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Diabetes in children and adolescents from non-western immigrant families: health education, support and collaboration
Nordic Council of Ministers, Nordic School of Public Health NHV.
2008 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aims: The general aims of this thesis were 1) To explore how non-western immigrant families’ different background and factors related to immigration and acculturation may affect the outcome of education and support in paediatric diabetes management; 2) To provide knowledge on how diabetes education and support for immigrant children and their families should be given to ensure them adequate competence in disease management and the children optimum metabolic control. Methods: The thesis comprises five studies carried out 2001-2006. Study I was based on national register data on metabolic control (N=977), questionnaires to all 20 Danish paediatric diabetes centres and structured interviews with 38 immigrant families. Study II was an intervention study including the development of guidelines and adapted educational material, followed by a re-education programme for 37 families. Study III was a case study of 11 Turkish and Kurdish children/families comprising data from medical records, a participant observation and qualitative interviews with the parents, one interpreter and three diabetes team members. Study IV included qualitative interviews with Arabic parents of 12 children, living as immigrants in Denmark and in Cairo/Egypt respectively. Study V comprised data on metabolic control and qualitative interviews with 11 young adult immigrants with type 1 diabetes since childhood or adolescence.Findings: The young immigrants were very unevenly distributed between the Danish paediatric centres. Most teams had little knowledge of and no special educational offers for immigrant families, just as the use of professional interpreters was limited. The immigrant parents had clearly different pre-conditions for diabetes education as compared with ethnic Danish parents, just as most had a low level of acculturation as evaluated by their need for an interpreter. Major differences were identified between the different ethnic groups and between the individual immigrants. The immigrant children and adolescents had different pre-conditions as compared to their parents; most, however, had non-optimum metabolic control. The design of an adapted educational programme could optimise the outcome of diabetes education, but was not sufficient to provide the families with competence in diabetes management and the children/ adolescents with good metabolic control of long duration. Many parents in particular experienced difficulty combining diabetes management with their principles relating to good parenthood. In addition, they appeared to be insecure and doubtful about the competence of the Danish health care professionals.Conclusions: A different ethno-cultural background is likely to create barriers to health education, learning and collaboration. The non-homogeneity of non-western immigrant families requires educational initiatives tailored to the pre-conditions and needs of the individual family members; adapted initiatives such as peer education are suggested. Special support for immigrant children and adolescents should be considered. A close, supportive and trust-filled relationship between the families and health care professionals is needed to facilitate learning, collaboration and good metabolic contro

Place, publisher, year, edition, pages
Göteborg: Nordic School of Public Health NHV Göteborg, Sweden , 2008. , 63 p.
Series
NHV Reports and Doctor of Public Health-Theses, ISSN 0283-1961 ; NHV Report 2008:1
Keyword [en]
Non-western Immigrants; Children; Adolescents; Parents; Type 1 Diabetes; Health Education; Support; Collaboration; Adaptation; Public Health; Health Promotion
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:norden:org:diva-3469ISBN: 978-91-85721-24-5 (print)OAI: oai:DiVA.org:norden-3469DiVA: diva2:757295
Public defence
2008-01-22, 13:00 (Danish)
Opponent
Supervisors
Available from: 2014-10-21 Created: 2014-10-21 Last updated: 2014-10-21Bibliographically approved
List of papers
1. Support and education of immigrants with chronically ill children: Identified needs from a case study of Turkish and Kurdish families
Open this publication in new window or tab >>Support and education of immigrants with chronically ill children: Identified needs from a case study of Turkish and Kurdish families
2008 (English)In: Health Education Journal, ISSN 0017-8969, E-ISSN 1748-8176, Vol. 67, no 1, 35-44 p.Article in journal (Refereed) Published
Abstract [en]

Objective The aim of the study was to analyse how parents of Turkish and Turkish/Kurdish children with diabetes and health care professionals perceived the education and support provided, and to assess what was required to improve the collaboration between the families and the team in order to optimize selfcare and metabolic control.

Design A case study including semi-structured interviews, participant observation and information from medical records.

Setting The study was carried out in Copenhagen, Denmark.

Method The study included 11 children aged 4—17 years of Turkish and Kurdish origin, their parents, the Turkish interpreter and the paediatric diabetes team.

