RESUMEN
AIM AND OBJECTIVES: To examine the needs and perspectives regarding healthcare transition for adolescents and young adults (AYAs) with the following long-term conditions: diabetes, cystic fibrosis and congenital heart disease. BACKGROUND: Transition of AYAs within healthcare services has become increasingly important as more children are surviving into adulthood with long-term conditions. Yet, limited empirical evidence exists regarding transition experiences. DESIGN: Qualitative study fulfilling the completed consolidated criteria for reporting qualitative studies criteria (see Appendix S1). METHODS: Semi-structured interviews with AYAs aged 14-25 years (n = 47), parents (n = 37) and health professionals (n = 32), which was part of a larger mixed-methods study. Sample was recruited from two children's hospitals and four general hospitals in Ireland. RESULTS: Transfer occurred between the ages of 16-early 20s years depending on the service. None of the hospitals had a transition policy, and transition practices varied considerably. Adolescents worried about facing the unknown, communicating and trusting new staff and self-management. The transition process was smooth for some young adults, while others experienced a very abrupt transfer. Parents desired greater involvement in the transition process with some perceiving a lack of recognition of the importance of their role. In paediatric services, nurses reported following-up adolescents who struggled with treatment adherence and clinic attendance, whereas after transfer, little effort was made to engage young adults if there were lapses in care, as this was generally considered the young adults' prerogative. CONCLUSIONS: The amount of preparation and the degree to which the shift in responsibility had occurred prior to transition appeared to influence successful transition for AYAs and their parents. RELEVANCE TO CLINICAL PRACTICE: Nurses in collaboration with the multidisciplinary team can help AYAs develop their self-management skills and guide parents on how to relinquish responsibility gradually prior to transition.
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Enfermedad Crónica/psicología , Personal de Salud/psicología , Padres/psicología , Transición a la Atención de Adultos/organización & administración , Adolescente , Adulto , Niño , Enfermedad Crónica/terapia , Fibrosis Quística/psicología , Fibrosis Quística/terapia , Diabetes Mellitus Tipo 1/psicología , Diabetes Mellitus Tipo 1/terapia , Femenino , Cardiopatías Congénitas/psicología , Cardiopatías Congénitas/terapia , Humanos , Irlanda , Masculino , Relaciones Profesional-Paciente , Investigación Cualitativa , Adulto JovenRESUMEN
As survival increases worldwide, large numbers of young people will need to transition from child to adult cystic fibrosis (CF) services. Little is known about the best method for transitioning patients with CF and which transition programmes yield better outcomes. This paper provides a systematic review of the empirical literature on the outcomes and experiences of transition for young people with CF. Outcomes data were subject to a narrative synthesis and a thematic synthesis of experiences data. Structured transition programmes were associated with increased satisfaction, discussions about transition, self-care and self-advocacy skills, more independence, lower anxiety, and increased self-management and parent management of physiotherapy and nutritional supplementation. Young people's concerns included leaving behind previous caregivers, differences in care provision and infection risks. Lack of preparation was a consistent theme. The two most useful aspects of transition programmes were meeting the adult doctors/CF specialist nurse/team and visiting the adult centre. Young people want education about the differences between services, implications of their condition and self-care management. Structured transition programmes appear to impact positively on experiences but the contribution of the different components of transition programmes is unclear. The absence of high-quality studies indicates the need for more well-designed research.
