Dataset Information

Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review.

ABSTRACT: In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS) and their caregivers. The literature search was conducted across 10 academic databases, adhering to PRISMA-P guidelines. Quality appraisal was conducted using the mixed method appraisal test for individual studies, and GRADE-CERQual to establish overall confidence of findings. Results were analyzed using a process of narrative synthesis. We identified 26 studies which included 2253 children/adolescents with MS (CAMS) and 1608 caregivers. MS was reported to negatively impact experiences for CAMS in domains such as of school performance, social relationships, mental health, and overall physical functioning. Specifically, fatigue and social support were reported as the most important barriers and facilitators for CAMS, respectively. In terms of caregiver experience, negative impacts were reported on social functioning, mental health, and quality of life. Additionally, lack of awareness concerning MS was one of the biggest challenges reported. Caregivers expressed needs for psychological and social support. This study provides the first evidence regarding the needs and experiences of CAMS and their caregivers. Findings can be used to address policy gaps for supporting families affected by pediatric MS.

SUBMITTER: Ghai S

PROVIDER: S-EPMC8226634 | biostudies-literature | 2021 May

REPOSITORIES: biostudies-literature

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Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review.

Ghai Shashank S Ghai Shashank S Kasilingam Elisabeth E Lanzillo Roberta R Malenica Masa M van Pesch Vincent V Burke Niamh Caitlin NC Carotenuto Antonio A Maguire Rebecca R

Children (Basel, Switzerland) 20210525 6

In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS) and their caregivers. The literature search was conducted across 10 academic databases, adhering to PRISMA-P guidelines. Quality appraisal was conducted using the mixed method appraisal test for individual studies, and GRADE-CERQual to establish overall confidence of findings. Results were analyzed using a process of narrative synthesis. We identified 26 studi ...[more]

PMID: 34070298

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Project description:BackgroundFamilies are the primary source of support and care for most children. In Western societies, 4 to 12% of children live in households where a parent has a chronic illness. Exposure to early-life stressors, including parenting stress, parental depression and parental chronic disease could lead to harmful changes in children's social, emotional or behavioural functioning. Little is known about the child living with a parent who has Multiple Sclerosis (MS). We systematically reviewed the literature regarding possible effects of having a parent with MS on the child's or adolescent's psychosocial adjustment.MethodsThe following databases: MEDLINE, PsychInfo, CINAHL, EMBASE, Web of Knowledge, ERIC, and ProQuest Digital Dissertations were searched (from 1806 to December 2012). References from relevant articles were also manually searched. Selected studies were evaluated using the Graphic Appraisal Tool for Epidemiology (GATE).ResultsThe search yielded 3133 titles; 70 articles were selected for full text review. Eighteen studies met inclusion criteria. Fourteen studies employed quantitative techniques, of which 13 were cross-sectional and one was longitudinal. Four studies were both qualitative and cross-sectional in design. Only 2 of 18 studies were rated as having high methodological quality. Overall, eight studies reported that children of MS patients exhibited negative psychosocial traits compared with children of "healthy" parents. Specifically for adolescents, greater family responsibilities were linked to lower social relationships and higher distress. Three studies indicated that parental MS was associated with positive adjustment in children and adolescents, such as higher personal competence, while four found no statistically significant differences.ConclusionAlthough having a parent with MS was often reported to have negative psychosocial effects on children and adolescents, there was a lack of consensus and some positive aspects were also found. However, few high quality studies were identified which makes it difficult to draw evidence-based conclusions at this point. There are potentially important, long-term impacts of early life stressors, such as having a parent with a chronic disease, on subsequent life chances and health, and thus more extensive and higher quality research in this area is greatly needed.

