"I Like People to Treat Me Normally": Barriers to Type 1 Diabetes Self-Management Among Adolescents.

Adolescents with type 1 diabetes face barriers that can have a negative influence on self-management behaviors. This study was an analysis of semi-structured interviews with adolescents, parents, and health care providers to better understand these barriers among adolescents in Jordan. Adolescents with type 1 diabetes reported individual-level barriers including feeling labeled, pitied, and stigmatized for having type 1 diabetes. They also discussed the system-level barrier of an education system that does not adapt to meet their needs. Individual- and system-level barriers are interrelated and could influence adolescents' decisions regarding whether to disclose their condition to others.

Does Sleep Position Influence Sleep-Disordered Breathing in Infants With Cleft Palate: A Feasibility Study?

OBJECTIVE: Cleft palate (CP) can affect breathing, leading to sleep-disordered breathing (SDB). Sleep position can affect SDB, but the optimum sleep position for infants with CP is unknown. We aimed to determine the design of a pragmatic study to investigate the effect of the 2 routinely advised sleep positions in infants with CP on oxygen saturations. DESIGN: A multicentered observational cohort. SETTING: Four UK-based cleft centers, 2 advising supine- and 2 side-lying sleep positions for infants with CP. PARTICIPANTS: Infants with isolated CP born July 1, 2015, and December 31, 2016. Of 48 eligible infants, 30 consented (17 side-lying; 13 supine). INTERVENTIONS: Oxygen saturation (SpO2) and end-tidal carbon dioxide (ETCO2) home monitoring at age 1 and 3 months. Qualitative interviews of parents. OUTCOME MEASURES: Willingness to participate, recruitment, retention, and acceptability/success (>90 minutes recording) of SpO2 and ETCO2 monitoring. RESULTS: SpO2 recordings were obtained during 50 sleep sessions on 24 babies (13 side-lying) at 1 month (34 sessions >90 minutes) and 50 sessions on 19 babies (10 side-lying) at 3 months (27 sessions >90 minutes). The ETCO2 monitoring was only achieved in 12 sessions at 1 month and 6 at 3 months; only 1 was >90 minutes long. The ETCO2 monitoring was reported by the majority as unacceptable. Parents consistently reported the topic of sleep position in CP to be of importance. CONCLUSIONS: This study has demonstrated that it is feasible to perform domiciliary oxygen saturation studies in a research setting and has suggested that there may be a difference in the effects of sleep position that requires further investigation. We propose a study with randomization is indicated, comparing side-lying with supine-lying sleep position, representing an important step toward better understanding of SDB in infants with CP.

Factors impacting on childhood nutrition: The experience of mothers in a rural Ghanaian community.

Despite globally recommended infant and young child feeding (IYCF) practices, inadequate Child feeding remains a global challenge and the root cause of undernutrition. Most mothers who primarily feed children in most developing settings appear to have received information on the IYCF practices. We explored mothers' limitations to provide children optimally in a rural Ghanaian community. We interviewed 42 family members, including parents and grandparents of thirty-two children under five years, from fifteen households using an ethnographic fieldwork approach. We observed and participated in food preparation and child feeding and interviewed religious leader, diviners. Households' decision-making arrangements, mothers, emerging roles and inconsistency of fathers' roles, competing sources of knowledge poverty, food insecurity and the nature of the community's social interactions and policing of women's child feeding practices are issues mothers have to navigate to feed children in the study community. Cultural custodians should be given child nutrition and providing information. Mothers should be empowered to manage child feeding and emerging roles.

Child feeding in rural northern Ghana: Carer's perceptions of food and their children's diets.

A child's diet should be composed of appropriate nutrients to achieve optimal nutritional status, and though there is a substantial evidence base for child feeding recommendations, developing countries continue to face challenges regarding optimal child feeding. This paper describes an ethnographic study undertaken in rural northern Ghana to explore community perceptions of what 'counts' as food for children and the impact this had on the nutrients they received. Fifteen households with children under 5 years were purposively selected. In-depth interviews were held with 25 mothers, 7 fathers and 8 grandparents within these households as well as 2 diviners. Participant observations were also undertaken. Findings show that satiety rather than nutrition was the key consideration in adult choices about a child's diet. The community regarded carbohydrate-based meals as food, but considered protein, vitamins and mineral-based foods as nonessential elements of a child's diet, and important sources of these nutrients were regarded as treats.

