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1.
Clin Diabetes ; 40(2): 196-203, 2022.
Article in English | MEDLINE | ID: mdl-35669300

ABSTRACT

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.

2.
Curr Diabetes Rev ; 18(9): e140222201109, 2022.
Article in English | MEDLINE | ID: mdl-35156585

ABSTRACT

BACKGROUND: Type 1 diabetes is the most common endocrine condition among adolescents. Diabetes self-management can be challenging during adolescence. OBJECTIVE: The objective of this study is to understand how adolescents and their parents manage type 1 diabetes in Jordan. METHODS: Constructivist grounded theory methodology principles were used to achieve the study aim. A total of 48 participants were recruited using purposive and theoretical sampling techniques, including adolescents and their parents. Data were collected (October 2016 - April 2017) using 38 semi-structured, audio-recorded interviews (one-to-one or joint interviews based on participants' preferences). Data were collected and analyzed concurrently using different levels of coding, constant comparative analysis, and memo writing. This study was approved by relevant ethics committees from the University of Manchester and Jordan University Hospital. RESULTS: The theme of living with diabetes is presented and discussed in this article. Culture emerged as the central theme; two aspects of culture are presented in this article: collectivism and cultural beliefs. CONCLUSION: This study identified that diabetes self-management could be influenced by the culture in which Jordanian adolescents live in as well as being shaped by their religious beliefs. These findings are potentially transferable to other Arab and non-Arab countries that share similar cultural aspects and religious beliefs.


Subject(s)
Diabetes Mellitus, Type 1 , Self-Management , Adolescent , Diabetes Mellitus, Type 1/therapy , Health Behavior , Humans , Jordan , Parents
3.
Cleft Palate Craniofac J ; 59(2): 254-261, 2022 02.
Article in English | MEDLINE | ID: mdl-33792409

ABSTRACT

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.


Subject(s)
Cleft Palate , Sleep Apnea Syndromes , Cohort Studies , Feasibility Studies , Humans , Infant , Sleep , Supine Position
4.
Appetite ; 167: 105617, 2021 12 01.
Article in English | MEDLINE | ID: mdl-34343609

ABSTRACT

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.


Subject(s)
Health Knowledge, Attitudes, Practice , Mothers , Breast Feeding , Child , Child, Preschool , Feeding Behavior , Female , Ghana , Humans , Infant , Rural Population
5.
Compr Child Adolesc Nurs ; 44(2): 144-160, 2021 Jun.
Article in English | MEDLINE | ID: mdl-32442024

ABSTRACT

Safer sex provision, including contraception information and services, should be made available to adolescents regardless of their marital status in strategies to reduce the incidence of unintended teenage pregnancies and the spread of STIs. In Malaysia, this information is still not being delivered formally to adolescents even though unintended teenage pregnancies and the practice of "baby dumping" are serious public health issues. The aims of this article are to describe the Malaysian context in terms of the need for comprehensive sexual and reproductive health information and treatment for unmarried adolescents. The article presents the key aspects of Malaysian society and the potential influence on the provision and delivery of sexual and reproductive health information and treatment to unmarried Malaysian adolescents that can be a reference for healthcare professionals especially school health nurses. The article also describes the establishment of sheltered homes, baby hatches and unregulated adoption processes as the initiatives being taken to address the issue of unintended teenage pregnancies. This article suggests that the policy and laws that require parental consent for accessing the services need to be reviewed and revised to ensure that specific services are available to adolescents in a safe environment that maintains confidentiality.


Subject(s)
Pregnancy in Adolescence , Reproductive Health Services , Adolescent , Contraception , Female , Humans , Malaysia , Pregnancy , Sexual Behavior
6.
Matern Child Nutr ; 17(2): e13085, 2021 04.
Article in English | MEDLINE | ID: mdl-33001571

ABSTRACT

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.


Subject(s)
Breast Feeding , Caregivers , Adult , Child , Child, Preschool , Diet , Female , Ghana , Humans , Male , Perception
7.
J Behav Med ; 43(1): 80-87, 2020 02.
Article in English | MEDLINE | ID: mdl-31154601

ABSTRACT

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.


Subject(s)
Child Behavior , Health Behavior , Oral Health , Randomized Controlled Trials as Topic , Adult , Child , Child, Preschool , Family , Female , Humans , Intention , Male
9.
Cleft Palate Craniofac J ; 56(2): 222-230, 2019 02.
Article in English | MEDLINE | ID: mdl-29665338

ABSTRACT

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.


