Worldwide, insulin-dependent type 1 diabetes is one of the most frequently diagnosed long-term endocrine disorders found in children and the incidences of this diseased is still increasing. In Sweden the routines are, according to national guidelines, when the child is diagnosed with type 1 diabetes, the child and its family remains at the hospital for about two weeks. There is limited knowledge about how a diabetes team handles a child and its family from admission to discharge, therefore the purpose of this study was to seek a deeper understanding of how the diabetes team's parent/child education process works, from admission to discharge, among families with a child newly diagnosed with type 1 diabetes.
Qualitative data collection was used. Four focus-group interviews, with a sample of three diabetes teams from different paediatric hospitals in the south western part of Sweden, were conducted and the data recorded on tape and then analysed using qualitative content analysis.
The results indicate that achieving a status of self-care on the part of the patient is the goal of the diabetes education programme. Part of the programme is aimed at guiding the child and its parents towards self-help through the means of providing them with knowledge of the disease and its treatment to enable the whole family to understand the need for cooperation in the process. To do this requires an understanding, by the diabetes team, of the individualities of the family in order to gain an overall picture.
The results of this study show that the diabetes education programme is specifically designed for each family using the internationally recommended clinical practice guidelines with its specific aims and objectives. Achieving the families' willingness to assist in the self-care of the child care is the goal of the parent education process. To achieve this, the paediatric diabetes specialist nurse and the diabetes specialist paediatrician immediately and deliberately start the process of educating the family using a programme designed to give them the necessary knowledge and skills they will need to manage their child's type 1 diabetes at home.
To explore perceptions of psychosocial adaptations in parenting young children with type 1 diabetes (T1DM) from diagnosis through childhood.
Fourteen parents of eleven T1DM children diagnosed at ≤5 years participated in semi-structured interviews. Data were analyzed using content analysis.
Significant themes were: Diagnostic Experiences: Frustrations, fears and doubts: Parents described inadequate diagnostic experiences with pediatricians where concerns were minimized and sometimes delayed diagnosis. Although hospitalization occurred abruptly, communication with specialists was more satisfactory. Adapting to Diabetes: Parents described isolation in caring for their child’s T1DM. Family and friends had minimal understanding of T1DM care. Support groups lessened mothers’ isolation, but fathers were less positive about this experience. Parental adaptation was more effective when responsibility for diabetes decision-making was shared. All parents reported never mastering diabetes management. Negotiating Developmental Transitions: Normative childhood events were stressful requiring that parents balance concerns to foster child participation.
Pediatric providers can improve diagnostic and treatment experiences for parents of T1DM children by recognizing feelings of isolation and lack of mastery, providing attentive communication, encouraging parental teamwork, and offering ongoing anticipatory guidance.
parenting; type 1 diabetes; teamwork; qualitative
Aim: To investigate the health service experiences and needs of parents in the period around diagnosis of ophthalmic disorders in their children.
Methods: Parents of children newly diagnosed with visual impairment and/or ophthalmic disorders at a tertiary level hospital in London participated in a questionnaire survey, using standard instruments, followed by in-depth individual interviews, to elicit their views about the processes of care, their overall level of satisfaction, and their unmet needs.
Results: 67% (147) of eligible families (135 mothers, 76 fathers) participated. Overall satisfaction with care was high, being greater among parents of children with milder visual loss or isolated ophthalmic disorders than those with more severe visual loss or multiple impairments. Nevertheless, parents’ reported greatest need was the provision of general information, including about their child’s ophthalmic disorder and educational and social services and support. Mothers reported greater information needs than fathers, as did white parents compared to those from ethnic minorities. White parents also regarded the processes of care to be less comprehensive and coordinated, as well as less enabling, than did parents from ethnic minorities.
Conclusions: Although parents reported high overall satisfaction with services, improving the medium, content, and scope of general information provided by professionals to parents of visually impaired children emerges as a priority. Equitable planning and provision of health services for families of children with visual impairment needs to take into account that informational and other needs vary by whether the parent is the primary carer or not and their ethnicity, as well as by the severity and complexity of their child’s visual loss.
health services research; visual impairment; children; disability; families
There are good opportunities in Sweden for health promotion targeting expectant parents and parents of young children, as almost all are reached by antenatal and child health care. In 2005, a multisectoral child health promotion programme (the Salut Programme) was launched to further strengthen such efforts.