Proof of concept trial for a new theory-based intervention to promote child and adult behavior change.

Interventions to change children's behavior typically target adults or children, but rarely both. The aims were to: (a) evaluate acceptability and feasibility of an innovative theory-based intervention designed to change both child and adult behavior, and (b) generate effect sizes for a definitive randomized controlled trial. The oral health of sixty children aged 5-9 years with a repaired cleft lip and/or palate was assessed before randomization to one of three conditions: (a) control group, (b) intervention group in which children and adults were asked to form implementation intentions, or (c) intervention plus booster group in which adults were additionally sent a reminder about the implementation intentions they and their children formed. Oral health assessments were repeated at 6-month follow-up alongside exit interviews. The procedures proved popular and participants exposed to the intervention additionally reported believing that forming implementation intentions was effective. Descriptive statistics generally showed oral health improvements across all conditions, although the effects were more marked in the intervention plus booster condition, where plaque improved by 44.53%, gingivitis improved by 20.00% and free sugar consumption improved by 8.92% (vs. 6.43% improvement, 15.00% deterioration and 15.58% improvement in the control group, respectively). Data collection procedures were acceptable and the intervention feasible. The effect sizes suggest that the intervention plus booster condition has sufficient promise to proceed to a fully-powered randomized controlled trial. The intervention has the potential to be adapted to tackle other child health behaviors and to be deployed at scale.

Parental Experience of Sleep-Disordered Breathing in Infants With Cleft Palate: Comparing Parental and Clinical Priorities.

OBJECTIVE: To identify outcomes relating to sleep-disordered breathing (SDB) that are relevant to parents, during the early weeks of caring for infants with cleft palate (CP), and compare these with clinical outcomes identified in a systematic search of research literature. DESIGN: A qualitative study using telephone/face-to-face interviews with parents explored their understanding of breathing and respiratory effort in infants with CP. SETTING: Care provided by 3 specialist cleft centers in the United Kingdom, with study conducted in parents' homes. PARTICIPANTS: Criteria for participation were parents of infants with isolated CP aged 12 to 16 weeks. Thirty-one parents of infants with CP (over 12 weeks) were invited to participate in the interview. Interviews were completed with 27 parents; 4 parents could not be contacted after completing the sleep monitoring. RESULTS: Parents' description of infants' sleep suggests that breathing is not considered as a separate priority from their principal concerns of feeding and sleeping. They observe indicators of infants' breathing, but these are not perceived as signs of SDB. Parents' decision to use lateral or supine sleep positioning reflects their response to advice from specialists, observation of their infants' comfort, ease of breathing, and personal experience. Outcomes, identified in published research of SDB, coincide with parents' concerns but are expressed in medical language and fit into distinct domains of "snoring," "sleep," "gas exchange," and "apnea." CONCLUSIONS: Parents' description of sleeping and respiration in infants with CP reflect their everyday experience, offering insight into their understanding, priorities, and language used to describe respiration. Understanding parents' individual priorities and how these are expressed could be fundamental to selecting meaningful outcomes for future studies of airway interventions.

A mixed-methods study of the management of hearing loss associated with otitis media with effusion in children with Down syndrome.

OBJECTIVES: To scope current service provision across England for management of otitis media with effusion and hearing loss in children with Down syndrome; to explore professional decision-making about managing otitis media with effusion and hearing loss; and to explore patient and public views on the direction of future research. DESIGN: Mixed methods including a service evaluation of NHS clinical practice through a structured telephone survey; a qualitative study of professional decision-making with in-depth interviews collected and analysed using grounded theory methods; patient/public involvement consultations. PARTICIPANTS: Twenty-one audiology services in England took part in the evaluation; 10 professionals participated in the qualitative study; 21 family members, 10 adults with Down syndrome and representatives from two charities contributed to the consultations. RESULTS: There was variation across services in the frequency of routine hearing surveillance, approaches to managing conductive hearing loss in infancy and provision of hearing aids and grommets. There was variation in how professionals describe their decision-making, reflecting individual treatment preferences, differing approaches to professional remit and institutional factors. The consultations identified that research should focus on improving practical support for managing the condition and supporting decision-making about interventions. CONCLUSIONS: There is system-level variation in the provision of services and individual-level variation in how professionals make clinical decisions. As a consequence, there is inequity of access to hearing health care for children with Down syndrome. Future research should focus on developing core outcomes for research and care, and on improving decision support for families.