Project description:BACKGROUND:Conversion to secondary progressive multiple sclerosis (SPMS) is associated with a relatively poor prognosis, and SPMS is responsible for the majority of the social and economic costs associated with MS. Managing the Transition to SPMS (ManTra) is a mixed methods project conducted in Italy and Germany aimed to set up a user-led resource to empower and improve the quality of life of newly diagnosed SPMS patients. AIMS:To assess the experiences and the needs of Italian people who recently converted to SPMS, patient significant others (SOs), neurologists and other health professionals (HPs). METHODS:We conducted 15 personal semistructured interviews (PSIs) with SPMS patients who transitioned up to five years, and three focus group meetings (FGMs), one of SPMS SOs, one of neurologists, and one of other HPs. Participants were purposely selected from the three geographic areas of Italy, and varied in terms of gender, education and (for patients) disease severity. PSIs and FGMs were audiorecorded, transcribed and analyzed by two researchers using the framework analysis. RESULTS:One hundred sub-categories were identified, grouped into 13 categories and four themes: 'awareness of the transition', 'communication of the transition', 'dealing with symptoms worsening', and 'needs'. The major unmet needs were collected in four dimensions 'organization and management; 'empowerment training'; 'information'; and 'policies'. CONCLUSIONS:Two are the main findings: first, the widespread lack of awareness around the transition; second, the need to improve the quality of the care pathway in the Italian context. It was particularly stressed the need for a holistic and multidisciplinary approach (with patients and SOs as members of the team), the development of an ad hoc plan of follow up visits with easy access to MS specialists' consultation/treatment; specialized training for each stakeholders; more information on SPMS, daily management and changes at policy level.

Project description:Adolescents with Human Immunodeficiency Virus (HIV) are at greater risk for mental health problems than their HIV-negative counterparts. However, there is a dearth of evidence on the need for mental health services, including interventions for depression in adolescents with HIV (AWHIV), in most low- and middle-income countries (LMICs). This study's objective was to explore the unmet mental health needs of AWHIV to inform the development and implementation of a psychological intervention for depression in AWHIV in Dar es Salaam, Tanzania. A descriptive phenomenological qualitative study design was used. Consultative meetings with providers and 45 in-depth interviews were conducted with AWHIV, caregivers, and healthcare providers (HCPs) to explore their experiences and unmet mental health needs for AWHIV. Data from the consultative meetings were triangulated to validate the obtained information with those from interviews. Data were organized and managed with the aid of NVIvo-11. The thematic analysis framework guided data analysis. Five major themes emerged: Experience of complex symptoms, unmet need for services, impact of the unmet needs, ways utilized in managing symptoms, and preferred intervention. Complex depressive symptoms expressed as physical, behavioral, or somatic complaints adversely affected ART adherence and academic performance, led to substance use, and compromised overall quality of life in AWHIV. HIV-Care and Treatment Centers (HIV-CTCs) did not conduct formal mental health screenings. Instead, caregivers and HCPs addressed the symptoms of mental health problems with death threats and corporal punishments. No evidence-based depression interventions existed in HIV-CTCs for observed symptoms. This study reports on unmet mental health needs with a clear impact on the lives of AWHIV, which may have significant implications for treatment adherence. There is an urgent need to develop and implement effective and scalable interventions to address these mental health needs.

Project description:BackgroundThere exist many evidence-based interventions available to manage procedural pain in children and neonates, yet they are severely underutilized. Parents play an important role in the management of their child's pain; however, many do not possess adequate knowledge of how to effectively do so. The purpose of the planned study is to systematically review and synthesize current knowledge of the experiences and information needs of parents with regard to the management of their child's pain and distress related to medical procedures in the emergency department.MethodsWe will conduct a systematic review using rigorous methods and reporting based on the PRISMA statement. We will conduct a comprehensive search of literature published between 2000 and 2016 reporting on parents' experiences and information needs with regard to helping their child manage procedural pain and distress. Ovid MEDLINE, Ovid PsycINFO, CINAHL, and PubMed will be searched. We will also search reference lists of key studies and gray literature sources. Two reviewers will screen the articles following inclusion criteria defined a priori. One reviewer will then extract the data from each article following a data extraction form developed by the study team. The second reviewer will check the data extraction for accuracy and completeness. Any disagreements with regard to study inclusion or data extraction will be resolved via discussion. Data from qualitative studies will be summarized thematically, while those from quantitative studies will be summarized narratively. The second reviewer will confirm the overarching themes resulting from the qualitative and quantitative data syntheses. The Critical Appraisal Skills Programme Qualitative Research Checklist and the Quality Assessment Tool for Quantitative Studies will be used to assess the quality of the evidence from each included study.DiscussionTo our knowledge, no published review exists that comprehensively reports on the experiences and information needs of parents related to the management of their child's procedural pain and distress. A systematic review of parents' experiences and information needs will help to inform strategies to empower them with the knowledge necessary to ensure their child's comfort during a painful procedure.Systematic review registrationPROSPERO CRD42016043698.

Dataset Information

Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review.

Publications

Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review.

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