Between June and December 2010 twenty-four in-depth interviews were conducted separately with first-time mothers and fathers when their child had reached 18 months of age. The aim was to explore their experiences of health promotion and lifestyle change during pregnancy and early parenthood. Qualitative manifest and latent content analysis was applied.
Parents reported undertaking lifestyle changes to secure the health of the fetus during pregnancy, and in early parenthood to create a health-promoting environment for the child. Both women and men portrayed themselves as highly receptive to health messages regarding the effect of their lifestyle on fetal health, and they frequently mentioned risks related to tobacco and alcohol, as well as toxins and infectious agents in specific foods. However, health promotion strategies in pregnancy and early parenthood did not seem to influence parents to make lifestyle change primarily to promote their own health; a healthy lifestyle was simply perceived as 'common knowledge'. Although trust in health care was generally high, both women and men described some resistance to what they saw as preaching, or very directive counselling about healthy living and the lack of a holistic approach from health care providers. They also reported insufficient engagement with fathers in antenatal care and child health care.
Perceptions about risks to the offspring's health appear to be the primary driving force for lifestyle change during pregnancy and early parenthood. However, as parents' motivation to prioritise their own health per se seems to be low during this period, future health promoting programmes need to take this into account. A more gender equal provision of health promotion to parents might increase men's involvement in lifestyle change. Furthermore, parents' ranking of major lifestyle risks to the fetus may not sufficiently reflect those that constitute greatest public health concern, an area for further study.
Nurses have a crucial role in patient education of children with type 1 diabetes, but they often exhibit lack of knowledge of the patient education process. This study aimed to describe an educational program to enhance empowering patient education process for the blood glucose monitoring education of school-age children and nurses’ perceptions of using empowering techniques.
An empowering patient education process for the diabetes education of school-age children was developed. The researcher collected nurse’s perceptions of managing the educational program by semi-structured interviews. Ten nurses carried out the diabetes education, and 8 of them participated in the interview. Three nurses implemented the diabetes education twice and were interviewed twice. The data consisted of 11 descriptions of the blood glucose monitoring education. The interviewer analyzed the data deductively and inductively by content analysis.
Nurses described successful managing of the empowering patient education process. The need assessment consisted of using multiple methods and clarifying the capabilities and challenges of children and their parents. Planning manifested itself in adequate preparation and multiple objectives stated together with the family. Implementation comprised the relevant content, and the use of suitable teaching materials and methods. Evaluation was performed with various methods and documented accurately. Nurses also faced some challenges related to management and leadership, ambivalence with traditional and empowering patient education, and families’ overall situation.
An example of developing evidence-based patient education program is presented, but besides education other factors supporting changes in work practices should be considered in further development.
Patient education; Empowerment; Children; Diabetes
The purpose of this study was to compare a medical diagnosis of autism spectrum disorder (ASD) with the perceptions of immigrant parents regarding their child’s difficulties.
Semistructured interviews were conducted with parents. The children were assessed using the ADOS, and a multiaxial diagnosis was reached using the DSM-IV.
The majority of parents recognized symptoms in their child that were related to autism. Less often, however, parents believed their children had a developmental delay or communication problem rather than an ASD. There were also parents who failed to see any problem at all in their child although the child was, nonetheless, diagnosed as having an ASD.
The failure of immigrant mothers to acknowledge a diagnosis of ASD in their younger children may represent an attempt to preserve hope for their child’s future. Mothers of older children may not, however, agree with the psychiatric diagnosis. Community services need to balance the need to convey accurate medical information with the need to protect parents’ investment in their children. This may be particularly true for immigrant parents who are living outside their cultural framework.
autism; diagnosis; parents; immigrant; perceptions; qualitative; autisme; diagnostic; parents; immigrants; perception; qualitatif
The present study examined mean level similarities and differences as well as correlations between mothers’ and fathers’ attributions regarding successes and failures in caregiving situations and progressive versus authoritarian attitudes.