Safe sleeping positions: practice and policy for babies with cleft palate.

Guidance recommends 'back to sleep' positioning for infants from birth in order to reduce the risk of sudden infant death. Exceptions have been made for babies with severe respiratory difficulties where lateral positioning may be recommended, although uncertainty exists for other conditions affecting the upper airway structures, such as cleft palate. This paper presents research of (i) current advice on sleep positioning provided to parents of infants with cleft palate in the UK; and (ii) decision making by clinical nurse specialists when advising parents of infants with cleft palate. A qualitative descriptive study used data from a national survey with clinical nurse specialists from 12 regional cleft centres in the UK to investigate current practice. Data were collected using semi-structured telephone interviews and analysed using content analysis. Over half the regional centres used lateral sleep positioning based on clinical judgement of the infants' respiratory effort and upper airway obstruction. Assessment relied upon clinical judgement augmented by a range of clinical indicators, such as measures of oxygen saturation, heart rate and respiration. CONCLUSION: Specialist practitioners face a clinical dilemma between adhering to standard 'back to sleep' guidance and responding to clinical assessment of respiratory effort for infants with cleft palate. In the absence of clear evidence, specialist centres rely on clinical judgement regarding respiratory problems to identify what they believe is the most appropriate sleeping position for infants with cleft palate. Further research is needed to determine the best sleep position for an infant with cleft palate. What is Known • Supine sleep positioning reduces the risk of sudden infant death in new born infants. • There is uncertainty about the benefits or risks of lateral sleep positioning for infants with upper airway restrictions arising from cleft palate. What is New • Variability exists in the information/advice provided to parents of infants with cleft palate regarding sleep positioning. • Over half the national specialist centres for cleft palate in the UK advise positioning infants with CP in the lateral position as a routine measure to reduce difficulties with respiration.

Parents' and children's knowledge of oral health: a qualitative study of children with cleft palate.

BACKGROUND: Children with cleft lip and/or palate (CLP) are prone to poorer oral health outcomes than their peers, with serious implications for treatment. Little is known of the knowledge and practice of children with CLP in caring for teeth and how these contribute to oral health. AIM: To investigate (i) parents' and children's knowledge of oral health, (ii) how knowledge is acquired, and (iii) how knowledge is implemented. DESIGN: A qualitative design was used to investigate knowledge, beliefs, and practices reported by parents and children, age 5-11 years with CLP. Data were collected from 22 parents and 16 children and analysed using thematic analysis. RESULTS: Four themes were derived as follows: (i) implicit knowledge: children express simple knowledge underpinned by basic rationales, (ii) situated knowledge: children gain skills as part of everyday childhood routines, (iii) maintaining good practice in oral health: parents take a lead role in motivating, monitoring, and maintaining children's toothbrushing, and (iv) learning opportunities: pivotal moments provide opportunities for children to extend their knowledge. CONCLUSION: Developers of oral health education interventions should take account of children's implicit knowledge and the transmission of beliefs between generations that influence toothbrushing behaviours. This could enhance interventions to support parents and children's practice.

Experience of maintaining tooth brushing for children born with a cleft lip and/or palate.

BACKGROUND: Children with a Cleft Lip and/or Palate (CL/P) have been reported to have poorer oral health than those without the condition. The consequences for these children can be particularly problematic due to implications for future treatments. Tooth brushing is an important behaviour contributing to children's oral health, but is under researched in the CL/P population. The aim of the study is to explore the experience of maintaining tooth brushing among children in the United Kingdom (UK) with a CL/P and their parents. METHODS: Semi-structured interviews were carried out with twenty-two parents and sixteen children with a CL/P (5-11 years), recruited at a cleft centre in the UK. Thematic analysis was used for data analysis. RESULTS: Three key themes were drawn from the qualitative data: first, parents of children with a CL/P generally had strong motivation to look after their children's teeth but children's motivation was inconsistent. Second, parents were primary enablers of children's tooth brushing behaviour, often employing approaches adapted to their child's characteristics to encourage tooth brushing. Third, a range of obstacles were encountered by parents and children in maintaining regular tooth brushing behaviours. They reported obstacles such as issues related to CL/P, 'forgetting' and childhood illness. CONCLUSIONS: The paper suggests that parents of children with a CL/P need support to enact their intention to maintain regular tooth brushing and prioritise tooth brushing within the context of demanding and dynamic family life.

