Non-communicable diseases among children in Ghana: health and social concerns of parent/caregivers.

BACKGROUND: Globally, there is a progressive rise in the burden of non-communicable diseases (NCDs). This paper examined the health and social concerns of parents/caregivers on in-patient care for children with NCDs in Ghana. METHODS: This was a cross-sectional study in three large health facilities in Ghana (the largest in the South, the largest in the North and the largest in the Eastern part of Ghana. Data was collected with a structured questionnaire among 225 caregivers (≥18 years) of 149 children with NCDs in health facilities in the three regions. Data was analyzed with simple descriptive statistics. RESULTS: Most caregivers 169(75.0%) were women, relatively young (median age 35years), mostly married and resided in urban areas. Sickle cell disease was the commonest NCD among the children. All 169(75.0%) caregivers believed children suffer NCDs because of sins of parents/ancestors, 29(12.9%) believed herbalists/spiritualists have insights into treating NCDs and 73(32.6%) have previously used herbs/traditional medicine for child's illness. NCD in children was a burden and caused financial difficulties for families. Most caregivers (>96.0%) indicated NCDs in children should be included in national health insurance benefits package and a comprehensive national NCD policy is needed. CONCLUSION: Absence of national NCD policy for children is a major challenge. The burden of care rests mainly on the parents/caregivers. A national strategic intervention on the importance of awareness generation on the causes, risk factors, prevention and treatment of NCDs for families and communities is essential. Government support through national health and social policy initiatives are essential.

[Analysis of a Family-centred Care Programme with Follow-up Home-visits in Neonatology - In Times of the Directive from G-BA]. / Konzeptanalyse einer stationären und ambulanten psychosozialen familienzentrierten Betreuung in der Neonatologie in Zeiten des G-BA-Beschlusses.

BACKGROUND: Marked progress in neonatology changed care of very preterm infants (VLBW) over the last decades - but also the attitude towards family-centred care (FCC). With the directive of the German Federal Joined Committee (G-BA), politicians recognize the necessity of neonatal FCC. AIM: To evaluate time and personnel costs necessary at a centre of established FCC. METHODS: Elternberatung "Frühstart" is a FCC programme for VLBW and seriously ill neonates from preganancy at risk to follow-up home-visits delivered by one interdisciplinary team. Analysis (2011-2014): 1.) Number of cases /participation in programme, 2.) resources of time, 3) and personnel, 4.) funding, 5) economic impact. RESULTS: 1.1.2011-31.12.2014: 441 cases (total cases: 2 212) participated in the programme. Participation of VLBW: mean 92% (86.4-97,2%). Costs of time are highest in neonates with congenital malformations: median 13.8 h, VLBW: median 11,2 h. Transition to home is most time intensive: median 7,3 (0-42.5) h. In average of 3.1 full-time nurses (part-time workers) are able to counsel 48 families/quarter. In severe cases funding is partly provided by health care insurances for social medical aftercare: positive applications: mean 92.7% (79.6-97.7%). CONCLUSION: Participation in the FCC programme in neonatology is high and costs of time are manageable.

Midwives' views on appropriate antenatal counselling for congenital anomaly tests: do they match clients' preferences?

OBJECTIVE: this study aims to provide insight into: (a) midwives' views on appropriate antenatal counselling for congenital anomaly tests, and (b) whether these views match clients' preferences regarding antenatal counselling. DESIGN: a comparative (midwives versus clients) questionnaire survey. Cognitive interviews (n=8) were used to validate the internal validity of the midwifery questionnaire results. PARTICIPANTS AND SETTING: 1416 Dutch midwives (response 62%) completed a questionnaire measuring their views on appropriate antenatal counselling for congenital anomaly tests. MEASUREMENTS: we used the 58-item midwives' version of the QUOTE (prenatal), an instrument to assess clients' counselling preferences. Descriptive statistics were used to explore midwives' views on appropriate counselling and how these relate to client preferences as measured previously with the clients' version of the QUOTE (prenatal). FINDINGS: almost all midwives consider the client-midwife relation (100%) and health education (95%) to be (very) important for appropriate antenatal counselling for congenital anomaly tests. Almost half of the midwives consider decision-making support (47%) to be (very) important. These findings are practically congruent with client preferences. Still, clinically relevant differences were found regarding 13 individual items, e.g. more clients than midwives value 'medical information about congenital anomalies' and 'getting advice whether to take prenatal tests or not'. KEY CONCLUSION: like clients, most midwives value a good client-midwife relation and health education as (very) important for antenatal counselling for congenital anomaly tests. Less than half of them value decision-making support. These findings are in contrast with the literature in which decision-making support is seen as the most important part of antenatal counselling for congenital anomaly tests. IMPLICATION FOR PRACTICE: preferably, antenatal counselling for congenital anomaly tests should be consistent with the three-function model of antenatal counselling i.e. maintaining a client-midwife relation, providing health education as well as decision-making support, and tailored to clients' individual preferences. As not all midwives subscribe to these functions, reflection on their views is important. Furthermore, midwives need to bridge their views on appropriate antenatal counselling and client preferences. To do so, midwives may benefit from the Shared Decision Making approach.