Interviews were conducted with both mothers and fathers in 77 Swedish families.
Fathers reported higher adult-controlled failure and child-controlled failure attributions than did mothers; these differences remained significant after controlling for parents’ age, education, and possible social desirability bias. Significant positive correlations were found for mothers’ and fathers’ progressive attitudes, authoritarian attitudes, and modernity of attitudes after controlling for parents’ age, education, and possible social desirability bias.
We conclude that in Sweden fathers are more likely to attribute failures in caregiving situations both to themselves and to children than are mothers and that there is moderate concordance between fathers and mothers within the same family in progressive and authoritarian parenting attitudes.
To measure the relationship between perceived child competence, parental self‐efficacy, and children's glycaemic control.
Cross‐sectional outpatient based questionnaire survey of 78 parents of children aged 6–12 years with insulin dependent diabetes mellitus, diagnosed for at least one year. Parental perceptions of their child's competence were assessed, together with parental perceptions of their own self‐efficacy in managing their child's diabetes. Glycaemic control was assessed by the average annual HbA1C level.
The response rate was 64.5% (51 parents); 82% were mothers and the socioeconomic class and ethnicity spread was representative of the general population. The mean age of the children was 10 years and duration of diabetes 4.4 years. Poorer glycaemic control was associated with higher perceived child competence, together with lower perceived age of responsibility, lower perceived seriousness, and less frequent blood tests. Higher parental self‐efficacy and higher perceived child competence predicted a higher level of normalisation, as did lower perceived seriousness, a lower perceived parental responsibility for management, and a less protective style of parenting.
Parents' perceptions of their children's diabetes are significantly related to glycaemic control; however, those who appear more competent at managing diabetes may overestimate their child's capabilities, leading to poorer glycaemic control.
chronic disease; diabetes mellitus; parents; self efficacy; type 1 diabetes
The investigation studies the perception and attitudes of patents towards their mentally retarded child. Thirty such children were followed up after one year of initial contact and the parents were interviewed. Parents of higher education had a more scientific perception. Most parents had unrealistic hopes and expectations, feelings of shame, guilt and self blame were predominant. Rejection, hostility neglect of child and other negative attitudes were significantly more often seen in younger parents, urbanites and those with higher education. The negative attitudes were more towards a child with additional psychiatric problems. This information could be of great advmuge in managing families with a retarded child.
During the last decade an increasing use of differentiated support measures for pupils with special educational needs, indicative of a discrepancy between educational policies and practices, has been witnessed in Sweden. Another trend has been the increased use of medical diagnoses in school. The aim of this study was to explore the main concern of support given to pupils with special educational needs and how pupils and parents experience and handle this. Interviews were conducted with eight pupils in Grades 7–9—and their parents—at two compulsory schools in a city in northern Sweden. A grounded theory approach was used for analyzing the interview data. A conceptual model was generated illuminating the main concern of special support measures for pupils and parents. The core category of the model, struggling for recognition and inclusion, was related to two categories, which further described how this process was experienced and handled by the participants. These categories were labeled negotiating expertise knowledge within a fragmented support structure and coping with stigma, ambivalence, and special support measures. The developed conceptual model provides a deeper understanding of an ongoing process of struggle for recognition and inclusion in school as described by the pupils and parents.
Grounded theory; pupils with special educational needs; parents; special needs education; medical diagnosis; personal experiences
To assess parents’ opinions about their participation in the longitudinal, multicenter study - The Environmental Determinants of Diabetes in the Young (TEDDY) consortium.
A survey was given to parents who had been in the study for ≥ 1 year. Parents rated the importance of different reasons for staying in TEDDY and how well different study components were working. Parents were also asked if they had suggestions for making TEDDY better and if they ever had thought of leaving TEDDY and if so, why.
Out of the 3336 eligible families, 2000 completed the survey (59.1%); most (77.6%) were mothers. Survey completion was more common in European than US TEDDY sites and was associated with greater maternal education, more accurate perceptions about their child’s risk of type 1 diabetes, longer participation in TEDDY and excellent attendance at TEDDY visits. “Having someone watching the child for development of T1DM” was most important reason given for staying in the study; other important reasons included “Helping science discover causes of diabetes” and “Getting child’s antibody results”. Most parents were very satisfied with the different components of TEDDY and had not thought of leaving the study. A minority (24%) of parents acknowledged some thoughts of leaving TEDDY and cited the blood draws, being too busy/not having enough time, the demanding protocol, and food diaries as their reasons for considering leaving.