Results The study identified the following factors that might contribute to improve the outcome: 1) Adjusted educational initiatives to promote a better understanding of concepts like chronic disease and selfcare, and to ensure that the content of the education is understood, implemented and maintained; 2) special support to enable parents to deal with practical and emotional problems and conflicts related to diabetes management; 3) closer contact and psychosocial support in order to promote learning and motivation for selfcare as well as promoting attendance at the clinics.

Conclusion Non-western immigrants have a considerable need for special support to help them learn to manage a chronic disease. Health education should aim at bridging the gap between differences related to culture and traditions

Keyword
Case Study, Chronically Ill Children, Education, Immigrants, Support
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3450 (URN)
Available from: 2014-10-15 Created: 2014-10-15 Last updated: 2014-10-21Bibliographically approved
2. Diabetes in children and adolescents from ethnic minorities: barriers to education, treatment and good metabolic control.
Open this publication in new window or tab >>Diabetes in children and adolescents from ethnic minorities: barriers to education, treatment and good metabolic control.
2005 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 50, no 6, 576-82 p.Article in journal (Refereed) Published
Abstract [en]

AIM: This paper reports an investigation to establish whether metabolic control is different in children and adolescents from ethnic minorities with type 1 diabetes compared with young Danish patients, and to learn about factors affecting their opportunities to achieve good metabolic control.

BACKGROUND: The prevalence of diabetes in children and adolescents from ethnic minorities in Denmark is increasing. Having a different ethnic background has frequently been described as a risk factor for poor metabolic control, but whether the risk is represented by the ethnicity and immigration itself or in combination with other factors is unclear.

METHODS: The study included data (gender, age, diabetes duration HbA(1c), number of incidents of severe hypoglycaemia and ketoacidosis) from a national register including 919 Danish and 58 children and adolescents from ethnic minorities, questionnaires to all 20 Danish paediatric diabetes centres and questionnaires to 38 families of other ethnic backgrounds completed by professional interpreters. The study was conducted in 2001-2002.

RESULTS: HbA(1c) was significantly higher in children and adolescents from ethnic minorities (mean 9.05 +/- 1.4%) compared with Danish patients (mean 8.62 +/- 1.3%; P = 0.018). There was no significant difference in HbA(1c) among the different ethnic groups, nor in the prevalence of severe hypoglycaemia or ketoacidosis. Patients from different ethnic minorities were unevenly distributed throughout the country, and generally the centres provided limited specialized knowledge and support. The questionnaires completed by the parents revealed limited schooling, lack of professional education and a major need for interpreters; these characteristics were especially prevalent among the mothers.

CONCLUSIONS: Young patients from ethnic minorities have significantly poorer metabolic control compared with Danish patients, and patients with an immigrant background are seen as a vulnerable group with different needs and probably fewer chances of achieving good control. Special education for health care professionals as well as projects to improve methods, quality and knowledge should be encouraged in order to provide tailored support to members of individual ethnic groups. We recommend that the use of professional interpreters should become the gold standard in health care provision to all immigrant families.

Keyword
Barriers to Education, Children, Ethnic Minorities, Immigrants, Nursing, Type 1 Diabetes
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3452 (URN)10.1111/j.1365-2648.2005.03443.x (DOI)15926962 (PubMedID)
Available from: 2014-10-15 Created: 2014-10-15 Last updated: 2014-10-21Bibliographically approved
3. Educating families from ethnic minorities in type 1 diabetes-experiences from a Danish intervention study.
Open this publication in new window or tab >>Educating families from ethnic minorities in type 1 diabetes-experiences from a Danish intervention study.
2005 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 59, no 2, 164-70 p.Article in journal (Refereed) Published
Abstract [en]

Ethnic minorities may constitute vulnerable groups within Western health care systems as their ability to master severe chronic diseases could be affected by barriers such as different culture and health/illness beliefs, communication problems and limited educational background. An intervention focusing on immigrant families with children with type 1 diabetes is described. The intervention included the development of adapted educational material and guidelines, and a subsequent re-education of children, adolescents and parents from 37 families. The study demonstrated that it was possible to improve health outcome. During the study, the knowledge of diabetes increased, but with considerable differences between the families. HbA(1c) also decreased significantly during the intervention, but increased during follow-up. The paper discusses possible explanations and suggestions for optimising education and calls for new projects where ethnic minorities are active participants in the development of appropriate educational programs and material.

