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The Gerontologist Aug 2021Though exercise for care recipients receives considerable emphasis, few dyadic studies focus on caregivers. This systematic review identified dyadic exercise... (Review)
Review
BACKGROUND AND OBJECTIVES
Though exercise for care recipients receives considerable emphasis, few dyadic studies focus on caregivers. This systematic review identified dyadic exercise interventions, which measured outcomes for older adult caregivers. Studies that met inclusion criteria were examined to better understand whether caregivers derived greater benefit from exercising with care recipients, or not exercising at all.
RESEARCH DESIGN AND METHODS
PRISMA guidelines were followed to identify quantitative studies of dyadic exercise interventions in which caregivers enrolled with care recipients, and either coparticipated in exercise; or while their care recipients exercised independently, caregivers received a separate, nonexercise intervention or usual care (UC). To be included, studies had to measure physical or psychosocial outcomes for caregivers. Study quality was assessed via the Downs and Black checklist.
RESULTS
Eleven studies met inclusion criteria. In six, the dyad exercised; in five, care recipients exercised while caregivers received a separate program, or UC. Results suggest that caregivers may improve both psychosocial and physical health when exercising together with care recipients. Caregivers who did not exercise but received a separate, nonexercise intervention, such as support, education, or respite, showed psychosocial benefits. Those who received UC were less likely to derive physical or psychosocial benefits. Included studies were fair to good quality with moderate to high risk of bias.
DISCUSSION AND IMPLICATIONS
Often examined secondarily, caregivers are overlooked for participation in interventions with care recipients. This analysis suggests that caregivers may benefit from dyadic interventions in which they either exercise together with their care recipients or receive a separate nonexercise intervention or respite.
Topics: Aged; Caregivers; Humans; Quality of Life
PubMed: 32614050
DOI: 10.1093/geront/gnaa043 -
Health Economics Review Sep 2021Nearly 19 million people across OECD countries are living with dementia, and millions of family caregivers are affected by the disease. The costs of informal care are... (Review)
Review
BACKGROUND
Nearly 19 million people across OECD countries are living with dementia, and millions of family caregivers are affected by the disease. The costs of informal care are estimated to represent 40-75% of the total dementia cost exceeding formal care time and medical costs.
OBJECTIVE
To conduct a systematic review to evaluate the methodological quality and factors associated with high informal care hours per month that increase societal costs, and to identify what type of interventions may alleviate the entire burden of informal and formal caregiving.
METHODS
The systematic review was registered at PROSPERO (15.12.2020). A search in Medline, Embase, PsycINFO, and web of science for observational studies, cost-effectiveness, and cost of illness (COI) analyses on resource utilization in dementia (RUD) was conducted on 1 December 2020. Our inclusion criteria included a requirement that studies had to use the original RUD, RUD-FOCA or RUD lite in terms of hours or days per month, and costs as primary or secondary outcome, OECD countries, within the last 20 years and a sample population comprising persons with dementia (PwD) ≥65 years and their caregivers. We followed the PRISMA, GRADE, PICO guidelines and Drummond criteria to assess the methodology and quality of the studies.
RESULTS
Of 307 studies, 26 cross-sectional and 3 longitudinal cohort studies were included in the analyses. Two studies had a randomized controlled trial (RCT) design. The methods and cost categories in each study varied widely. Disease severity, caregiver factors, and behavioural and psychological symptoms of dementia (BPSD) were associated with high informal care hours and societal cost. One RCT found no effect of a non-pharmacological intervention on informal care hours, yet another RCT found a cost-effective impact of an in-home respite care programme reducing informal care burden and costs.
CONCLUSION
The divergent use of the RUD components within included studies encourage more harmonized analyses. There are only two RCTs on RUD, one of which shows a significant treatment effect. Larger sample sizes and longer follow-up periods are required in future RCTs with dedicated focus on cost-enhancing and resource intensive factors such as disease severity and BPSD. Novel interventions must diversify between caregiver and PwD groups.
PROSPERO REGISTRATION
CRD42021226388 .
PubMed: 34536149
DOI: 10.1186/s13561-021-00333-z -
Genetics in Medicine : Official Journal... Apr 2024Rare genetic neurodevelopmental disorders associated with intellectual disability require lifelong multidisciplinary care. Clinical practice guidelines may support... (Review)
Review
PURPOSE
Rare genetic neurodevelopmental disorders associated with intellectual disability require lifelong multidisciplinary care. Clinical practice guidelines may support healthcare professionals in their daily practice, but guideline development for rare conditions can be challenging. In this systematic review, the characteristics and methodological quality of internationally published recommendations for this population are described to provide an overview of current guidelines and inform future efforts of European Reference Network ITHACA (Intellectual disability, TeleHealth, Autism, and Congenital Anomalies).
METHODS
MEDLINE, Embase, and Orphanet were systematically searched to identify guidelines for conditions classified as "rare genetic intellectual disability" (ORPHA:183757). Methodological quality was assessed using the Appraisal of Guidelines, Research, and Evaluation II tool.