Intergenerational differences in beliefs about healthy eating among carers of left-behind children in rural China: A qualitative study.

China's internal migration has left 61 million rural children living apart from parents and usually being cared for by grandparents. This study aims to explore caregivers' beliefs about healthy eating for left-behind children (LBC) in rural China. Twenty-six children aged 6-12 (21 LBC and 5 non-LBC) and 32 caregivers (21 grandparents, 9 mothers, and 2 uncles/aunts) were recruited in one township in rural China. Children were encouraged to keep food diaries followed by in-depth interviews with caregivers. Distinct intergenerational differences in beliefs about healthy eating emerged: the grandparent generation was concerned about not having enough food and tended to emphasise the importance of starchy foods for children's growth, due to their past experiences during the Great Famine. On the other hand, the parent generation was concerned about food safety and paid more attention to protein-source foods including meat, eggs and milk. Parents appeared to offer children high-energy food, which was viewed as a sign of economic status, rather than as part of a balanced diet. Lack of remittances from migrant parents may compromise LBC's food choices. These findings suggest the potential for LBC left in the care of grandparents, especially with experience of the Great Famine, may be at greater risk of malnutrition than children cared for by parents. By gaining an in-depth understanding of intergenerational differences in healthy eating beliefs for children, our findings could inform for the development of nutrition-related policies and interventions for LBC in rural China.

Otitis media with effusion: experiences of children with cleft palate and their parents.

OBJECTIVE: To explore the views of children with cleft palate and their parents about daily life with otitis media with effusion and associated hearing loss. DESIGN: A qualitative study. Semistructured interviews were used to collect data from parents. Participatory techniques, including activities on a tablet computer, were used to collect data from children. Framework analysis was applied to interview transcripts. SETTING: Two English cleft units. PARTICIPANTS: A purposive sample of parents of 37 children aged 0 to 11 years with experience of otitis media with effusion. Their children also took part if aged 6 to 11 years (n = 22). RESULTS: Themes related to the following: (1) emotions (frustration, anger, sadness, happiness, anxiety), (2) educational experiences (struggling at school, having to sit at the front of the class, requiring extra support, missing lessons for appointments or due to ear infections), (3) social interactions (isolation, communication, reliance on siblings, participation in activities). CONCLUSIONS: A number of areas of interviewees' everyday life were affected by the presence of otitis media with effusion. Parents may need to be forewarned about the possible ongoing nature of this condition and its impact on a child's social and emotional experiences. Children may also benefit from age-appropriate information about otitis media with effusion and its treatment, including information on hearing tests, to help reduce any anxiety.

Developing biographies: the experiences of children, young people and their parents of living with a long-term condition.

This article reports on data from a qualitative interview study that sought to understand the experiences, choices and actions of children and young people undergoing surgery for a long-term condition and that of their parents. Using the concept of biography the article examines how the biographies of children, young people and their parents can be influenced by surgery and the ongoing management of a long-term continence condition. This article challenges previous work that characterises the presence of a condition from birth as a continuous and normal part of the illness experiences of these patients. Although this may be the case in some instances, children, young people and their parents can experience diverse and changing experiences associated with ongoing condition management as well as surgery. Biographical continuity, enrichment and disruption are all relevant concepts for such patients living with a long-term continence condition. These can be influenced by their previous experiences of their condition, their expectations, and dynamics with parents, including changes associated with development and the increasing independence of young people.

Substituting community children's nursing services for inpatient care: a case study of costs and effects.

