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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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Abstract
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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Abstract
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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Valued activities and informal caregiving in stroke: a scoping review.
Jellema, S, Wijnen, MAM, Steultjens, EMJ, Nijhuis-van der Sanden, MWG, van der Sande, R
Disability and rehabilitation. 2019;(18):2223-2234
Abstract
Purpose: Map the literature about valued activities and informal caregiving post stroke and determine the nature, extent, and consequences of caregivers' activity changes. Methods: A scoping review was undertaken, searching Pubmed, Cinahl, PsycInfo, and Google Scholar. Two researchers independently identified relevant articles, extracted study characteristics and findings, and assigned codes describing the topics and outcomes. Using thematic analysis, the main study topics and study outcomes were described. Results: The search yielded 662 studies, 30 of which were included. These were mainly qualitative and cross-sectional studies assessing caregivers' activity changes and related factors, or exploring caregivers' feelings, needs and strategies to deal with their activity challenges. Although caregivers often lost their social and leisure activities, which made them feel unhappy and socially isolated, we found no studies about professional interventions to help caregivers maintain their activities. Over the years, caregivers' activity levels generally increased. However, some caregivers suffered from sustained activity loss, which, in turn, relates to depression. Conclusion: Loss of valued activities is common for stroke caregivers. Although high-level evidence is lacking, our results suggest that sustained activity loss can cause stroke caregivers to experience poor mental health and wellbeing. Suggestions to help caregivers maintain their valued activities are presented. Implications for rehabilitation Not only stroke survivors but also their informal caregivers tend to lose their valued activities, such as their social and leisure activities. Although many caregivers manage to resume their valued activities over time, others suffer from sustained activity loss up to at least two years post stroke. Loss of valued activities in stroke caregivers can result in lower levels of wellbeing, depression, and social isolation. Rehabilitation professionals should screen stroke caregivers for activity loss and assist them in resuming their valued activities and maintaining their social contacts.
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Enhancing the decision-making process when considering artificial nutrition in advanced dementia care.
De, D, Thomas, C
International journal of palliative nursing. 2019;(5):216-223
Abstract
BACKGROUND Nutritional problems often manifest during late-stage dementia, and some families may request to instigate artificial nutrition and hydration (ANH) therapies. In the US, an estimated one-third of nursing home patients with a severe cognitive impairment have artificial feeding tubes inserted. Fear that a relative could experience extreme hunger or thirst if they are not mechanically fed tends to be the main driver behind family's requests to implement artificial or enteral feeding methods. In contrast, artificial hydration is rarely given to older people with dementia in the UK and this practice of non-intervention tends to apply across all healthcare and hospice type environments. AIM: This literature review aims to evaluate the evidence to support the use and non-use of ANH. METHOD A literature review was undertaken to examine the evidence around ANH for patients with dementia to offer support to families or carers contemplating feeding choices. CONCLUSION This paper challenges the implementation of invasive ANH worldwide. It highlights how resorting to ANH does not necessarily lead to improvements in comfort, survival or wound healing. The risk of aspiration does not appear to significantly alter either.
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Life experiences of caregivers of women with gynaecological cancer: a mixed-methods systematic review.
Teskereci, G, Kulakaç, O
European journal of cancer care. 2018;(1)
Abstract
Family caregivers play a key role in meeting care needs of cancer patients. The aim of this review was to systematically examine life experiences of family caregivers of women with gynaecological cancer. A mixed-methods systematic review based on a retrospective review of the research on the topic was conducted. The review was limited to articles in English published between 1985 and 2014. The literature search was performed in CINAHL, Scopus, PubMed and ScienceDirect. A total of 16 full-text articles published in national and international journals were reviewed: 10 quantitative studies, 5 qualitative studies and 1 both qualitative and quantitative study. Of all caregivers with gynaecological cancer, 59% were partners, 27% were sons or daughters and 14% were brothers or sisters, mothers and friends. The qualitative research on caregivers' experiences revealed three themes: 'emotional devastation', 'change' and 'coping'. The family caregivers of women with gynaecological cancer had difficulty in areas examined, but the studies investigating caregivers' needs were limited to certain subjects and they were not solution-oriented. It is recommended that qualitative and quantitative studies including the solutions regarding family caregivers of women with gynaecological cancer should be integrated.
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A Systematic Review of Patient and Caregiver Experiences with a Tracheostomy.