The study highlights factors important for successful implementation of demanding, longitudinal protocols. Friendly, devoted, skilled and knowledgeable staff with continuity makes the family comfortable. Keeping parents involved and informed on study progress is essential as is making procedures as smooth and painless as possible. Although the study is international the survey results were convergent across countries suggesting that the results have relevance to other similar studies to retain study participants.
Natural history; Diabetes mellitus; Type 1 Diabetes; Clinical observational study; Participation
Objectives To examine how perceptions of parental responsibility for diabetes management are associated with age, pubertal status, adolescents’ self-efficacy, and parental perceptions of adolescents’ efficacy, and if parental responsibility is associated with better metabolic control as a function of adolescents’ self-efficacy and parental perceptions of adolescents’ efficacy. Methods Questionnaires assessing parental responsibility, pubertal status, adolescents’ self-efficacy, and parental perceptions of adolescents’ efficacy were given to 185 adolescents with type 1 diabetes, 185 mothers, and 145 fathers. Results Greater parental responsibility was negatively associated with age, perceptions of pubertal status, and efficacy for all reporters. Interactions between parental responsibility and parental perceptions of adolescents’ efficacy indicated that parental responsibility was associated with better metabolic control when adolescents were perceived to have lower efficacy. Conclusions Adolescents’ and parents’ perceptions of parental responsibility are related to multiple factors. Metabolic control is best when high parental responsibility is maintained among adolescents with lower efficacy.
adolescents; age; diabetes; efficacy; fathers; mothers; puberty
This study investigated parents' information needs and involvement in decision-making processes affecting the care of children diagnosed with cancer. Interviews and questionnaires were used to assess parental satisfaction in 50 mothers and 16 fathers responsible for 58 children in an English Paediatric Oncology Unit. Parents reported that doctors contributed almost twice as much to the decision-making process as they did, but parental satisfaction was positively correlated with the amount of information provided when giving informed consent. Satisfaction about their involvement in this process relied heavily upon the level of support received from others. Parents consenting to their child's involvement in non-randomised trials perceived themselves to be under greater pressure from others during the decision-making process while those whose children were further along the treatment trajectory were more uncertain about decisions previously made. Findings indicate that the accessibility, support, information and degree of control afforded to parents by healthcare professionals impacts upon their satisfaction with both the decision-making process and their confidence in the decisions thus made. Information and support tailored to parents' specific needs may therefore enhance satisfaction with clinical decision making and reassure parents about decisions made in the long-term interest of their child's health.
parental satisfaction; decision making; communication; paediatric oncology
For many individuals, the diagnosis of diabetes is accompanied by the need for significant lifestyle changes, many of which seem difficult or impossible to implement. When diabetes is diagnosed in a child, those lifestyle changes may involve radical alterations in family life and significantly impact the child’s normal growth and development as well as the family’s social and economic status. This article describes some of the behavioral challenges associated with childhood diabetes and the importance of identifying strong, developmentally appropriate family support. Specific emphases are given to the complexity of the treatment regimens, the physiologic and emotional challenges associated with normal growth and development, and the family’s role in ensuring successful diabetes management. Challenges inherent in both type 1 and type 2 diabetes mellitus are discussed as are factors important to ensuring adherence to the treatment plan.
behavioral self-regulation; childhood diabetes; cognitive development; familial support; growth and development; motivation; obesity
When a child is diagnosed with childhood cancer this creates severe stress in the parents. The aim of the study was to describe the sense of coherence and its change over time in a sample of parents of children diagnosed with cancer.
The Swedish version of SOC (29 items) was used to measure the parents’ (n = 29) sense of coherence. Data were collected at four time-points: Time-point 1 at the time of diagnosis; time-point 2 during the treatment; time-point 3 after the child had completed their treatment and time-point 4 when the child had been off treatment for some years or had died.
