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Feeding modifications and additional primary caregiver support for infants exposed to Zika virus or diagnosed with congenital Zika syndrome: a rapid review of the evidence.
Martinez, SS, Pardo-Hernandez, H, Palacios, C
Tropical medicine & international health : TM & IH. 2020;(11):1353-1361
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OBJECTIVE Infants exposed to Zika virus (ZIKV) or diagnosed with congenital Zika syndrome (CZVS) may present dysphagia, regurgitation and other feeding difficulties. They may require special feeding practices to minimise the risk of mortality, morbidity and developmental problems. Improving knowledge, skills and behaviours of caregivers may preserve health, maximise development and promote quality of life among affected infants. We reviewed intervention studies of modified feeding practices and additional primary caregiver support to improve outcomes among infants 0 to 12 months of age exposed to ZIKV or diagnosed with CZVS. METHODS Rapid review and meta-analysis. We searched PubMed/MEDLINE and contacted experts. The search is current to 18 July 2020. We planned a meta-analysis using fixed-effect models; if unfeasible, we intended to summarise studies narratively. We planned to assess risk of bias of included studies and quality of evidence using Cochrane guidance. RESULTS We identified 42 records for title and abstract screening; 14 were eligible for full-text assessment. Among these, no intervention studies were found. Eight observational studies reported on the nutritional status, feeding practices and outcomes among infants affected by ZIKV or diagnosed with CZVS. They are presented and discussed to provide a basis for future research. CONCLUSIONS While no intervention studies were found, evidence from eight observational studies highlights the need for early nutrition interventions and caregiver support among infants affected by ZIKV or diagnosed with CZSV. More research is needed to assess whether modifications of feeding practices and provision of additional primary caregiver support will impact outcomes of interest.
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Language nutrition for language health in children with disorders: a scoping review.
Bang, JY, Adiao, AS, Marchman, VA, Feldman, HM
Pediatric research. 2020;(2):300-308
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The quantity and quality of child-directed speech-language nutrition-provided to typically-developing children is associated with language outcomes-language health. Limited information is available about child-directed speech to children at biological risk of language impairments. We conducted a scoping review on caregiver child-directed speech for children with three clinical conditions associated with language impairments-preterm birth, intellectual disability, and autism-addressing three questions: (1) How does child-directed speech to these children differ from speech to typically-developing children? (2) What are the associations between child-directed speech and child language outcomes? (3) How convincing are intervention studies that aim to improve child-directed speech and thereby facilitate children's language development? We identified 635 potential studies and reviewed 57 meeting study criteria. Child-directed speech to children with all conditions was comparable to speech to language-matched children; caregivers were more directive toward children with disorders. Most associations between child-directed speech and outcomes were positive. However, several interventions had minimal effects on child language. Trials with large samples, intensive interventions, and multiple data sources are needed to evaluate child-directed speech as a means to prevent language impairment. Clinicians should counsel caregivers to use high quality child-directed speech and responsive communication styles with children with these conditions.
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Child, Caregiver, Family, and Social-Contextual Factors to Consider when Implementing Parent-Focused Child Feeding Interventions.
Miller, AL, Miller, SE, Clark, KM
Current nutrition reports. 2018;(4):303-309
Abstract
PURPOSE OF REVIEW Interventions that aim to alter child eating behaviors often focus on parents as a proximal influence. Yet, parents can be difficult to engage. Therefore, intervention recommendations are often not implemented as designed. The goal of this review is to highlight factors at multiple contextual levels that are important to consider when developing interventions to address child eating, due to their implications for overcoming parent engagement challenges. RECENT FINDINGS Intervention studies suggest that parents are often the key to successfully changing child eating behaviors, and many interventions focus on feeding. Factors such as child eating phenotypes, parent stress, family system dynamics, and sociodemographic constraints have also been identified as shaping food parenting. Challenges at multiple contextual levels can affect the likelihood of parent engagement. Addressing factors at the child-, parent-, family-, and broader social-contextual levels of influence is essential in order to promote best practices for parent-focused feeding interventions.
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Functional gastrointestinal disorders in newborns: nutritional perspectives.