Making sense of the situation: women's reflection of positive fetal screening 11-21 months after giving birth.

OBJECTIVE: we aimed to gain insights into women's reflection on their experience of receiving a false-positive screening result for fetal anomalies, more than 11 months from birth. DESIGN AND SETTING: the women constituted a subgroup of participants in a larger cohort study (n=1111) where the purpose was to explore women's experience of maternity services, their health, well-being, attitudes and expectations during pregnancy and after birth. Semi-structured interviews were collected from 14 women 11-21 months after birth who had been screened positive for fetal chromosomal abnormality in early pregnancy. The method of life-world phenomenological approach was used in data collection and analyses. FINDING: four themes were identified: first reaction, framing of the news, I am not an island and pregnancy lost and regained. With few exceptions, their experience can be seen as a pathway from shock to balanced feeling where women have made sense of what happened and have dealt adequately with their situation. CONCLUSION: this study indicates that few women still experience anxiety and concerns in relation to positive fetal screening result more than 11 months from birth. They however remember vividly their first reaction and how the result was presented. As such, the findings have implications in the clinical context meaning that framing of the news on face-to-face level, extended information about the test results, help to sort out mixed feelings and support from a named midwife are of importance.

Pregnancy termination due to fetal anomaly: women's reactions, satisfaction and experiences of care.

OBJECTIVE: to explore what women who have had a pregnancy terminated due to a detected fetal malformation perceived as having been important in their encounters with caregivers for promoting their healthy adjustment and well-being. METHOD: an exploratory descriptive design was used. Semi-structured interviews were audiotaped, and the information pathway described. The text was processed through qualitative content analysis in six steps. SETTING: four fetal care referral centres in Stockholm, Sweden. PARTICIPANTS: 11 women opting for pregnancy termination due to fetal malformation. FINDINGS: in-depth understanding and compassion are important factors in providing the feeling of support people need so they are able to adapt to crisis. The women emphasised that the caregivers have to communicate a sense of responsibility, hope and respect and provide on-going care for them to feel assured of receiving good medical care and treatment. Aside from existing psychological conditions, the women identified as having emotional distress directly after termination and for at least the following three months. Most women experienced a range of negative emotions after pregnancy termination, including sadness, meaninglessness, loneliness, tiredness, grief, anger and frustration. Still some of this group had positive reactions because they experienced empathy and well-organised care. CONCLUSION AND IMPLICATIONS FOR PRACTICE: The most important factors associated with satisfaction regarding pregnancy termination due to a fetal malformation are the human aspects of care, namely state-dependent communication and in-depth understanding and compassion. The changes in care most often asked for were improvements in the level of standards and provision of adequate support through state-dependent communication, in-depth understanding and compassion, and complete follow-up routines and increased resources. Targeted education for the caregivers may be suited to ensuring that they properly meet needs of their patients.

Survey of second-trimester maternal serum screening in Japan.

AIM: Second-trimester maternal serum screening (MSS) is the predominant form of prenatal screening in Japan. We hypothesize that patient education and physician knowledge of Down syndrome (DS) screening are insufficient to provide adequate information regarding prenatal screening in Japan. MATERIAL AND METHODS: In-person or telephone interviews with medical personnel were conducted at 25 medical facilities utilizing Afp(4) (Esoterix Genetic Laboratories, LLC, a wholly-owned subsidiary of Laboratory Corporation of America Holdings) second trimester screening. We explored how medical facilities provided information about the MSS process to pregnant women. RESULTS: Before prenatal testing, 60% of medical facilities spent an average of less than 5 min per patient explaining the MSS process. The option of amniocentesis for chromosomal aneuploidy was explained at nearly all facilities, but only 60% explained the risk of amniocentesis. Ultrasound examination for open neural tube defects was explained only at half the facilities. Only five of 25 (20%) medical practitioners explained the possibility of having congenital disorders fetus. CONCLUSION: This study revealed that most obstetricians in Japan do not provide their patients with sufficient information about MSS.

La ruptura de Rosa. La aceptacton de la enfermedad congenita / Rosa´s rupture (the acceptance of congenital disease)

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