Asunto(s)
Fibrosis Quística/terapia , Autocuidado , Transición a la Atención de Adultos , Adolescente , Manejo de la Enfermedad , Accesibilidad a los Servicios de Salud , Humanos , Padres , Investigación Cualitativa , Adulto JovenRESUMEN
OBJECTIVES: research suggests that information provided to parents about newborn bloodspot screening (NBS) can be inconsistent. The majority of international NBS programmes recommend that parents should receive information about NBS in the antenatal period, however prior studies have mostly focused on postnatal women's knowledge, with no quantitative study of women's knowledge in the antenatal period conducted to date. Thus, the aim of this study was to determine if antenatal women received information about NBS in the antenatal period and to evaluate their knowledge and attitudes about NBS. DESIGN/PARTICIPANTS: we conducted a cross-sectional study among antenatal attendees at three maternity hospitals in Ireland. A total of 662 antenatal women (≥36 weeks gestation) were recruited into the study (279 primiparous, 368 multiparous). Women were asked to complete a self reported knowledge and attitude questionnaire about NBS. FINDINGS: primiparity (OR 2.75; 95% CI 1.65, 4.59) lower educational status (OR 1.79; 95% CI 1.02, 3.15) and not having private health insurance (OR 1.84; 95% CI 1.19, 2.85) were independently associated with poor NBS knowledge. Fourteen per cent of antenatal women recalled receiving an information leaflet about NBS, yet over 87 % reported that they would like more information. Thirty four per cent of women agreed that they understand everything they need to know about NBS. CONCLUSIONS/IMPLICATIONS FOR PRACTICE: the process of providing women with information about NBS in the antenatal period is inconsistent; consequently their awareness about NBS is limited. To make an informed choice about NBS women require information to be provided in a more structured format. There are many missed opportunities in the antenatal period for maternity care providers to provide women with information about NBS. Our study recommends that healthcare providers should have a more formal and structured approach with regard to the provision of information about NBS in the antenatal period. This could be achieved by incorporating NBS education into antenatal education classes or through multimedia while women are waiting in the antenatal clinic. Healthcare providers may need education about the importance and benefits of providing women with information about NBS in the antenatal period.
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Conocimientos, Actitudes y Práctica en Salud , Tamizaje Neonatal/psicología , Mujeres Embarazadas/psicología , Adolescente , Adulto , Estudios Transversales , Femenino , Humanos , Recién Nacido , Irlanda , Tamizaje Neonatal/métodos , Embarazo , Encuestas y CuestionariosRESUMEN
The aim of this study was to examine the impact of dietary restraint and attitudes to weight gain on gestational weight gain. This is a prospective cohort study of 799 women recruited at their first antenatal care visit. They provided information on pre-pregnancy dietary restraint behaviours (weight cycling, dieting and restrained eating) and attitudes to weight gain during pregnancy at a mean of 15 weeks' gestation. We examined the relationship of these variables with absolute gestational weight gain and both insufficient and excessive gestational weight gain, as defined by the Institute of Medicine recommendations. Multivariable analysis revealed that restrained eating, weight cycling and dieting were associated with higher absolute weight gain, whilst weight cycling only was associated with excessive weight gain. There was no evidence that the relationships between the dietary restraint measures and the weight gain outcomes were mediated by pregnancy-associated change in food intake. Increased concern about weight gain during pregnancy was independently associated with higher absolute weight gain and excessive weight gain. These relationships were attenuated following adjustments for pregnancy-associated change in food intake. These findings suggest that in early pregnancy, both a history of fluctuations in body weight and worry about gestational weight gain, are indicators of high pregnancy weight gain. Concern about weight gain during pregnancy seems to partly arise from an awareness of increased food intake since becoming pregnant. Prenatal dietary counselling should include consideration of past dieting practices and attitudes to pregnancy weight gain.
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Actitud Frente a la Salud , Dieta/psicología , Ingestión de Alimentos/psicología , Conducta Alimentaria/psicología , Aumento de Peso , Adulto , Dieta/métodos , Femenino , Humanos , Análisis Multivariante , Sobrepeso/psicología , Embarazo , Complicaciones del Embarazo/psicología , Estudios ProspectivosRESUMEN
This review synthesizes the empirical literature on outcomes and experiences of transfer and transition from pediatric to adult care for young people with congenital heart disease. A systematic review of papers published between January 2001 and May 2013 that examined outcomes or experiences of transfer and transition among young people with congenital heart disease was conducted. Data were extracted by two independent reviewers with the outcomes data combined using narrative synthesis and the experiences data integrated using thematic synthesis. Thirteen papers were included in the review: six reported outcomes following transfer, six reported experiences of transfer and transition, and one reported both outcomes and experiences. The review data indicate that high proportions of young people were lost to follow-up or experienced long gaps in care after leaving pediatric cardiology. Factors that protected against loss to follow-up or lapse in care included: beliefs that specialized adult care was necessary; poorer health status; attendance at pediatric appointments without parents; and pediatric referral to an adult congenital heart disease center. Data on experiences highlighted that many young people were unconcerned about transition, but lacked knowledge about their condition and were insufficiently prepared for transfer. In terms of adult services, many young people desired continuity in the quality of care, youth-oriented facilities, a personalized approach, and for their parents to remain involved in their care, but in a secondary, supportive capacity. In conclusion, the high proportions of young people lost to follow-up highlight the need for formal transition programs, which ensure a planned and coordinated transfer. Patients with congenital heart disease need education throughout adolescence about the implications of their condition, the differences between pediatric and adult services, and self-care management.
