who planned to spend their confinement period at home, then all were telephone interviewed after their 1-month confinement period about their experience. To avoid any alteration in behaviour, mothers were not told at recruitment that they had to observe hygiene practices. Multiple logistic regression was used to assess the effect of place of confinement on rates of infant health problems. Results Of 187 mothers, 88 (47%) went to 27 different CCs while 99 (53%) stayed at home. Response rates for the 1-month interviews were 88% (CC) versus 97% (home). Mothers in CC group stayed in one to four-bedded rooms and 92% of them had their baby sleeping separately in a common nursery described to have up to 17 babies at a time; 74% of them spent less than six hours a day with their babies; 43% noticed that CC staff had inadequate hand hygiene practices; 66% reported no hand-basins in their rooms; 30% reported no soap at hand-basins; 28% reported inexperienced or inadequate staff and 4% reported baby item sharing. Of mothers staying at home, 35% employed a TPC to care for her baby; 32% did not room-in with their babies, but only 11% spent less than 6 hours a day with their babies. 18% of mothers who employed TPCs reported that their TPC had unsatisfactory hand hygiene practices. Health problems that were probably related to infection (HPRI) like fever and cough were similar between the groups: 14% (CC) versus 14% (home) (p=0.86). Multiple logistic regression did not show that CCs were a factor for HPRI: aOR 1.28 (95% CI 0.36 to 4.49). Three mothers reported events that could indicate transmission of infection in CCs. Conclusion We found unsatisfactory hygiene practices in CCs as reported by mothers who spent their confinement period there. Although we were not able to establish any direct evidence of infection transmission but based on reports given by the mothers in this study, it is likely to be happening. Therefore, future studies, including intervention studies, are urgently needed to establish an appropriate hygiene standard in CCs as well as the best method to implement this standard. Empowering CC staff with hygiene knowledge so that they can be involved and contribute to the development of the development of these standards would be important.