RESULTS
Seventy internationally published guidelines, addressing the diagnosis and/or management of 28 conditions, were included. The methodological rigor of development was highly variable with limited reporting of literature searches and consensus methods. Stakeholder involvement and editorial independence varied as well. Implementation was rarely addressed.
CONCLUSION
Comprehensive, high-quality guidelines are lacking for many rare genetic neurodevelopmental disorders. Use and transparent reporting of sound development methodologies, active involvement of affected individuals and families, robust conflict of interest procedures, and attention to implementation are vital for enhancing the impact of clinical practice recommendations.
Topics: Humans; Intellectual Disability; Quality Improvement; Evidence-Based Medicine; Neurodevelopmental Disorders; Consensus
PubMed: 38224026
DOI: 10.1016/j.gim.2024.101071 -
BMC Geriatrics Mar 2023There is some evidence to suggest that animal-assisted interventions can have beneficial impact for residents in long-term care, but the focus of the evidence has... (Meta-Analysis)
Meta-Analysis
BACKGROUND
There is some evidence to suggest that animal-assisted interventions can have beneficial impact for residents in long-term care, but the focus of the evidence has largely been on behavioural and psychosocial measured outcomes. Animals, either as companion animals or in the form of pet/animal-assisted therapy, may provide benefits in the form of social contact, as well as opportunities for sensory experiences and meaningful engagement not picked up by outcome tools. This review aimed to create a state-of-knowledge synthesis, bringing together qualitative and quantitative findings, on the impact of animal-human interaction on care home residents and care home staff.
METHODS
Fourteen databases were searched from inception to July 2020. Forward and backward citation chasing of included articles was conducted. Screening was undertaken independently by a team of reviewers. Thematic synthesis and meta-analysis were used to synthesise the qualitative and quantitative data.
RESULTS
Thirty-four studies, published in 40 articles (20 qualitative and 20 quantitative) were included. Five themes relating to resident wellbeing were identified in the qualitative evidence synthesis. These were animals as 'living beings', reminiscence and storytelling, caring (as 'doing' and 'feeling'), respite (from loneliness, institutionalisation, and illness), and sensory engagement. A sixth theme related to staff perceptions and wellbeing, and a seventh to animal health and wellbeing. Maintaining identity was identified as an overarching theme. The majority of randomised trials had small sample sizes and were rated as low quality, mostly showing no evidence of beneficial effect. There was, however, limited evidence of a positive effect of pet/animal interaction on outcomes of loneliness, anxiety and depression, supporting the themes of respite and sensory engagement.
CONCLUSIONS
The presence of animals can significantly impact the health and wellbeing of some care home residents. Residents had meaningful relationships with animals and derived pleasure and comfort from them. Interacting with animals offered residents a way to maintain a sense of self in the care homes, and with support, residents with dementia could also express their identities. Facilitating residents to interact with animals as part of person-centred care may also help residents to feel 'at home' in the care home.
TRIAL REGISTRATION
PROSPERO registration no: CRD42017058201.
Topics: Animals; Humans; Animal Assisted Therapy; Long-Term Care
PubMed: 36964508
DOI: 10.1186/s12877-023-03834-0 -
Palliative Medicine Jul 2019Effectiveness evidence of complementary therapies in people with advanced disease is uncertain, and yet people are still keen to engage in complementary therapy....
BACKGROUND
Effectiveness evidence of complementary therapies in people with advanced disease is uncertain, and yet people are still keen to engage in complementary therapy. Insights into people's experiences of complementary therapy in palliative care, the perceived benefits, and how they want it delivered, can inform clinical guidelines and suggest ways to test therapies more appropriately in future evaluations.
AIMS
Explore in people with advanced disease (1) the experiences and perceptions of benefits and harms of aromatherapy, massage, and reflexology and (2) how they would like these therapies delivered.
DESIGN
A systematic review and thematic synthesis of qualitative studies. Database search terms were related to palliative care, aromatherapy, reflexology and massage. Citations and full texts were reviewed independently against predefined inclusion criteria. Studies were appraised for quality. This review is registered at PROSPERO (22/11/2017 CRD42017081409).
DATA SOURCES
MEDLINE, EMBASE, PsycINFO, AMED, CINAHL, KoreaMed and ProQuest with a bibliography search to June 2018.
RESULTS
Five qualitative studies in advanced cancer were identified. Three analytical themes were identified: (1) Experience during the therapy (enhanced well-being and escapism), (2) beyond the complementary therapy session (lasting benefits and overall evaluation), and (3) delivery of complementary therapy in palliative care (value of the therapist and delivery of the complementary therapy).
CONCLUSIONS
People with advanced cancer experience benefits from aromatherapy, reflexology and massage including enhanced well-being, respite, and escapism from their disease. Complementary therapy interventions should be developed in consultation with the target population to ensure they are delivered and evaluated, where feasible, as they wish.
Topics: Aromatherapy; Humans; Massage; Musculoskeletal Manipulations; Palliative Care
PubMed: 31060455
DOI: 10.1177/0269216319846440 -
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 -
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 -
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 -
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