Keyword
Education; Ethnic minorities; Immigrants; Chronic disease; Type 1 diabetes
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3453 (URN)10.1016/j.pec.2004.10.014 (DOI)16257621 (PubMedID)
Available from: 2014-10-15 Created: 2014-10-15 Last updated: 2014-10-21Bibliographically approved
4. Learning to live with type 1 diabetes from the perspective of young non-western immigrants in Denmark
Open this publication in new window or tab >>Learning to live with type 1 diabetes from the perspective of young non-western immigrants in Denmark
2008 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 17, no 11, 300-309 p.Article in journal (Refereed) Published
Abstract [en]

Aims and objectives.  To explore how young adults with a non-western immigrant background and type 1 diabetes since childhood/adolescence have perceived learning to live with the disease, with special focus on health education and support.

Background.  A national Danish study found significantly poorer metabolic control in non-western immigrant children and adolescents as compared with ethnic Danes. Subsequent studies have primarily focused on immigrant parents, whereas little is known about how immigrant children/adolescents have perceived the diagnosis and the diabetes care and support provided.

Design.  A mixed quantitative and qualitative design was applied. This included data on metabolic control for 2002–2006 and semi-structured interviews in 2006 with eleven strategically selected young immigrants. Data were analysed using qualitative content analysis.

Findings.  The findings are described in three thematic categories: Perceptions and reactions at the time of diagnosis; Learning to manage the disease; Present and future life with diabetes. Some findings were similar to those in studies describing children and adolescents of western origin, but the participants also shared perceptions which appeared to be related to their immigrant background. Above all, they described their parents as having difficulty coping with the disease and providing them with sufficient support.

Conclusions.  The diagnosis of diabetes in immigrant children and adolescents requires special pedagogic and psychosocial approaches to bridge the gaps related to culture and traditions and introduce the concept of diabetes management, not least to the parents, in a more optimum way.

Relevance to clinical practice.  Diabetes care should be a continuous and holistic process, constantly aiming to explore existing knowledge and the need for additional education and support for both the patient and his/her family. Special attention should be paid to the fact that immigrants may have limited pre-knowledge of chronic diseases in childhood, including the concept of selfcare.

Keyword
Adaptation, Diabetes care, Health Education, Support, Type 1 Diabetes, Young Non-Western Immigrants
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3451 (URN)
Available from: 2014-10-15 Created: 2014-10-15 Last updated: 2014-10-21Bibliographically approved
5. Learning to live with a child with diabetes - problems related to immigration and cross-cultural diabetes care.
Open this publication in new window or tab >>Learning to live with a child with diabetes - problems related to immigration and cross-cultural diabetes care.
2009 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 23, no 3, 482-9 p.Article in journal (Refereed) Published
Abstract [en]

Diabetes in childhood is a serious chronic disease. Having a different ethnic background is described as a risk factor for poor metabolic control and quality of life. The aim of the study was to explore variations in how parents living as immigrants in Denmark and in their native country had perceived learning to live with a child with diabetes. This was done in order to identify potential problems related to immigration and cross-cultural care which should be considered in the provision of diabetes care to immigrant families. Data were collected by semi-structured interviews with Arabic-speaking immigrant parents of six children with diabetes in Denmark and matched Egyptian parents of six children in Cairo. The children were 7-16 years old and had been diagnosed in 2003-2005. Data were analysed using a phenomenographic approach, focussing on describing variations in the parents' perceptions of the phenomenon 'Learning to live with a child with diabetes'. The findings show that the parents in the two countries shared many reactions and concerns, but that they responded and were affected in different ways. Above all, the immigrant parents experienced their parental role and the life of the child with diabetes, in a more doubtful and negative way. The findings further indicate that the establishment of a trustful relationship between the immigrant families and the health-care professionals should be given high priority. The study concludes that parents with an immigrant background are likely to require special pedagogic, psychological and social support to learn to adapt and come to terms with the diagnosis of a chronic disease in a child.

Keyword
Immigrant Parents; Children with Type 1 Diabetes; Cross-Cultural Diabetes Care; Health Education and Support; Trust; Health Promotion; Phenomenography; Egypt
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3454 (URN)10.1111/j.1471-6712.2008.00644.x (DOI)22747778 (PubMedID)
Available from: 2014-10-15 Created: 2014-10-15 Last updated: 2014-10-21Bibliographically approved

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