Subject(s)
Cleft Palate , Sleep Apnea Syndromes , Humans , Infant , Parents , Snoring , United Kingdom
10.
Clin Otolaryngol ; 44(1): 32-38, 2019 01.
Article in English | MEDLINE | ID: mdl-30222906

ABSTRACT

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.


Subject(s)
Down Syndrome/complications , Hearing Loss/etiology , Hearing Loss/rehabilitation , Otitis Media with Effusion/complications , State Medicine/organization & administration , Child , England , Female , Humans , Male , Qualitative Research
11.
Article in English | MEDLINE | ID: mdl-28725453

ABSTRACT

BACKGROUND: Implementation intentions enable individuals to translate good intentions into action. Parents and children can find maintaining oral health difficult, as evidenced by the presence of tooth decay. This is a common condition in children in spite of being preventable through the use of regular tooth brushing, fluoride protection and avoiding sugar intake. Even when parents and children are positive about looking after the teeth, they can face challenges in maintaining consistent habits. The aim of this paper is to describe the design of a video animation to teach parents and children how to use implementation intentions to establish new habits to improve oral health, applied in this case, to parents and children with cleft lip and/or palate (CLP). METHODS: Evidence from a qualitative study of parents' and children's knowledge, beliefs and behaviour informed the design of an animation forming part of an intervention for children and parents using implementation intentions. The user views generated a set of guiding principles to determine the style and content of a teaching video, whilst an animation designer translated the key messages of implementation intention into images and characters appealing and meaningful to the target audience of children and parents. RESULTS: A team of researchers, an animation designer and a script writer designed a 2-min video as a teaching tool for children and parents. The team drafted and iteratively refined the content and visuals, with guidance from an advisory group and informal discussions with children in the target age group and their parents. Planning, consulting, designing and production of the animation spanned a total of 20 weeks. The video explains how to formulate 'if-then' plans using the voices of a boy and his mother in a conversation, with examples from oral health to illustrate how to enact intentions. It is available via digital media and designed to be delivered by dental care practitioners. The effectiveness of the intervention will be evaluated as part of a feasibility study. CONCLUSION: The current study describes the development of an intervention mediated through an animation tutorial that enables children and parents to devise 'if-then' plans to improve oral health as a collaborative endeavour between parents and children. The animation uses examples from oral health, but we believe there is scope for exploring application of the intervention to other areas of behaviour.

12.
BMC Oral Health ; 17(1): 120, 2017 Aug 24.
Article in English | MEDLINE | ID: mdl-28836989

ABSTRACT

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.


Subject(s)
Cleft Lip/psychology , Cleft Palate/psychology , Motivation , Parents/psychology , Toothbrushing , Child , Child Behavior , Child, Preschool , Female , Humans , Intention , Male , Oral Health , Qualitative Research
13.
Eur J Pediatr ; 176(5): 661-667, 2017 May.
Article in English | MEDLINE | ID: mdl-28331972

ABSTRACT

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.


Subject(s)
Cleft Palate , Practice Guidelines as Topic , Sleep/physiology , Sudden Infant Death/prevention & control , Supine Position/physiology , Humans , Infant , Infant Care/methods , Nurse Clinicians , Prone Position/physiology , Qualitative Research , Risk Factors , Sudden Infant Death/etiology , Surveys and Questionnaires , United Kingdom
14.
Int J Paediatr Dent ; 27(4): 264-272, 2017 Jul.
Article in English | MEDLINE | ID: mdl-27532347

ABSTRACT

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.


Subject(s)
Cleft Palate , Health Knowledge, Attitudes, Practice , Oral Hygiene , Parents , Child , Child, Preschool , Humans , Qualitative Research
15.
Health Technol Assess ; 19(68): 1-374, 2015 Aug.
Article in English | MEDLINE | ID: mdl-26321161

