"I did not know it was so important to take it the whole time" - self-reported barriers to medical treatment among individuals with asthma.

BACKGROUND: Asthma is an extensive public health problem and inadequate disease control is not uncommon. Individuals' self-perceived barriers to medical treatment for the entire treatment chain (from seeking care for symptoms to using a medicine) have seldom been studied for chronic diseases such as asthma. The aim of this study was to explore self-perceived barriers to medical treatment among individuals with asthma within the framework of AAAQ (availability, accessibility, acceptability and quality). METHODS: Individuals with asthma visiting the asthma nurse at a primary health care centre, and who currently had a prescription for anti-asthmatic medicines, were informed about the study. The nurse asked the persons for their consent to be contacted by an interviewer. The interview guide was constructed from the elements of AAAQ exploring self-perceived barriers to asthma treatment. Interviews were conducted in Swedish, English, Arabic and Persian. They were transcribed verbatim and a manifest content analysis was conducted. RESULTS: Fourteen interviews were conducted. There was a large variation in both age and reported number of years with asthma. Self-perceived barriers to asthma treatment were experienced throughout the whole treatment chain. Barriers that emerged were health care accessibility, perceived quality of care, beliefs about medicines, life circumstances, knowledge gap about asthma and medicines, practical obstacles to using medicines, and experiences with treatment. The self-perceived barriers cover all four elements of AAAQ, but there are also some barriers that go beyond those elements (life circumstances and practical obstacles to using medicines). CONCLUSIONS: Self-perceived barriers among individuals with asthma cover the whole treatment chain. We want to highlight the inadequate information/education of patients leading to knowledge gaps about both disease and the effect of medicines, and also the perceived unsatisfactory treatment at the PHCC, which could partly be counteracted if patients know what to expect from health care visits.

Cancer disclosure-account from a pediatric oncology ward in Egypt.

OBJECTIVE: Informing the child about his/her diagnosis and treatment plan is essential; research has shown that it is related to the patient's quality of life and adherence to medication. METHODS: For 7 months during 2008 (February to September), 2 study-specific questionnaires were constructed and administered to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital Egypt. RESULTS: Among the 313 eligible parents of children diagnosed with cancer, 304 (97%) answered the first questionnaire and 281 (92%) answered the second questionnaire. We found that nearly three-quarters (72%) of the parents had their child's cancer diagnosis communicated by the physician. Among the 72%, the rate of the children present with the parent or parents during the disease disclosure conversation was 39% (n = 85/219). The majority of the children were in the age group 5-18 years (55%). CONCLUSIONS: Our findings indicate that cancer disclosure at the Children's Cancer Hospital is to a certain degree common; yet even when disclosure does take place, it is mainly in the absence of the child. Moreover, the information provided during the conversation may not be fully comprehended by the parent or the child because of the physician's misleading use of terms when disclosing the disease. Therefore, better practice should be developed for disease disclosure, and proper communication should be established between the patients and the provider; patient autonomy should also have an influence in the clinical practice.

Parental trust in health care--a prospective study from the Children's Cancer Hospital in Egypt.

OBJECTIVE: Patient-physician communication and patient satisfaction are important elements of cancer care. Trust is considered to be crucial for the patient-physician relationship, yet little is to be found in the literature regarding what factors may influence trust. METHODS: We assessed predictors of trust in health-care professionals and in the medical care by administering two questionnaires, one at start of chemotherapy treatment and one at the time of the third chemotherapy cycle, to 304 parents of children with newly diagnosed cancer at the Children's Cancer Hospital in Cairo, Egypt. RESULTS: Parents' trust in the medical care at the time of the child's third chemotherapy cycle was significantly associated with the following at the start of treatment: having received at least moderate information about the disease (relative risk (RR) 13.2; 95% CI 7.8-22.3) and the treatment (RR 17.2; 95% CI 9.5-31.4), having the opportunity to communicate with the child's physicians (RR 21.3; 95% CI 11.7-38.8), being satisfied with the physicians conversation style (RR 30.6; 95% CI 14.4-64.9), having the emotional needs met (RR 22.2; 95% CI 11.8-41.9), and being met with care by the child's physicians (RR 32.0; 95% CI 15.2-67.7). After multivariable model selection, the strongest predictor of trust at the time of the third chemotherapy cycle was to be met with care at the start of treatment. CONCLUSION: Parents being met with care by the child's physicians at the beginning of the child's chemotherapy treatment develop an increased trust in the medical care.

Having a Child Diagnosed with Cancer: Raising the Challenges Encountered by the Caregivers at the Pediatric Oncology Ward in Egypt.

Having a child diagnosed with a life-threatening illness, and undergoing a severe treatment regimen, is a massive challenge for many caregivers, not the least of who are those with low socioeconomic status and living in a society where deeply rooted cultural and societal misconceptions are immensely noticeable. The aim of the study is to raise the great concerns experienced by the caregivers at the pediatric oncology ward in Egypt. The study is comprised of 24 caregivers of children with cancer undergoing treatment at the inpatient ward. Semi-structured interviews and participant observations were used as a means of data collection. Numerous concerns are addressed in this study which are all related to fear of the illness and guilty feelings of having caused the child this illness. The fears and concerns addressed in this paper seem to obstruct the caregivers' overall psychosocial wellbeing, which is known to have multiple effects on the child's overall wellbeing. Thus, it is very important to take into consideration caregivers in the child's cancer treatment.

Adherence to medication: A nation-wide study from the Children's Cancer Hospital, Egypt.

AIM: To investigate adherence to medical regimen and predictors for non-adherence among children with cancer in Egypt. METHODS: We administered two study specific questionnaires to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital in Cairo, Egypt, one before the first chemotherapy treatment and the other before the third. The questionnaires were translated to colloquial Egyptian Arabic, and due, to the high illiteracy level in Egypt an interviewer read the questions in Arabic to each parent and registered the answers. Both questionnaires consisted of almost 90 questions each. In addition, a Case Report Form was filled in from the child's medical journal. The study period consisted of 7 mo (February until September 2008) and we had a participation rate of 97%. Descriptive statistics are presented and Fisher's exact test was used to check for possible differences between the adherent and non-adherent groups. A P-value below 0.05 was considered significant. Software used was SAS version 9.3 for Windows (SAS Institute Inc., Cary, NC, United States). RESULTS: Two hundred and eighty-one (90%) parents answered the second questionnaire, regarding their child's adherence behaviour. Approximately two thirds of the children admitted to their third chemotherapy treatment had received medical recommendations upon discharge from the first or second chemotherapy treatment (181/281, 64%). Sixty-eight percent (123/181) of the parents who were given medical recommendations reported that their child did not follow the recommendations. Two main predictors were found for non-adherence: child resistance (111/123, 90%) and inadequate information (100/123, 81%). In the adherent group, 20% of the parents (n = 12/58) reported trust in their child's doctor while 14 percent 8/58 reported trust in the other health-care professionals. Corresponding numbers for the non-adherent group are 8/123 (7%) for both their child's doctor and other health-care professionals. Almost all of the parents expressed a lack of optimism towards the treatment (116/121, 96%), yet they reported an intention to continue with the treatment for two main reasons, for the sake of their child's life (70%) (P = 0.005) and worry that their child would die if they discontinued the treatment (81%) (P < 0.0001). CONCLUSION: Non-adherence to medical regimen is common among children diagnosed with cancer in Egypt, the main reasons being child resistance and inadequate information.