Nakarada-Kordic, I, Patterson, N, Wrapson, J, Reay, SD
The patient. 2018;(2):175-191
Abstract
BACKGROUND A tracheostomy is a surgically created opening through the anterior neck tissues and the trachea, into which a tube is inserted. Despite its influence on basic human needs such as respiration, communication and nutrition, little is known about the impact of tracheostomy on patients and their caregivers or what could be done to enable better care and quality of life (QoL) for these individuals. OBJECTIVE The aim of this review was to better understand the current knowledge related to the experience and QoL of adults living with a tracheostomy and their caregivers so as to be able to improve these experiences. METHOD A systematic review of the English-language, peer-reviewed literature was conducted in PubMed, Scopus, PsychINFO, Google Scholar, and CINAHL databases. Articles were eligible if they included adult patient or lay caregiver-reported experiences of tracheostomy. RESULTS Overall, 1080 articles were identified and 17 eligible for inclusion. Fourteen articles reported on experiences of tracheostomy patients, while three focused on those of their caregivers. Studies were conducted in the home setting (n = 5), on a hospital ward (n = 4), in an intensive care unit (n = 3), in an outpatient clinic (n = 3), in a rehab facility (n = 1), and online (n = 1). Patients and their caregivers reported a range of mostly negative experiences related to the care, support, and management of a tracheostomy, speech and communication, wellbeing and QoL, disfigurement and body image, and stigma and social withdrawal. CONCLUSION Few studies have published data on the patient and caregiver experiences with tracheostomy, especially in the community setting. There is a need to better understand these experiences in order to be able to formulate strategies and provide resources to improve the quality of care and overall QoL of patients with a tracheostomy and their caregivers in-hospital and in the community.
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Informal caregivers' experiences of caring for people receiving dialysis: A mixed-methods systematic review.
Hoang, VL, Green, T, Bonner, A
Journal of renal care. 2018;(2):82-95
Abstract
BACKGROUND Living with end stage kidney disease and having dialysis is burdensome, and there is a need for support from informal caregivers (i.e. family members and friends). Renal health professionals readily acknowledge and value the support provided by caregivers although the activities and experiences of caring for a loved-one who is receiving dialysis is less well understood. OBJECTIVES To review studies about the perspectives and experiences of family members and friends who provide support for adults receiving either haemodialysis or peritoneal dialysis. METHODS A mixed-methods systematic review was conducted. Eight databases (Medline, CINAHL, EMBASE, PsycINFO, Proquest, Web of Science, Cochrane Library and JBI library) were comprehensively searched using relevant key words for studies regardless of design published in English from January 2006 to July 2017. RESULTS Twenty studies were included in this review. Informal caregivers undertake many everyday activities as well as a range of dialysis-specific activities, report an elevated level of burden, feel overwhelmed, experience social isolation, and also need to consider their own health. A unique finding was that caregivers also experienced personal growth that may defuse the impact of caregiving burden and to help them develop a sense of resilience to sustain the support through the tough times and for many years. CONCLUSION This review substantiates that caregiver burden is due to the unrelenting nature of complex dialysis-specific activities although resilience often develops. Additional research is necessary to understand social support in this context and how health teams can assist caregivers further.
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Blended diets for gastrostomy fed children and young people: a scoping review.
Breaks, A, Smith, C, Bloch, S, Morgan, S
Journal of human nutrition and dietetics : the official journal of the British Dietetic Association. 2018;(5):634-646
Abstract
BACKGROUND The present review aimed to identify what is known about the use of blended diets in gastrostomy fed children and young people (i.e. children and young people refers to those who are aged up to 25 years with special educational needs or a disability in accordance with Part 3 of the Children and Family Act 2014; within the review, the word children is used for simplicity but encompasses young people too) and to identify gaps in the literature on this topic to inform future research and policy. METHODS A scoping review methodology was used searching the online databases PUBMED, PsychINFO, CINAHL, SCOPUS and AMED, EMBASE for articles that addressed issues pertaining to blended diets. The review identified a broad range of literature, regardless of study design, and described and evaluated the quality, range and nature of research activity related to the use of blenderised diets. RESULTS Forty-three studies were included in the review. The studies focused on nutrition, equipment, the views of carers and patients, and the views of professionals. Several studies described the lack of evidence regarding pros and cons of blended diets and highlighted the need for further research into the field. CONCLUSIONS There were gaps in the evidence base regarding the impact of blended diets on the health and well-being of the children who receive them and upon the carers who feed the children. The nutritional impact of blended diets is not fully understood and the knowledge and views of professionals involved in the care of those receiving blended diets varies.
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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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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.