ABSTRACT

BACKGROUND: Cleft lip and palate are among the most common congenital malformations, with an incidence of around 1 in 700. Cleft palate (CP) results in impaired Eustachian tube function, and 90% of children with CP have otitis media with effusion (OME) histories. There are several approaches to management, including watchful waiting, the provision of hearing aids (HAs) and the insertion of ventilation tubes (VTs). However, the evidence underpinning these strategies is unclear and there is a need to determine which treatment is the most appropriate. OBJECTIVES: To identify the optimum study design, increase understanding of the impact of OME, determine the value of future research and develop a core outcome set (COS) for use in future studies. DESIGN: The management of Otitis Media with Effusion in children with cleft palate (mOMEnt) study had four key components: (i) a survey evaluation of current clinical practice in each cleft centre; (ii) economic modelling and value of information (VOI) analysis to determine if the extent of existing decision uncertainty justifies the cost of further research; (iii) qualitative research to capture patient and parent opinion regarding willingness to participate in a trial and important outcomes; and (iv) the development of a COS for use in future effectiveness trials of OME in children with CP. SETTING: The survey was carried out by e-mail with cleft centres. The qualitative research interviews took place in patients' homes. The COS was developed with health professionals and parents using a web-based Delphi exercise and a consensus meeting. PARTICIPANTS: Clinicians working in the UK cleft centres, and parents and patients affected by CP and identified through two cleft clinics in the UK, or through the Cleft Lip and Palate Association. RESULTS: The clinician survey revealed that care was predominantly delivered via a 'hub-and-spoke' model; there was some uncertainty about treatment strategies; it is not current practice to insert VTs at the time of palate repair; centres were in a position to take part in a future study; and the response rate to the survey was not good, representing a potential concern about future co-operation. A COS reflecting the opinions of clinicians and parents was developed, which included nine core outcomes important to both health-care professionals and parents. The qualitative research suggested that a trial would have a 25% recruitment rate, and although hearing was a key outcome, this was likely to be due to its psychosocial consequences. The VOI analysis suggested that the current uncertainty justified the costs of future research. CONCLUSIONS: There exists significant uncertainty regarding the best management strategy for persistent OME in children with clefts, reflecting a lack of high-quality evidence regarding the effectiveness of individual treatments. It is feasible, cost-effective and of significance to clinicians and parents to undertake a trial examining the effectiveness of VTs and HAs for children with CP. However, in view of concerns about recruitment rate and engagement with the clinicians, we recommend that a trial with an internal pilot is considered. FUNDING: The National Institute for Health Research Health Technology Assessment programme. This study was part-funded by the Healing Foundation supported by the Vocational Training Charitable Trust who funded trial staff including the study co-ordinator, information systems developer, study statistician, administrator and supervisory staff.


Subject(s)
Cleft Palate/complications , Cleft Palate/therapy , Otitis Media with Effusion/complications , Otitis Media with Effusion/therapy , Adolescent , Child , Child, Preschool , Cleft Palate/economics , Cost-Benefit Analysis , Delphi Technique , Feasibility Studies , Female , Hearing Aids , Hearing Disorders/prevention & control , Humans , Infant , Interviews as Topic , Male , Middle Ear Ventilation , Otitis Media with Effusion/economics , Patient Selection , Speech Disorders/prevention & control , Surveys and Questionnaires , United Kingdom
16.
Appetite ; 95: 484-91, 2015 Dec.
Article in English | MEDLINE | ID: mdl-26299714

ABSTRACT

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.


Subject(s)
Culture , Diet , Feeding Behavior , Grandparents , Health Behavior , Parents , Transients and Migrants , Attitude , Caregivers , Child , Child Rearing , China , Female , History, 20th Century , Humans , Male , Malnutrition/etiology , Parenting , Qualitative Research , Rural Population , Socioeconomic Factors , Starvation/history , Surveys and Questionnaires
17.
J Spec Pediatr Nurs ; 20(4): 280-9, 2015 Oct.
Article in English | MEDLINE | ID: mdl-26149202

ABSTRACT

PURPOSE: To explore the experiences of parents whose child received a late diagnosis of cleft palate (>24 hr after birth). DESIGN AND METHODS: Parents of 17 children and three nurses specialised in cleft care (specialist nurses) took part in a qualitative, semi-structured interview. Framework analysis was applied to data. RESULTS: Loss and rebuilding was an overarching concept-from the crescendo leading up to the bombshell of diagnosis, followed by the aftermath of dealing with the child's long-term condition. PRACTICE IMPLICATIONS: Specialist nurses can help parents to trust healthcare professionals and to feel confident in their ability to nurture by listening, informing, and supporting.


