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BMC Pediatrics May 2020Population prevalence estimates by the World Health Organisation suggest that 1 in 160 children worldwide has an Autism Spectrum Disorder (ASD). Accessing respite care...
BACKGROUND
Population prevalence estimates by the World Health Organisation suggest that 1 in 160 children worldwide has an Autism Spectrum Disorder (ASD). Accessing respite care services for children with an ASD can often be a daunting and exhaustive process, with parents sometimes forced to access acute hospital services as an initial point of contact for respite care or in a crisis situation. To gain an in-depth understanding of accessing respite care for children with an ASD, from the perspectives of parents, a systematic review of the evidence on parent's experiences and views of respite care for children with an ASD at the acute and primary interface was undertaken.
METHODS
Pubmed, Embase, CINAHL and PsycINFO were systematically searched. Studies identified as relevant based on predetermined eligibility criteria were selected for inclusion. The search strategy also targeted unpublished studies and grey literature. Qualitative data and qualitative components of mixed method studies that represented the experiences of parents accessing respite care for children with an ASD were eligible for inclusion. A meta-aggregative approach was used during data synthesis.
RESULTS
Database searching elicited 430 records of which 291 studies remained after removal of duplicates. These 291 studies were screened for title and abstract by two reviewers resulting in 31 studies to be screened at full text and assessed for eligibility. Six studies met the inclusion criteria and a further additional study also met the inclusion criteria during a manual search. As a result, 7 studies were selected for the review as set out in Fig. 1.
CONCLUSION
In the absence of appropriate services and defined pathways to support services such as respite care, overwhelmed parents and community providers of mental health resources may not be in a position to meet the specific needs of children with an ASD and their families which may be contributing to a direct increase in hospitalizations. This systematic review identified a number of barriers to respite care, of which the findings can be used to inform future service development and further research. Knowledge of parental experiences in caring for a child with an ASD is vital in addressing the need and type of respite care required for children with an ASD.
SYSTEMATIC REVIEW REGISTRATION
PROSPERO CRD42018106629.
Topics: Autism Spectrum Disorder; Child; Humans; Mental Health; Parents; Primary Health Care; Respite Care
PubMed: 32443974
DOI: 10.1186/s12887-020-02045-5 -
Psychology and Aging Dec 2022Some reviews suggest benefits of nonpharmacological interventions for informal caregivers of people with dementia and mild cognitive impairment. These benefits may... (Meta-Analysis)
Meta-Analysis
Some reviews suggest benefits of nonpharmacological interventions for informal caregivers of people with dementia and mild cognitive impairment. These benefits may transfer to the care-recipients (CRs) through increased caregiving capability, reduced burden and depression among caregivers, and decreased negative mood contagion. However, large-scale review on these effects on the CRs is lacking. We searched PsycINFO, CINAHL with Full Text, MEDLINE, and PubMed from inception to end of 2020 and found 142 articles that reported randomized controlled trials (RCTs) of caregiver interventions using CR outcomes. Interventions were found to reduce neuropsychiatric symptoms (NPS) in general and behavioral and mood disturbance specifically, enhance cognition and quality of life, and delay institutionalization and mortality, with care coordination/case management, educational intervention with psychotherapeutic components (psychoeducation-b), and direct training of the CR (with caregiver involvement) being the more potent interventions. The kinds of benefit depend on the types of intervention. NPS was reduced by psychoeducation-b, care coordination/case management, and CR training. Cognition and quality of life were enhanced by CR training and care coordination/case management, respectively. Institutionalization was delayed by multicomponent interventions and respite (based on one study). However, the effects were generally small to very small. Together with existing findings on caregiver outcomes, a tripartite scaffolding model of caregiver support is proposed. The model is composed of three components: (a) care coordination/case management (i.e., enhanced usual care), (b) psychoeducation-b, and (c) CR training. Future directions in terms of developing consensual guidelines, a registry of intervention manuals, and family-centered programs with flexibility in delivery are discussed. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
Topics: Humans; Caregivers; Dementia; Aging; Cognitive Dysfunction; Quality of Life
PubMed: 35771500
DOI: 10.1037/pag0000696 -
The Gerontologist Nov 2020Caring for a person with dementia places a significant burden upon informal caregivers and leads to decreased psychological and physical health, which is why dementia... (Meta-Analysis)
Meta-Analysis
BACKGROUND AND OBJECTIVES
Caring for a person with dementia places a significant burden upon informal caregivers and leads to decreased psychological and physical health, which is why dementia caregiver interventions have been developed. However, empirical evidence for the efficacy of those interventions is inconclusive and the last comprehensive meta-analysis (Pinquart & Sörensen. Helping caregivers of persons with dementia: Which interventions work and how large are their effects? International Psychogeriatrics. 2006;18(4), 577-595.) was published more than 10 years ago.
