Mei Neni Sitaresmi

In Indonesia, oral rotavirus vaccines are available but not funded on the National Immunization Program (NIP). New immunization program introduction requires an assessment of community acceptance. For religiously observant Muslims in Indonesia, vaccine acceptance is further complicated by the use of porcine trypsin during manufacturing and the absence of halal labeling. In Indonesia, religious and community leaders and the Majelis Ulama Indonesia (MUI) are important resources for many religiously observant Muslims in decisions regarding the use of medicines, including vaccines. This study aimed to explore the views of religious and community leaders regarding the rotavirus vaccine to inform future communication strategies. Twenty semi-structured in-depth interviews were undertaken with religious leaders and community representatives from two districts of Yogyakarta Province, Indonesia. Thematic analysis was undertaken. Although there was recognition childhood diarrhoea can be severe and a vaccine was needed, few were aware of the vaccine. Participants believed a halal label was required for community acceptance, and maintenance of trust in their government and leaders. Participants considered themselves to be key players in promoting the vaccine to the community post-labeling. This study highlights the need for better stakeholder engagement prior to vaccine availability and the potentially important role of religious and community leaders in rotavirus vaccine acceptability in the majority Muslim community of Yogyakarta, Indonesia. These findings will assist with the development of strategies for new vaccine introduction in Indonesia.

Rotavirus has been identified as the most common pathogen associated with severe diarrhoea. Two effective vaccines against the pathogen have been licensed. However, many countries including Indonesia have yet to introduce the vaccine into their national immunisation programs. This study aimed to examine the attitudes of healthcare providers (HCPs) and other health stakeholders towards the pathogen and the vaccine. Semi-structured in-depth interviews were undertaken in two districts of Yogyakarta Province, Indonesia with nurses, midwives, primary care providers, pediatricians and other health stakeholders. Thematic analysis was undertaken. Fourteen interviews were conducted between August and October 2013. We identified that while participants do not consider diarrhea to be an important problem in Indonesia, they do acknowledge that it can be serious if not properly treated. While the majority had some level of knowledge about rotavirus, not all participants knew that a vaccine was available. There were mixed feelings towards the need for the vaccine. Some felt that the vaccine is not ranked as a priority as it is not listed on the national program. However, others agreed there is a rationale for its use in Indonesia. The cost of the vaccine (when sold in the private sector) was perceived to be the primary barrier impacting on its use. The high cost and the low priority given to this vaccine by the public health authorities are the biggest obstacles impacting on the acceptance of this vaccine in Indonesia. HCPs need to be reminded of the burden of disease associated with rotavirus. In addition, reminding providers about the costs associated with treating severe cases versus the costs associated with prevention may assist with improving the acceptance of HCPs towards the vaccine. Promotion campaigns need to target the range of HCPs involved in the provision of care to infants and pregnant women.

Background: Treatment refusal and abandonment are common causes of treatment failure in childhood acute lymphoblastic leukemia (ALL) in many developing countries. In most studies reasons for abandonment were based on the opinion of health‐care providers (HCP), very few studies have focused on the parental point‐of‐view. Aims of the study were to analyze the parents' reasons of abandonment and to ascertain the fate of children who abandoned treatment in a pediatric oncology centre in Yogyakarta, Indonesia.Methods: We conducted home‐visits to interview families of ALL patients, diagnosed between January 2004 and August 2007, who refused or abandoned treatment.Results: From January 2004 to August 2007, 159 patients were diagnosed with ALL of which 40 children (25%) refused or abandoned therapy. Thirty‐seven (93%) of these children were home‐visited. Reasons for abandonment were complex. Most parents mentioned several reasons. Financial and transportation difficulties were not the only, or even the main reasons, for abandonment. Belief of ALL incurability, experience of severe side effects and dissatisfaction with HCP were also important considerations. Most patients (64%) abandoned treatment during the diagnostic‐evaluation or remission‐induction phase. Of the 37 patients who refused or abandoned treatment, 26 (70%) children died, and 11 (30%) children were still alive, 2 of them more than 2 years after abandonment.Conclusions: Reducing treatment abandonment of childhood ALL in developing countries requires not only financial and transportation support, but also parental education, counseling and psychosocial support during therapy, improvement of quality‐of‐care and adequate management of side effects. Copyright © 2009 John Wiley & Sons, Ltd.

Noncompliance with prescribed medication has been associated with increased chance of relapse and poor outcome. Side effects may be an important cause of noncompliance. Fifty-one parents of children with acute lymphoblastic leukemia in a tertiary care hospital in Indonesia were interviewed about their perception of side effects and their impact on treatment noncompliance and daily activities. A symptom checklist assessing 13 common symptoms was used to examine side effects. During chemotherapy, childhood acute lymphoblastic leukemia patients suffered from psychological as well as physical side effects. The most frequent side effect reported by parents was behavior alteration (92%). Second and third in frequency were increased appetite and infections, reported by 88% and 83% of parents, respectively. The most severe side effects were leg weakness, increased appetite, and behavior alteration. The overall frequency of side effects was weakly correlated to noncompliance. Reducing the impact of side effects may increase compliance with the treatment.

Background: Non‐compliance with childhood acute lymphoblastic leukemia (ALL) protocol is an important determinant of poor treatment outcome. Non‐compliance with protocol may not only concern parents or patients, but may also concern health‐care providers (HCP). Our study examines the accuracy of leukemia risk classification and attitude of HCP toward protocol compliance in Indonesia.Procedure: A combined retrospective study of medical records (MR) and a cross‐sectional questionnaire study with HCP were conducted. Accurate ALL risk classification in MR was assessed. HCP' knowledge of risk classification and their attitude toward protocol compliance were examined.Results: A total of 164 MR patients with ALL were assessed and 97 HCP were interviewed. The protocol criteria for high‐risk (HR) were not complete in 82 MR (50%). Of 97 HCP, 95% did not mention all five protocol criteria for HR. Both in the MR as well as in the questionnaires lymphoblast count on day 8 of chemotherapy, as early response to treatment, was the most frequently missed item (missing in 35% of MR and 85% of questionnaires). Only 14% of respondents actually checked with parents whether they administered the prescribed medicines.Conclusions: Our study shows that HCP should improve their knowledge and assessment of childhood ALL risk classification, especially lymphoblast count on day 8 of chemotherapy. Proper risk classification and subsequent correct treatment may enable more children to be cured of leukemia. Pediatr Blood Cancer 2008;51:732–736.

Most studies on Health-related Quality of Life (HRQOL) in children with cancer were conducted in developed countries. The aims of this study were to assess the HRQOL in childhood acute lymphoblastic leukemia (ALL) patients in Indonesia and to assess the influence of demographic and medical characteristics on HRQOL. After cultural linguistic validation, a cross-sectional study of HRQOL was conducted with childhood ALL patients and their guardians in various phases of treatment using the Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Core Scale and the Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 Cancer Module. Ninety-eight guardians and 55 patients participated. The internal consistency of both scales ranged from 0.57 to 0.92. HRQOL of Indonesian patients was comparable with those in developed countries. There were moderate to good correlations between self-reports and proxy-reports, however guardians tended to report worse HRQOL than patients. Children of the 2–5 year-group significantly had more problems in procedural anxiety, treatment anxiety and communication subscales than in older groups (p < 0.05). In the non-intensive phase HRQOL was significantly better than in the intensive phase, both in patient self-reports and proxy-reports. Younger children had more problems in procedural anxiety, treatment anxiety and communication subscales. Therefore, special care during intervention procedures is needed to promote their normal development. Psychosocial support should be provided to children and their parents to facilitate their coping with disease and its treatment.