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Servicios de Salud del Adolescente , Cardiología/métodos , Cardiopatías Congénitas/terapia , Pediatría/métodos , Evaluación de Procesos, Atención de Salud , Transición a la Atención de Adultos , Adolescente , Adulto , Factores de Edad , Niño , Conocimientos, Actitudes y Práctica en Salud , Cardiopatías Congénitas/diagnóstico , Cardiopatías Congénitas/fisiopatología , Humanos , Perdida de Seguimiento , Cooperación del Paciente , Educación del Paciente como Asunto , Factores de Tiempo , Resultado del Tratamiento , Adulto JovenRESUMEN
OBJECTIVE: To examine the influence of health behaviours and psychological well-being on gestational weight gain using a biopsychosocial model. DESIGN: A prospective cohort study of pregnant women consecutively recruited at their first antenatal care visit. A self-administered questionnaire was used to collect data on health behaviours and psychological well-being in early pregnancy. Linear regression and logistic regression were used to identify predictors of total weight gain in kilograms and weight gain outside the current Institute of Medicine recommendations, respectively. SETTING: A maternity hospital in the Republic of Ireland. SUBJECTS: Data on 799 women were analysed. RESULTS: Pre-pregnant BMI ≥30·0 kg/m2, short stature, parity >0, decreased food intake and absence of health insurance predicted lower absolute gestational weight gain, while foreign nationality, consumption of takeaway meals more than once weekly and increased food intake predicted higher absolute gestational weight gain. Overweight and obesity, foreign nationality, increased food intake and height >170 cm were risk factors for excessive weight gain, while antenatal depression was protective against excessive weight gain. Notably, physical activity measures were not related to the gestational weight gain outcomes. Pre-pregnancy overweight and increased food intake were the strongest predictors of excessive gestational weight gain. CONCLUSIONS: None of the psychological well-being measures examined, with the exception of antenatal depression, was associated with any of the weight gain outcomes. The behavioural predictors of gestational weight gain were increased food intake and takeaway consumption. Public health promotions should target pre-pregnancy BMI and pregnancy-associated change in food intake.
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Modelos Psicológicos , Embarazo/psicología , Aumento de Peso , Adolescente , Adulto , Índice de Masa Corporal , Ingestión de Energía , Femenino , Conductas Relacionadas con la Salud , Humanos , Irlanda/epidemiología , Modelos Lineales , Comidas , Obesidad/epidemiología , Obesidad/psicología , Sobrepeso/epidemiología , Sobrepeso/psicología , Atención Prenatal/psicología , Estudios Prospectivos , Factores de Riesgo , Factores Socioeconómicos , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: Excessive weight gain during pregnancy is a major risk factor for macrosomia (high birth weight delivery). This study aimed to explore views about weight gain and lifestyle practices during pregnancy among women with a history of macrosomia. METHODS: A qualitative descriptive study was conducted. Twenty-one second-time mothers whose first infant was macrosomic (>4 kg) were recruited from a randomised trial in a large maternity hospital in the Republic of Ireland. Semi-structured interviews were conducted with participants at both 6 and 12 months after their second pregnancy. Inductive thematic analysis was used to identify distinct themes. RESULTS: The mothers believed in following their prenatal food cravings to meet their baby's needs, but this led some to eat excessively. Many of the women cut back heavily on physical activity during pregnancy due to perceived risks to the baby. Physical conditions and discomforts during pregnancy often limited maternal control over weight and lifestyle practices. The women were not particularly concerned about weight gain during pregnancy and most did not favour the notion of introducing weight gain guidelines into routine antenatal care. Common differences perceived by the women between their first and second pregnancy included: increased concern about weight gain in their second pregnancy due to prior difficulties with postpartum weight loss and increased time demands in their second pregnancy impeded healthy lifestyle practices. Most women did not alter their perspectives on weight gain and lifestyle practices in their second pregnancy in response to having a macrosomic infant in their first pregnancy. CONCLUSIONS: This analysis exposed numerous barriers to healthy pregnancy weight gain. The findings suggest that women may need to be advised to follow their prenatal food cravings in moderation. Pregnant women with children already may benefit from education on time-efficient methods of integrating healthy eating practices and physical activity into their lifestyles. Women with a history of macrosomia may need information about the importance of avoiding high weight gain in subsequent pregnancies.