RESEARCH DESIGN AND METHOD
This meta-analysis aims to update the meta-analysis conducted by Pinquart and Sörensen. Based on a systematic search in electronic data bases, effects of 282 controlled studies were integrated. The effectiveness of different intervention types and influences of study characteristics were evaluated.
RESULTS
Interventions had, on average, a significant, small-to-moderate effect on the improvement of ability/knowledge, subjective well-being, burden, depression, and the caregiver's anxiety as well as symptoms of the care recipient. No mean effect was found in regard to reducing the risk of institutionalization. Most intervention types had an effect on the reduction of burden as well as on other outcomes. Psychoeducation and multicomponent interventions affected most outcomes, whereas the efficacy of other intervention types was domain-specific.
DISCUSSION AND IMPLICATIONS
There is evidence for the efficacy of dementia caregiver interventions, though due to having predominantly small effect sizes, there is still room for improvement. Interventions should be tailored to the desired outcome. More research on long-term effects, effects on anxiety and institutionalization, efficacy of respite and support interventions, care recipient training, and the intervention process is needed.
Topics: Anxiety; Caregivers; Dementia; Humans; Institutionalization; Quality of Life
PubMed: 33226434
DOI: 10.1093/geront/gnz118 -
Patient Education and Counseling Dec 2021Upsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed... (Review)
Review
INTRODUCTION
Upsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia.
METHODS
PRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies.
RESULTS
The review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance.
CONCLUSION
Optimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment.
PRACTICAL IMPLICATIONS
A paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted.
Topics: Adaptation, Psychological; Aged; Caregiver Burden; Caregivers; Chronic Disease; Cost of Illness; Humans; Male; Social Support
PubMed: 33958255
DOI: 10.1016/j.pec.2021.04.021 -
JBI Evidence Synthesis Apr 2020The objective of this review was to synthesize evidence on the experiences and perceptions of spousal/partner caregivers of community-dwelling adults with dementia.
OBJECTIVE
The objective of this review was to synthesize evidence on the experiences and perceptions of spousal/partner caregivers of community-dwelling adults with dementia.
INTRODUCTION
Currently 47 million people in the world have a diagnosis of dementia, and this number is predicted to climb to 75 million by 2030. The majority of care is provided by family members, particularly spouses/partners. Quantitative systematic reviews of spouse/partner caregivers demonstrate negative health effects for these caregivers. This review synthesized the qualitative evidence on the experiences of spousal/partner caregivers of people with dementia to further understanding how this care and the context of care contribute to the health and well-being of spousal/partner caregivers.
INCLUSION CRITERIA
This review considered qualitative studies that explored the experiences of spousal/partner caregivers providing care for adults with dementia. The focus was on qualitative designs including, but not limited to, phenomenology, grounded theory, ethnography, action research, critical research and feminist research.