Subject(s)
Adaptation, Physiological , Adaptation, Psychological , Cleft Palate/diagnosis , Cleft Palate/surgery , Delayed Diagnosis/adverse effects , Quality of Life , Age Factors , Child, Preschool , Cleft Palate/psychology , Delayed Diagnosis/statistics & numerical data , Female , Humans , Infant , Infant, Newborn , Interviews as Topic , Male , Parent-Child Relations , Qualitative Research , Plastic Surgery Procedures/adverse effects , Plastic Surgery Procedures/methods , Risk Assessment , Sex Factors , Treatment Outcome
18.
PLoS One ; 10(6): e0129514, 2015.
Article in English | MEDLINE | ID: mdl-26115172

ABSTRACT

BACKGROUND: Approximately 75% of children with cleft palate (CP) have Otitis Media with Effusion (OME) histories. Evidence for the effective management of OME in these children is lacking. The inconsistency in outcome measurement in previous studies has led to a call for the development of a Core Outcome Set (COS). Despite the increase in the number of published COS, involvement of patients in the COS development process, and methods to integrate the views of patients and health professionals, to date have been limited. METHODS AND FINDINGS: A list of outcomes measured in previous research was identified through reviewing the literature. Opinion on the importance of each of these outcomes was then sought from key stakeholders: Ear, Nose and Throat (ENT) surgeons, audiologists, cleft surgeons, speech and language therapists, specialist cleft nurses, psychologists, parents and children. The opinion of health professionals was sought in a three round Delphi survey where participants were asked to score each outcome using a bespoke online system. Parents and children were also asked to score outcomes in a survey and provided an in-depth insight into having OME through semi-structured interviews. The results of the Delphi survey, interviews and parent/patient survey were brought together in a final consensus meeting with representation from all stakeholders. A final set of eleven outcomes reached the definition of "consensus in" to form the recommended COS: hearing; chronic otitis media (COM); OME; receptive language skills; speech development; psycho social development; acute otitis media (AOM); cholesteatoma; side effects of treatment; listening skills; otalgia. CONCLUSIONS: We have produced a recommendation about the outcomes that should be measured, as a minimum, in studies of the management of OME in children with CP. The development process included input from key stakeholders and used novel methodology to integrate the opinion of healthcare professionals, parents and children.


Subject(s)
Cleft Palate/epidemiology , Otitis Media with Effusion/epidemiology , Child , Child, Preschool , Cleft Palate/complications , Cleft Palate/therapy , Consensus , Disease Management , Health Occupations , Humans , Infant , Infant, Newborn , Male , Otitis Media with Effusion/etiology , Otitis Media with Effusion/therapy , Outcome Assessment, Health Care , Parents , Surveys and Questionnaires
19.
Cleft Palate Craniofac J ; 52(1): 23-30, 2015 Jan.
Article in English | MEDLINE | ID: mdl-24237229

ABSTRACT

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.


Subject(s)
Cleft Palate/complications , Cleft Palate/psychology , Otitis Media with Effusion/complications , Otitis Media with Effusion/psychology , Parents/psychology , Activities of Daily Living , Child , Child, Preschool , Female , Humans , Infant , Infant, Newborn , Interviews as Topic , Male , Qualitative Research , United Kingdom
20.
J Ren Care ; 40(2): 117-24, 2014 Jun.
Article in English | MEDLINE | ID: mdl-24646007

ABSTRACT

BACKGROUND: The National Kidney Foundation-Dialysis Outcomes Quality Initiative (KDOQI) guidelines and the Renal Association recommend the use of either Kt/V or urea reduction ratio (URR) to measure haemodialysis adequacy. OBJECTIVES: To determine the methods used to measure paediatric haemodialysis adequacy and to assess consistency between calculations of single pool Kt/V (spKt/V) and URR. DESIGN: A service evaluation was conducted to establish current practices in measuring dialysis adequacy. A prospective longitudinal study was conducted to compare spKt/V and URR. PARTICIPANTS: Thirty-two children were recruited consisting of 13 males and 19 females in five paediatric dialysis centres. RESULTS: Inconsistencies were reported of the method of post-urea sampling with 4 of the 10 centres using the KDOQI recommended sampling method. Five dialysis centres reported using URR and five reported using spKt/V. There were substantial differences between the two measures. Using URR suggested that up to 44% of children did not receive adequate dialysis, whereas measurement by spKt/V suggested no more than 6% of the same dialysis sessions were not adequate. CONCLUSION: One standard measure should be used to assess dialysis adequacy in paediatric centres in England. KDOQI guidelines were not consistently followed in obtaining a post-urea blood sample and this procedure should be standardised.


Subject(s)
Blood Urea Nitrogen , Guideline Adherence , Kidney Failure, Chronic/blood , Kidney Failure, Chronic/nursing , Renal Dialysis/nursing , Adolescent , Child , Child, Preschool , England , Female , Hemodialysis Solutions , Hemodialysis Units, Hospital , Humans , Male , Reference Values , Treatment Outcome
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