Bellù, R, Condò, M
La Pediatria medica e chirurgica : Medical and surgical pediatrics. 2018;(1)
Abstract
Functional gastrointestinal disorders (FGIDs) definition in children has changed over the years trying to facilitate clinicians, because the diagnostic process is complicated by the interpretation variability of symptoms described by children or by their caregivers for newborns and toddlers. This review refers to the Rome IV classification system, drafted in 2016. FGIDs pathophysiology is multifactorial and still poor understood, with limitations for the therapeutic process, which results often in unnecessary and alternative treatments trying to reduce the relevant caregiver distress, but with increased costs for families and for the National Health Service. This study reports the most recent evidence-based treatments for FGIDs in newborns: though in most cases the first action is an educational and behavioral intervention, reassuring caregivers about the transient and self-limiting natural history of FGIDs, there is now more evidence to recommend probiotics in some infant FGIDs.
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Identifying Information Needs for Hirschsprung Disease Through Caregiver Involvement via Social Media: A Prioritization Study and Literature Review.
Wittmeier, KD, Hobbs-Murison, K, Holland, C, Crawford, E, Loewen, H, Morris, M, Lum Min, S, Abou-Setta, A, Keijzer, R
Journal of medical Internet research. 2018;(12):e297
Abstract
BACKGROUND Patient and public involvement in health research is important to produce relevant and impactful results. OBJECTIVE This paper aimed to prioritize and summarize Hirschsprung disease (HD)-related information needs among caregivers of children with HD and pediatric surgeons through partnership with a parent-initiated social media campaign. METHODS We conducted a Web-based survey with the 2 stakeholder groups to identify information needs. The caregiver survey was conducted through a global Web-based community, and the surgeon survey was distributed to members of the Canadian Association of Paediatric Surgeons (CAPS). We conducted a literature review to identify evidence on the prioritized topics. RESULTS Our findings showed that 54.9% (89/162) of the individuals completed the caregiver survey and 23.8% (52/218 listed members) of the pediatric surgeons completed the survey distributed through CAPS. Only 20% (18/89) of the caregivers reported being very satisfied or satisfied with the current HD-related resources. A final prioritized list of information needs included bowel management, nutrition and growth, infection, perianal irritation, gastrointestinal pain, surgical diagnostics, and surgical complications. In total, 87 studies were included in the literature review, which included the following: 8 reviews, 2 randomized controlled trials, 74 cohort studies, and 3 practice guidelines. Two priority issues identified by caregivers had only a single study that met the inclusion criteria, whereas 1 topic had none. CONCLUSIONS With caregiver and surgeon input, we identified 7 information priority areas related to HD. A review of the literature on the priorities found little evidence to support the development of high-quality guidelines. More research is necessary to meet the information needs related to HD as identified by stakeholders.
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The Perceptions of Important Elements of Caregiving for a Left Ventricular Assist Device Patient: A Qualitative Meta-Synthesis.
Magid, M, Jones, J, Allen, LA, McIlvennan, CK, Magid, K, Thompson, JS, Matlock, DD
The Journal of cardiovascular nursing. 2016;(3):215-25
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BACKGROUND The use of a left ventricular assist device (LVAD) is becoming increasingly common in patients with end-stage heart failure. Many LVAD programs require patients to have a caregiver before receiving a device. There are few studies exploring the experience, burden, and impacts on caregivers of patients with LVADs. OBJECTIVES The aim of this study was to synthesize the qualitative literature regarding caregiver's perceptions about caring for an adult LVAD patient. METHODS We searched MEDLINE, CINAHL, PsychInfo, and Web of Science to find English articles on the topic of LVAD caregiver's perceptions. The articles were then synthesized using a formal process of qualitative meta-synthesis. RESULTS Eight articles met criteria for inclusion. The meta-synthesis across the articles resulted in 8 themes categorized under 3 domains. Many of the articles suggested a longitudinal process of caregiving with perceptions largely dependent upon the time of interview in relation to the LVAD. The first domain of caregiving is the "early" stage, covering the life before the LVAD through the procedure. This phase is characterized by the pre-LVAD "emotional rollercoaster," the decision seen as "no option," and the thought of "leave it [the LVAD] at the hospital." The second domain is the "middle" stage, covering the time frame after discharge from the hospital. This phase is characterized by fragility of the patient, recognition of a need to adapt, and a transformed life. The final domain is "late LVAD" and describes how late in the LVAD process the LVAD indication (bridge to transplant or destination therapy) brings in to focus what is important to caregivers. CONCLUSIONS Existing literature indicates that the LVAD caregiver experience is intense as well as burdensome and entails the need to adapt to a new life. Given the burdens caregivers experience, clinicians and future research should explore strategies to support these important individuals.