METHODS
The search strategy used a three-step approach and was aimed at locating both published and unpublished studies. Key databases included MEDLINE, CINAHL, Embase, PsycINFO, Sociological Abstracts, ISI Web of Science, and Dissertation Abstracts International. Gray literature was searched using keywords from the database searches. The databases were searched from inception to February 2017, and a mix of controlled vocabulary (i.e. MeSH, CINAHL headings) and keywords were used to capture all existing qualitative studies related to the experiences and perceptions of spousal/partner caregivers providing unpaid care for adults with dementia. During the title and abstract screening, only English and French articles were included. The recommended JBI approach to study selection, critical appraisal, data extraction and data synthesis was used. Seven of the 10 critical appraisal criteria were deemed essential, with exceptions identified for criteria 1, 6 and 7.
RESULTS
Nineteen studies were included in the review. Study designs included phenomenology (eight), grounded theory (five), qualitative description (four), ethnography (one) and narrative inquiry (one). The total number of participants was 248 (164 women and 84 men). The overall quality of the studies was rated as moderate on the ConQual score, with dependability rated as moderate and credibility rated as high. One hundred and fifty-five findings were aggregated into four categories and two synthesized findings. The two synthesized findings were "the expectation to care in the midst of uncertainty and unpredictability" and "the caregiver as hostage".
CONCLUSIONS
This review provides a comprehensive understanding that can inform spousal/partner caregiver policies and programs. Evidence is required on the experiences and perceptions of caregivers across the gender continuum. Interventions and interventional research that mobilizes the evidence to date is essential for the future of caregivers. The limitations to this review include the possibility of missed studies, all study participants being in heterosexual relationships, and the majority of participants being Caucasian. Recommendations for practice, policy and research include the need for awareness of the extent of change in the lives of the person with dementia and the spousal/partner caregiver, the importance of support and respite, the need to tangibly recognize the value of the unpaid caregiver in a way that preserves the health and well-being of this group, and research is required that is culturally sensitive and reflects the experiences of the lesbian, gay, bisexual, transgender, transsexual, queer, questioning, intersex, asexual, ally, pansexual populations.
Topics: Adult; Aged; Caregivers; Dementia; Female; Humans; Independent Living; Male; Middle Aged; Perception; Qualitative Research; Spouses
PubMed: 32813338
DOI: 10.11124/JBISRIR-2017-003774 -
BMC Palliative Care Oct 2020The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in...
BACKGROUND
The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in the child's home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home.
METHODS
We conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0-18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies.
RESULTS
The review represents the experiences of the families of almost 300 children with life-limiting (LL) and life-threatening (LT) conditions receiving palliative care at home. In general, the children's mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted.
CONCLUSIONS
Families receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings.
Topics: Adaptation, Psychological; Adolescent; Child; Child, Preschool; Family; Female; Home Care Services; Humans; Infant; Male; Palliative Care; Pediatrics; Social Support
PubMed: 33099303
DOI: 10.1186/s12904-020-00672-4 -
Disability and Rehabilitation.... Jul 2022Explore methods used in peer-reviewed literature for obtaining self-expression of well-being information from children with severe motor and communication impairment...
PURPOSE
Explore methods used in peer-reviewed literature for obtaining self-expression of well-being information from children with severe motor and communication impairment (SMCI).
MATERIALS AND METHODS
A comprehensive search was conducted on 22 August 2019 through academic databases: CINAHL; Embase; MEDLINE; PsycINFO; InSpec; Compendex. Search strategies were informed by keywords under the following areas: (1) population: children with SMCI, (2) assessment methods: alternative to natural speech, paper and pencil report or standardized keyboard use (e.g., eye gaze) and (3) target information: well-being (e.g., quality of life). Studies were excluded if they focused on individuals over 25-years old, exclusively autism or typically developing children.
RESULTS
Non-duplicate studies of 10,986 were screened; 49 studies met inclusion criteria. Most studies used high-tech methods of self-expression in a single context ( = 17). Familiar partners play a significant role in self-expression; 18 studies required a familiar partner for children with SMCI to self-express. Thirty-five studies involved children self-expressing to solely adults, in comparison to 14 studies which involved peers.