The results showed that SOC in the investigated population is not stable over time. The parents decreased in total SOC between time-points 1, 2 and 3. Mothers had significantly weaker total SOC score including the components Manageability and Meaningfulness at time-points 1 as well time-point 2 compared to the fathers. However, for the component Comprehensibility no significant differences were shown between mothers and fathers. This study indicates that mothers’ and fathers’ SOC scores change over time during the child’s cancer trajectory. However, the pattern in these changes varies between mothers and fathers.
This study indicates that mothers and fathers may have different support needs during their child’s cancer trajectory.
While previous research has established a link between socioeconomic status (SES) and cancer outcomes, there is still little understanding of the processes that contribute to these outcome disparities.
This study aims to describe the ways a family's socioeconomic status (SES) influences their health care behavior after a child is diagnosed with cancer.
The sample included five case study families and in-depth interviews with 21 parents. Case study families were interviewed and observed once a month for six months.
Parents' finances influenced their ability to maintain household expenses, and to pay for health care expenses and household help. Wealth and help from friends and family are important aspects of families' financial statuses. Parents' educational attainment affected their ability to understand diagnosis and treatment options, their confidence and communication with health care professionals, and the utility of their social networks. Parents' occupation influenced their work schedule flexibility, fringe benefits, and their access to and quality of employer-sponsored health insurance.
Findings suggest that three overarching domains of SES (e.g. financial, education and occupation) have important implications for parents' health care navigation. This study underscores the need to use a nuanced set of SES measures (beyond income and education) in future research to enhance our understanding of how SES affects health care navigation, and refine intervention initiatives designed to help reduce health disparities.
Implications for Practice:
Cancer education initiatives should focus on enhancing patient-provider interactions, health communication, accessing health information, and resolving work and financial barriers to cancer care.
To examine young people's and parents' accounts of communication about cancer in childhood.
Semistructured interviews analysed using the constant comparative method.
Paediatric oncology unit.
13 families, comprising 19 parents (13 mothers, six fathers) and 13 patients aged 8-17 years, recruited from one paediatric oncology unit. The patients had cancer or brain tumour.
Most parents described acting in an executive-like capacity, managing what and how their children were told about their illness, particularly at the time of diagnosis. Their accounts were shaped by concerns to manage their identity as strong and optimistic parents and to protect their child's wellbeing. The patients identified elements of their parents' role that both facilitated and constrained their communication, and while they welcomed their parents' involvement, some expressed unease with the constraining aspects of their parents' role. Some young people described feeling marginalised in consultations and pointed to difficulties they experienced in encounters with some doctors.
There are difficulties in managing communication with young people who have a chronic, life threatening illness. Health professionals need to be aware of how the social positioning of young people (relative to adults) and the executive role of parents can contribute to the marginalisation of young people and hamper the development of successful relationships between themselves and young patients.
What is already known on this topicThe BMA has supported the principle of open communication with young patientsYoung people are sometimes excluded from participating in consultations and parents are reluctant to communicate openly with their seriously ill childrenWhat this study addsParents take on an executive-like role, managing what and how their children are told about their illnessesThis role both facilitates and constrains communication with young peopleSome young people feel marginalised in consultations—they described unease with this and problems in their relationships with some doctors
Well-functioning collaboration between professionals in the welfare sector has a strong influence on the contacts with parents of children and adolescents suffering from mental illness, and it is a precondition for the availability of support for these parents. This paper describes how such parents perceive collaboration between professionals in mental health care, social services, and schools.
This was a small-scale qualitative study. Data were collected by in-depth interviews with seven parents of children and adolescents diagnosed with anxiety and depression. The families were selected from the Child and Adolescent Mental Health patient records kept by the Stockholm County Council (Sweden), and they all lived in a catchment area for Child and Adolescent Mental Health outpatient services in Stockholm.