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Informal caregiving and its impact on health: a reappraisal from population-based studies.
Roth, DL, Fredman, L, Haley, WE
The Gerontologist. 2015;(2):309-19
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Considerable research and public discourse on family caregiving portrays it as a stressful and burdensome experience with serious negative health consequences. A landmark study by Schulz and Beach that reported higher mortality rates for strained spouse caregivers has been widely cited as evidence for the physical health risks of caregiving and is often a centerpiece of advocacy for improved caregiver services. However, 5 subsequent population-based studies have found reduced mortality and extended longevity for caregivers as a whole compared with noncaregiving controls. Most caregivers also report benefits from caregiving, and many report little or no caregiving-related strain. Policy reports, media portrayals, and many research reports commonly present an overly dire picture of the health risks associated with caregiving and largely ignore alternative positive findings. As the pool of traditional family caregivers declines in the coming years, a more balanced and updated portrayal of the health effects of caregiving is needed to encourage more persons to take on caregiving roles, and to better target evidence-based services to the subgroup of caregivers who are highly strained or otherwise at risk. Recommendations are discussed for research that will better integrate and clarify both the negative and potential positive health effects of informal caregiving.
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Psychological interventions for individuals with cystic fibrosis and their families.
Goldbeck, L, Fidika, A, Herle, M, Quittner, AL
The Cochrane database of systematic reviews. 2014;(6):CD003148
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BACKGROUND With increasing survival estimates for individuals with cystic fibrosis, long-term management has become an important focus. Psychological interventions are largely concerned with adherence to treatment, emotional and social adaptation and health-related quality of life. We are unaware of any relevant systematic reviews. OBJECTIVES To determine whether psychological interventions for people with cystic fibrosis provide significant psychosocial and physical benefits in addition to standard medical care. SEARCH METHODS Studies were identified from two Cochrane trials registers (Cystic Fibrosis and Genetic Disorders Group; Depression, Anxiety and Neurosis Group), Ovid MEDLINE and PsychINFO; unpublished trials were located through professional networks and Listserves. Most recent search of the Cystic Fibrosis and Genetic Disorders Group's register: 19 December 2013.Most recent search of the Depression, Anxiety and Neurosis Group's register: 12 November 2013. SELECTION CRITERIA Randomised controlled studies of a broad range of psychological interventions evaluating subjective and objective health outcomes, such as quality of life or pulmonary function, in individuals of all ages with cystic fibrosis and their immediate family. We were interested in psychological interventions, including psychological methods within the scope of psychotherapeutic or psychosomatic mechanism of action (e.g. cognitive behavioural, cognitive, family systems or systemic, psycho-dynamic, or other, e.g. supportive, relaxation, or biofeedback), which were aimed at improving psychological and psychosocial outcomes (e.g. quality of life, levels of stress or distress, psychopathology, etc.), adaptation to disease management and physiological outcomes. DATA COLLECTION AND ANALYSIS Three authors were involved in selecting the eligible studies and two of these authors assessed their risk of bias. MAIN RESULTS The review includes 16 studies (eight new studies included in this update) representing data from 556 participants. Studies are diverse in their design and their methods. They cover interventions with generic approaches, as well as interventions developed specifically to target disease-specific symptoms and problems in people with cystic fibrosis. These include cognitive behavioural interventions to improve adherence to nutrition or psychosocial adjustment, cognitive interventions to improve adherence or those associated with decision making in lung transplantation, a community-based support intervention and other interventions, such as self-hypnosis, respiratory muscle biofeedback, music therapy, dance and movement therapy, and a tele-medicine intervention to support patients awaiting transplantation.A substantial proportion of outcomes relate to adherence, changes in physical status or other specific treatment concerns during the chronic phase of the disease.There is some evidence that behavioural interventions targeting nutrition and growth in children (4 to 12 years) with cystic fibrosis are effective in the short term. Evidence was found that providing a structured decision-making tool for patients considering lung transplantation improves patients' knowledge of and expectations about the transplant, and reduces decisional conflict in the short term. One study about training in biofeedback-assisted breathing demonstrated some evidence that it improved some lung function measurements. Currently there is insufficient evidence for interventions aimed at other aspects of the disease process. AUTHORS' CONCLUSIONS Currently, insufficient evidence exists on psychological interventions or approaches to support people with cystic fibrosis and their caregivers, although some of the studies were promising. Due to the heterogeneity between studies, more of each type of intervention are needed to support preliminary evidence. Multicentre studies, with consequent funding implications, are needed to increase the sample size of these studies and enhance the statistical power and precision to detect important findings. In addition, multicentre studies could improve the generalisation of results by minimizing centre or therapist effects. Psychological interventions should be targeted to illness-specific symptoms or behaviours to demonstrate efficacy.