OBJECTIVE: To compare children's pathways to and through Community Children's Nursing Team (CCNT) care, and NHS costs, before and after relocation of inpatient services and extension of a paediatric Emergency Department and Observation and Assessment Unit (ED/OAU). DESIGN: Case study. Routinely collected data on activity and staffing were provided by the CCNT. Parents completed questionnaires about their child's use of healthcare services and satisfaction with care preservice reconfiguration (n=221) or postreconfiguration (n=210). The cost of service use was compared prereconfiguration and postreconfiguration. PATIENTS: Children referred to CCNT care. MAIN OUTCOME MEASURES: Healthcare service use and associated costs, satisfaction with CCNT care. RESULTS: The mean number of services used before referral to the CCNT reduced from 2.8 to 1.6, and the proportion using only one service increased from 26% (n=58) to 61% (n=128). Inpatient admission during CCNT care reduced from 6% (n=13) to 2% (n=4), and ED attendance from 37% (n=79) to 16% (n=31). There was a considerable fall (25%) in the cost of CCNT care, and a sharp fall (55%) in the average overall NHS cost of care. CCNT care was rated 'excellent' or 'very good' by 85% of respondents both prereconfiguration and postreconfiguration. CONCLUSIONS: A CCNT provided an alternative to hospitalisation when acute general paediatric services were reconfigured to substitute for a relocated hospital. Children's pathways to CCNT care were shortened. The average cost of CCNT care and overall NHS cost were lower following reconfiguration. Satisfaction remained high throughout.

Student help seeking from pastoral care in UK high schools: a qualitative study.

BACKGROUND: Little is known about high school students' perceptions of school-based pastoral support. This study aimed to explore this in the context of a high school-based emotional support project. METHODS: Qualitative interviews explored perspectives on help seeking of students (N = 23) and staff (N = 27) in three UK high schools where a pastoral project was introduced. Data were analysed thematically. RESULTS: Student peer groups perceived help seeking as a sign of weakness. However, students valued learning skills in managing emotions and friendships. Staff expressed concerns about students' ability to help seek proactively, and highlighted organisational influences on pastoral support. CONCLUSIONS: Increasing student control over the process, and involving trusted staff, could encourage help seeking in high school. It is possible to access the views of students who do not help seek, to improve understanding of help-seeking behaviour.

Transition in endocrinology: the challenge of maintaining continuity.

OBJECTIVE: Transition from child to adult status is a crucial stage in young people's lives. It is important that young people continue to receive appropriate endocrine care throughout and following transfer from paediatric to adult services. This study examined indicators of patient loss to follow-up at initial transfer from paediatric care to identify implications for transitional care practice and research. METHODS: A retrospective analysis of patient data following transfer from paediatric services to a young person's transition clinic was conducted. Attendance data from 103 patients transferred to the Young Person's Clinic were analysed to determine the factors affecting nonattendance 1-year post-transfer. RESULTS: We found that overall one quarter of patients did not attend the young person's clinic in the first year after transfer. Those with poor attendance prior to transfer were likely to be poor attenders post-transfer. Further, those without an appointment scheduled in the first 6 months of their final paediatric transfer appointment were less likely to attend in the first year. CONCLUSIONS: Young people are at risk of losing contact during the transfer from paediatric to the young person's clinic. Measures that promote continuity of contact could reduce the risk of long-term disengagement with care. Further development and research is required to identify the best ways to help young people with endocrine conditions in the transition from child to adult status.

Avoiding inappropriate paediatric admission: facilitating General Practitioner referral to Community Children's Nursing Teams.

BACKGROUND: Children's emergency admissions in England are increasing. Community Children's Nursing Teams (CCNTs) have developed services to manage acutely ill children at home to reduce demand for unscheduled care. Referral between General Practitioners (GPs) and CCNTs may reduce avoidable admissions and minimise the psychosocial and financial impact of hospitalisation on children, families and the NHS. However, facilitators of GP referral to CCNTs are not known. The aim of this study was to identify facilitators of GP referral to CCNTs. METHODS: Semi-structured interviews with 39 health professionals were conducted between June 2009 and February 2010 in three Primary Care Trusts served by CCNTs in North West England. Interviewees included GPs, Community Children's Nurses (CCNs), consultant paediatricians, commissioners, and service managers. Qualitative data were analysed thematically using the Framework approach in NVivo 8. RESULTS: Five facilitators were identified: 1) CCN/CCNT visibility; 2) clear clinical governance procedures; 3) financial and organisational investment in the role of CCNTs in acute care pathways; 4) access and out of hours availability; 5) facilitative financial frameworks. CONCLUSION: GPs required confidence in CCNs' competence to safely manage acutely ill children at home and secure rapid referral if a child's condition deteriorated. Incremental approaches to developing GP referral to CCNTs underpinned by clear clinical governance protocols are likely to be most effective in building GP confidence and avoiding inappropriate admission.