CONCLUSION
Findings highlight the advancement of high-tech communication devices restricted to application in single contexts. Familiar partner knowledge of children with SMCI has the potential to be shared with others (e.g., respite care providers), enhancing both caregiver and child well-being. Future research that would enhance the literature could explore the assessment of emotional well-being for application in various contexts using multimodal methods. Opportunities for children with SMCI to express their emotional well-being can further influence the understanding and enhancement of participation, social connections, and experiences.IMPLICATIONS FOR REHABILITATIONUse of lower tech methods of self-expression to obtain information directly from children with severe motor and communication impairment (SMCI) remain more feasible in home and school contexts.By utilizing familiar partners' experiences and knowledge of the child, respite care providers, novel support workers, and others involved in the lives of children with SMCI can become further informed.Current high-tech methods for obtaining the emotional expressions of children with SMCI may benefit from incorporating multimodal approaches including lower tech methods, to be feasibly applied in real world contexts where well-being takes place.Further research on this topic is imperative to enable children with SMCI to self-express their emotional well-being which can enhance participation, activities, social connections, and experiences.
Topics: Adult; Child; Communication; Communication Disorders; Emotions; Family; Humans; Quality of Life
PubMed: 32878502
DOI: 10.1080/17483107.2020.1810334 -
Medicine Dec 2022Lymphangioleiomyomatosis (LAM) is a rare disease involving multiple systems, which is divided into sporadic LAM (S-LAM) and tuberous sclerosis complex-LAM, mostly...
BACKGROUND
Lymphangioleiomyomatosis (LAM) is a rare disease involving multiple systems, which is divided into sporadic LAM (S-LAM) and tuberous sclerosis complex-LAM, mostly affecting women who are in childbearing age stage. Data on male patients are limited and scattered. Therefore, it is necessary to conduct a systematic review to investigate the clinical features, diagnosis, treatment, and outcomes of LAM in male.
METHODS
We performed a literature review by searching for all the published reported cases of LAM in male during the past 35 years (April 1986-October 2021).
RESULTS
36 male patients described in 26 references were included in this article. The median age of onset was 34 years (interquartile range: 1-79). The most common initial manifestations were cough, dyspnea, respite, and hemoptysis, with pulmonary complications such as pneumothorax and chylothorax. Five patients (13.9%) were asymptomatic at admission. Nearly half of the 36 male patients had thin-walled air-filled cysts that were visible throughout both lungs. Considering the abovementioned atypical clinical features, misdiagnosis was committed in 8 patients (22.2%). In addition, patients with tuberous sclerosis complex lymphangioleiomyomatosis often have no pulmonary manifestations at onset but present multiple extrapulmonary manifestations and have higher rates of renal angiomyolipomas than patients with S-LAM (P < 0.01). Eventually, 4 patients with S-LAM eventually died.
CONCLUSION
Physicians should increase the awareness of LAM in male. Early monitoring of various systems should be recommended to ensure early management and active follow-up. Tuberous sclerosis complex patients should immediately be tracked for the onset of LAM disease to improve prognosis.
Topics: Humans; Male; Female; Adult; Lymphangioleiomyomatosis; Tuberous Sclerosis; Prognosis; Angiomyolipoma; Kidney Neoplasms; Lung Neoplasms
PubMed: 36596036
DOI: 10.1097/MD.0000000000032492 -
PloS One 2020Children are impacted when parents are ill. This systematic review gives an overview of the current state of research and extracts what children and parents found...
Informing children of their parent's illness: A systematic review of intervention programs with child outcomes in all health care settings globally from inception to 2019.
INTRODUCTION
Children are impacted when parents are ill. This systematic review gives an overview of the current state of research and extracts what children and parents found helpful in the interventions aimed at informing children of their parent's illness.