Results and discussion
Our results suggest that when the encounter between parents and professionals is characterised by structure and trust, it is supportive and serves as a holding environment. Parents think that communication links and coordination between professionals from different organisations are needed in the collaboration, along with appropriately scheduled and well-performed joint meetings to create structure in the parent-professional encounter. Parents also think that establishment of trust in this interaction is promoted by individual professionals who are available, provide the parents with adequate information, are skilled, and show empathy and commitment.
patients' perceptions; collaboration; child and adolescent mental health; child welfare; holding environment
Parents of sick children frequently visit their general practitioners (GPs). The aim was to explore parents' interpretation of their child's incipient signs and symptoms when falling ill and their subsequent unsatisfactory experience with the GP in order to make suggestions for improvements in the medical encounter.
Setting and subjects
Twenty strategically selected families with a child from a birth cohort in Frederiksborg County, Denmark were interviewed.
Parents wanted to consult their GP at the right time, i.e. neither too early nor too late. Well-educated parents experienced a discrepancy between their knowledge about their child, the information they had sought about the illness and the consultation with the GP, when they were dismissed with phrases such as “it will disappear” or “it is just a virus”. The parents went along with the GP's advice if the child only occasionally became sick. However, parents of children with recurrent illnesses seemed very frustrated. During the course of several consultations with their GP, they started to question the GP's competence as the child did not regain health.
Parents want to be acknowledged as competent collaborators. The GP's failure to acknowledge the parents' knowledge of their child's current illness, and the parents' attempt to identify what is wrong with the child and make the child feel better before the encounter may have consequences for the GP's credibility. It is therefore recommended that parents of children with recurrent illnesses receive extra attention and information.
Cooperation; family practice; general practice; medical encounter; parents' management; sick children
Objective To examine the relation of parent stress to parent mental health and child mental and physical health. Methods We interviewed children with type 1 diabetes (n = 132; mean age 12 years) annually for 5 years and had one parent complete a questionnaire at each assessment. Parents completed measures of general life stress, stress related to caring for a child with diabetes, benefit finding, and mental health. Child outcomes were depressive symptoms, self-care behavior, and glycemic control. Multilevel modeling was used to examine concurrent and longitudinal relations. Results Greater parent general stress and greater parent diabetes-specific stress were associated with poorer parent mental health. Overall, greater parent general stress was associated with poorer child outcomes, whereas greater parent diabetes-specific stress was associated with better child outcomes. Conclusions Families with high levels of general life stress should be identified as they are at risk for both poor parent and child health outcomes.
parenting; stress; type 1 diabetes
Parents' reported ambivalence toward large-scale vaccination programs for childhood diseases may be related to their perception of the risks of side-effects or safety of vaccination and the risk of contracting the disease. The aim of this study is to evaluate parents' perceptions of their child's risk contracting a Meningococcal C infection and parents' perceived control in preventing infection in relation to their evaluation of the safety, effectiveness and usefulness of vaccination.
In a large-scale interview study, a random sample of parents was interviewed after their children had received vaccination against Meningococcal C in a catch-up campaign. Questions were asked about the perceived relative vulnerability of their child contracting an infection, perceived control in preventing an infection, and parents' evaluation of the safety, usefulness and effectiveness of vaccination.
61% of 2910 (N = 1763) parents who were approached participated. A higher perceived relative vulnerability of their own child contracting the disease was related to a more positive evaluation of the vaccination campaign, while a lower perceived vulnerability did not result in a more negative evaluation. A higher perceived control in being able to prevent an infection was, however, related to a more critical attitude toward the safety, usefulness and effectiveness of vaccination.
Perceived relative vulnerability contracting an infection and parents' perceived control in preventing an infection seem to influence parents' evaluation of the vaccination programme. Future studies should determine if, and under which circumstances, these perceptions also affect parents' vaccination behaviour and would be relevant to be taken into account when educating parents about vaccination.
Although Attention Deficit Hyperactivity Disorder (ADHD) is recognised to be a familial and heritable disorder, little is known about the broader family characteristics of having a parent with ADHD problems. The main aim of this study was to investigate the relationship between parent ADHD problems, child clinical presentation and family functioning in a sample of children with ADHD. The sample consisted of 570 children with ADHD. Child psychopathology was assessed using a semi-structured diagnostic interview. Questionnaires were used to assess ADHD in the parents (childhood and current symptoms), family environment and mother/father-child relationship. Parental ADHD problems were associated with a range of adverse clinical outcomes in children with no difference in effects for mothers with ADHD problems compared to fathers with ADHD problems. Levels of maternal hostility were higher in families where mothers had ADHD problems, but reduced where fathers had ADHD problems. Parental ADHD problems index higher risk for more severe clinical presentation of ADHD in children and higher levels of family conflict (where there are maternal but not paternal ADHD problems). This study highlights that children with more severe behavioural symptoms are more likely to have a parent with persistent ADHD which has important implications when considering treatment and intervention strategies.