Developing an intervention to promote young people's participation in asthma review consultations with practice nurses.

AIM: The article is a report of a study to develop an evidence-based pre-consultation guide for young people to use prior to an asthma review with a practice nurse. BACKGROUND: The participation of young people aged 13-19 in consultations with health professionals can be limited by the lack of opportunity to learn the appropriate skills in triadic consultations. Evidence-based interventions to promote participation of adults in consultations have been developed but young people's needs have not been specifically addressed. DESIGN: Multiple methods design informed by guidelines for the development of complex interventions. METHODS: A pre-consultation guide for young people was developed in 2007 by application of a model of health behaviour change, development of criteria by an expert panel and in consultation with young people using a nominal group technique. RESULTS: The concepts of the Health Action Process Approach model were applied to the development of criteria underpinning the pre-consultation guide. In the nominal groups young people agreed that they had different needs to other children and adults. The consensus was that the preconsultation guide should include disease-specific information, realistic photographs rather than Clip Art, consistent styles of fonts, bullet points and colours, short words and mature language. Statements and example questions written by young people were included in the evidence-based guide. CONCLUSION: Young people's views can contribute to the development of interventions designed to promote communication in consultations with nurses. There is potential for this approach to be used to develop interventions in primary and secondary care of a range of long-term conditions.

Enhancing parents' confidence to care in acute childhood illness: triangulation of findings from a mixed methods study of Community Children's Nursing.

BACKGROUND: Children's emergency hospital use is of concern internationally, but there has been little examination of home care by nurses. AIMS: To examine the care provided by community children's nurses during acute illness. DESIGN: Triangulation of findings from case studies of three Community Children's Nursing Teams. METHODS: Parents or carers (n = 763) completed questionnaires between 2008-2010 about their contacts with nurses and satisfaction with aspects and overall assessment of nursing care provided. Eighty-one individuals participated in semi-structured interviews: 29 parents/carers described their experiences and explained their questionnaire responses in more detail; 13 children talked about their care both in hospital and at home; and 39 nurses and other healthcare providers explained how nurses supported care of children at home. Questionnaire data were analysed descriptively and interview data qualitatively. The findings were integrated by triangulation of methods (questionnaires and interviews) and of data from different informants (children, parents, healthcare providers). RESULTS: Nursing care most frequently took the form of advice and education by either home visits or telephone contact. Parents and children were reassured by access to nurses and it gave them confidence to care at home. Most respondents thought that it reduced the time their children spent in hospital. CONCLUSIONS: Nurses can make an important contribution to supporting parents to care confidently for their children at home to reduce or even to avoid hospitalization for acute conditions and give them confidence to manage future episodes of illness.

Comparison of the costs of care during acute illness by two community children's nursing teams.

OBJECTIVE: To compare the costs associated with care by two community children's nursing teams (CCNT). DESIGN: A case study incorporating questionnaire survey, analysis of routinely collected data and analysis of costs in the north-west England. PATIENTS: Children with acute illness referred for CCNT care. INTERVENTIONS: Two CCNT provided care for 273 children during acute illness in order to reduce the number and duration of hospital admissions. MAIN OUTCOME MEASURES: Costs of CCNT, other services and costs to families. RESULTS: The objectives of both CCNT included shortening and avoiding hospitalisations. Most (45 (58%) in case A and 150 (77%) in case B) children were referred for infections. There were differences in the proportion of children who had been hospitalised (45 (57.7%) and 78 (40%)), the mean number of services used before referral to CCNT (1.6 and 2.2) and the staffing profile of the CCNT. There was a statistically significant difference in the overall mean cost to the NHS of CCNT care (£146 and £238, 95% CI for difference of means 7 to 184), associated with higher proportions of children having telephone-only contact (two (3%) and 46 (24%)) and children using almost twice as many other health services during care by one CCNT (means 0.27 and 0.51). CONCLUSIONS: Costs of CCNT care can vary widely when all health service use is taken into account. Differences in the way CCNT are integrated with the urgent care system, and the way in which CCNT care is organised, could contribute to variations in costs.