METHODS
This review was registered with PROSPERO and conducted in accordance with PRISMA guidelines. Five health and social science databases were searched from inception to November 2019 to identify original, peer-reviewed articles in English describing effective interventions. The authors selected and reviewed the studies independently, and any inconsistencies were resolved by discussion in face-to-face meetings and emails. A descriptive synthesis of evidence-based concepts from quantitative and qualitative studies was conducted.
RESULTS
A total of 13 892 titles and 144 full-text articles were reviewed with 32 selected for final inclusion, 21 quantitative, 11 qualitative and no mixed-method studies published from 1993 to November 2019. Most of the research was conducted in mental health, including substance abuse (n = 22), but also in cancer care (n = 6) and HIV care (n = 4). Most studies using quantitative method showed a small to moderately positive statistically significant intervention effect on the child's level of internalized symptoms. Content analysis of the results of studies employing qualitative methodology resulted in four concepts important to both children and parents in interventions (increased knowledge, more open communication, new coping strategies and changed feelings) and three additional concepts important to parents (observed changes in their children's behavior, the parent's increased understanding of their own child and the relief of respite).
CONCLUSIONS
In the literature there is evidence of mild to moderate positive effects on the child's level of internalized symptoms as well as concepts important to children and parent's worth noting when trying to bridge the still existing knowledge gaps. In further efforts the challenges of implementation as well as adaptation to differing clinical and personal situations appear key to address.
Topics: Adaptation, Psychological; Emotions; HIV Infections; HIV-1; Humans; Neoplasms; Parent-Child Relations; Parents
PubMed: 32453799
DOI: 10.1371/journal.pone.0233696 -
Frontiers in Psychiatry 2022Informal caregivers of people with a mental illness are at increased risk of developing depression, anxiety, and stress, so preventive interventions are needed.
INTRODUCTION
Informal caregivers of people with a mental illness are at increased risk of developing depression, anxiety, and stress, so preventive interventions are needed.
METHOD
The review was reported in PROSPERO (ID: CRD42018094454). The PsycINFO, PubMed, and Scopus databases were searched in June 2019. The Cochrane Risk of Bias and Jadad scale scores were used to assess study quality. Inclusion criteria were: RCTs of informal caregiver interventions regardless of the care receiver's mental illness and intervention modality. Interventions should be compared to a waitlist, treatment as usual or active control, taught in real-time by a mental health professional, include an outcome measure on psychological distress, and published in a peer-reviewed journal article in English. RCTs were excluded if the intervention was given in dyads (caregiver + care receiver), limited to the provision of respite care where the patient sample included a mix of both physical and psychological illnesses, unpublished, not peer-reviewed, study protocols, or dissertations.
RESULTS
A total of 2,148 studies were identified; of these, 44 RCT studies met the inclusion criteria, and 31 had sufficient data to conduct a meta-analysis including subgroup analysis ( = 1,899). The systematic review showed that thirty-one out of the 44 RCTs had an effect of the intervention on decreasing psychological distress. The results of the meta-analysis, which included informal caregiver interventions, compared to waitlist, treatment as usual, or active control, regardless of care-receiver mental illness or intervention modality showed a small effect of -0.32 (95% CI -0.53 to -0.11). The heterogeneity of the included studies was high ( = 78). The subgroup analysis included manualized interventions lasting at least 8 weeks and the subgroup analysis that included an active control showed a small effect and low heterogeneity. Lack of active control and long-term follow-up is a limitation of most of the studies.
CONCLUSION
The evidence supports that several interventions improve the mental health of caregivers. Manualized interventions ≥ 8 weeks with active participation are most effective. Future RCTs should improve methodology, and research should investigate which intervention modality is most effective for what kind of caregiver. Future research should clearly specify what the included intervention components are, use longer follow-up times, and conduct mediational analyses to better understand what mechanisms create the effect of an intervention.
SYSTEMATIC REVIEW REGISTRATION
Identifier: CRD42018094454.
PubMed: 36276315
DOI: 10.3389/fpsyt.2022.949066