Electronic supplementary material
The online version of this article (doi:10.1007/s00787-013-0378-x) contains supplementary material, which is available to authorized users.
ADHD; Parental ADHD; Family environment
To explore the pathway to diagnosis of type 1 diabetes (T1D) in children from the perspective of the child, family and general practitioner (GP).
Qualitative interview study.
Parents of children aged 1 month to 16 years diagnosed with new onset T1D within the previous 3 months, children over 6 years diagnosed with new onset T1D within the previous 3 months and GPs who saw those children prior to diagnosis.
Children and parents were identified and recruited from two hospitals within the East of England.
The parents of 16 children (2–16 years) were interviewed. The total interval from onset of symptoms to diagnosis ranged from 6 to 127 days. The appraisal interval was the longest for almost all children and the diagnostic interval the shortest. Even with some knowledge of T1D, it took many parents several weeks of a complex cyclical and iterative decision-making process and often a physical trigger, such as weight loss, to decide to consult a healthcare professional. By that stage, many had already made or suspected the diagnosis of T1D themselves. Five GPs were interviewed. They felt that the main challenges to diagnosing T1D in children were the rarity of the condition coupled with how well most of the children appeared, and the difficulty in obtaining urine or blood samples from children.
This study highlights the difficulties for parents and GPs in recognising the early symptoms of T1D. It suggests that future interventions should be targeted at parents in the appraisal interval and include the importance of timely presentation to a healthcare professional and the differences between types 1 and 2 diabetes. Primary care physicians should also take parental concerns seriously and do urine dipstick tests during the consultation for children with symptoms of T1D.
The DAWN (Diabetes Attitudes, Wishes and Needs) study is a survey promoted by the International Diabetes Federation to recognize the perceptions and attitudes of people suffering from diabetes mellitus. In this context, we evaluated the quality of life of Italian and immigrant women with gestational diabetes mellitus (GDM). Information was gathered using a structured questionnaire for patients' self-compilation. In a 3-month period, a 51-item questionnaire was submitted to 198 Italians and 88 immigrants (from 27 different foreign nationalities). Italian women were older and had higher education than the immigrants. 60% of the Italians and 38% of the immigrants had a family history of diabetes mellitus. In both groups, the diagnosis of GDM caused anxiety; one-third of women feared their child could contract diabetes at delivery and/or have congenital malformations. Some women had trouble in following treatment regimens: the major concern being dietary advice and blood glucose testing. Most women were satisfied (34%) or highly satisfied (60%) with the quality of care, although the degree of cooperation between diabetes specialists and gynaecologists was considered sometimes unsatisfactory. In order to optimize maternal and foetal outcomes, educational projects and improved communication between patients and the healthcare provider team are recommended.
This paper reports the findings of a South Australian qualitative, exploratory study of children and young people living with a chronic disease, and their perceptions and experiences of physical activity. The perceptions and experiences of their parents were also explored. The chronic diseases were type 1 diabetes, asthma and cystic fibrosis.
Multiple qualitative data collection techniques were used to elicit the children and young people's perspectives and experiences of physical activity, including focus groups, maps, photos and 'traffic light posters'. The children's parents were interviewed separately to ascertain their views of their child's participation in physical activities.
Children and young people described their active participation in a wide variety of physical activities including organised sports and play, but made very little mention of any negative influence or impact due to their disease. Their parents' stories described the diligent background planning and management undertaken to enable their child to participate in a wide range of physical activities.
The results of this study suggest that for these children and young people, having a chronic disease was not perceived as a barrier to participation in organised sport and recreational activities. They were physically active and perceived themselves to be no different from their peers. Their positive beliefs were shared by their parents and the level of participation described was enabled by the high level of parental support and background planning involved in managing their child's health care needs.