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The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies.
Morton, RL, Tong, A, Howard, K, Snelling, P, Webster, AC
BMJ (Clinical research ed.). 2010;:c112
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OBJECTIVE To synthesise the views of patients and carers in decision making regarding treatment for chronic kidney disease, and to determine which factors influence those decisions. DESIGN Systematic review of qualitative studies of decision making and choice for dialysis, transplantation, or palliative care, and thematic synthesis of qualitative studies. DATA SOURCES Medline, PsycINFO, CINAHL, Embase, social work abstracts, and digital theses (database inception to week 3 October 2008) to identify literature using qualitative methods (focus groups, interviews, or case studies). Review methods Thematic synthesis involved line by line coding of the findings of the primary studies and development of descriptive and analytical themes. RESULTS 18 studies that reported the experiences of 375 patients and 87 carers were included. 14 studies focused on preferences for dialysis modality, three on transplantation, and one on palliative management. Four major themes were identified as being central to treatment choices: confronting mortality (choosing life or death, being a burden, living in limbo), lack of choice (medical decision, lack of information, constraints on resources), gaining knowledge of options (peer influence, timing of information), and weighing alternatives (maintaining lifestyle, family influences, maintaining the status quo). CONCLUSIONS The experiences of other patients greatly influenced the decision making of patients and carers. The problematic timing of information about treatment options and synchronous creation of vascular access seemed to predetermine haemodialysis and inhibit choice of other treatments, including palliative care. A preference to maintain the status quo may explain why patients often remain on their initial therapy.
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Addressing malnutrition in young children in South Africa. Setting the national context for paediatric food-based dietary guidelines.
Bourne, LT, Hendricks, MK, Marais, D, Eley, B
Maternal & child nutrition. 2007;(4):230-8
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Despite various national nutrition and primary healthcare programmes being initiated in South Africa over the last decade, child health has deteriorated. This is seen by the rise in infant and child mortality rates, the high prevalence of preventable childhood diseases, e.g. diarrhoea and lower respiratory tract infections, and the coexistence of under-nutrition along with HIV/AIDS. Poor dietary intake, food insecurity and poor quality of basic services prevail within this precarious causal web. The national Integrated Nutrition Programme is a comprehensive nutrition strategy that focuses on children below 6 years old, at-risk pregnant and lactating women, and those affected by communicable and non-communicable diseases. Focus areas relevant to pre-school children include disease-specific nutrition treatment, support and counselling; growth monitoring and promotion (GMP); micronutrient malnutrition control; breastfeeding promotion, protection and support; contributions to household food security; nutrition interventions among HIV-infected children; and nutrition promotion, education and advocacy. Progress towards this includes the Baby-Friendly Hospital Initiative; mandatory fortification of maize meal and wheat flour with multiple micronutrients; vitamin A supplementation coverage and mandatory iodization of salt by legislation; the provision of free road-to-health charts for GMP; and the National School Nutrition Programme. Since 2003, the basis of the nutrition education strategy has been the locally developed food-based dietary guidelines (FBDGs), directed at adults and school-going children. This review sketches the backdrop to and motivation for the introduction of specifically targeted paediatric FBDGs, for mothers and caregivers of children from birth to age 7 years, as a national initiative.