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Cancer Nursing Jun 2024Interventions to foster resilience may promote mental health recovery after exposure to stressors. However, comprehensive systematic syntheses of such evidence in family...
BACKGROUND
Interventions to foster resilience may promote mental health recovery after exposure to stressors. However, comprehensive systematic syntheses of such evidence in family members of pediatric cancer patients are lacking.
OBJECTIVE
To systematically review and meta-analyze the evidence for the effects of psychological interventions at fostering resilience in family members of pediatric cancer patients.
METHODS
PubMed, Cumulative Index to Nursing and Allied Health Literature, and 9 other databases were searched for articles published until March 2023. Empirical studies on psychological interventions to improve resilience in family members of pediatric cancer patients were included. Full-text and quality appraisals were performed independently by 2 reviewers. Pooled effect sizes were calculated using random-effects meta-analyses.
RESULTS
Seventeen studies were included, of which 10 were included in the meta-analyses. There was a positive effect of interventions on resilience at postintervention time points, but no effects on depressive symptoms, stress, or well-being. The improvement in resilience was sustained in the short term (≤3 months) and medium term (>3 to ≤6 months), with delayed effects on depressive symptoms and stress. In the 6 studies that reported moderate effect sizes, the interventions comprised problem-solving skills, cognitive strategies, promotion of personal strength, and social resources.
CONCLUSION
The findings indicated that psychological interventions targeting resilience have the potential to positively affect the resilience and mental health outcomes of family members, particularly parents.
IMPLICATIONS FOR PRACTICE
Psychological interventions targeting resilience hold promise in improving the mental health of family members. Future interventions should clearly specify the characteristics of the intervention, such as mode of delivery, format, and duration.
PubMed: 38941110
DOI: 10.1097/NCC.0000000000001368 -
Health and Social Care Delivery Research Jun 2024People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often...
BACKGROUND
People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis.
OBJECTIVES
(1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources.
DESIGN AND METHODS
Work package 1 rapid scoping reviews - three reviews focused on the health and social care needs of older people with learning disabilities and 'behaviours that challenge others', and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice - analysis of published service standards to assess excellence criteria, by mapping services, interviews ( = 30), survey ( = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living ( = 4); residential/nursing home ( = 2); day activities ( = 1), Shared Lives ( = 2). Fieldwork (20 days per model), interviews ( = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 - co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 - three stakeholder workshops co-produced service recommendations.
FINDINGS
The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and 'behaviours that challenge others'. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. 'Planning Ahead' cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers' forum, a film, a podcast and academic papers.
CONCLUSIONS
There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. 'Behaviours that challenge others' was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design.
LIMITATIONS
The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families' plans, and therefore change, may be frustrated by insufficient service resources.
FUTURE WORK
Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die 'in place'; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the 'Planning Ahead' cards.
TRIAL REGISTRATION
This trial is registered as ISRCTN74264887.
FUNDING
This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in ; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.
Topics: Humans; Caregivers; Aged; Learning Disabilities; Female; Male; Middle Aged; Adult; Social Support; Qualitative Research; Aged, 80 and over; Anthropology, Cultural; Health Services Needs and Demand
PubMed: 38940476
DOI: 10.3310/MTHW2644 -
The Cochrane Database of Systematic... Jun 2024Peripherally inserted central catheters (PICCs) facilitate diagnostic and therapeutic interventions in health care. PICCs can fail due to infective and non-infective... (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
Peripherally inserted central catheters (PICCs) facilitate diagnostic and therapeutic interventions in health care. PICCs can fail due to infective and non-infective complications, which PICC materials and design may contribute to, leading to negative sequelae for patients and healthcare systems.
OBJECTIVES
To assess the effectiveness of PICC material and design in reducing catheter failure and complications.
SEARCH METHODS
The University of Queensland and Cochrane Vascular Information Specialist searched the Cochrane Vascular Specialised Register, CENTRAL, MEDLINE, Embase, and CINAHL databases and the WHO ICTRP and ClinicalTrials.gov trials registers to 16 May 2023. We aimed to identify other potentially eligible trials or ancillary publications by searching the reference lists of retrieved included trials, as well as relevant systematic reviews, meta-analyses, and health technology assessment reports. We contacted experts in the field to ascertain additional relevant information.
SELECTION CRITERIA
We included randomised controlled trials (RCTs) evaluating PICC design and materials.
DATA COLLECTION AND ANALYSIS
We used standard Cochrane methods. Our primary outcomes were venous thromboembolism (VTE), PICC-associated bloodstream infection (BSI), occlusion, and all-cause mortality. Secondary outcomes were catheter failure, PICC-related BSI, catheter breakage, PICC dwell time, and safety endpoints. We assessed the certainty of evidence using GRADE.
MAIN RESULTS
We included 12 RCTs involving approximately 2913 participants (one multi-arm study). All studies except one had a high risk of bias in one or more risk of bias domain. Integrated valve technology compared to no valve technology for peripherally inserted central catheter design Integrated valve technology may make little or no difference to VTE risk when compared with PICCs with no valve (risk ratio (RR) 0.71, 95% confidence interval (CI) 0.19 to 2.63; I² = 0%; 3 studies; 437 participants; low certainty evidence). We are uncertain whether integrated valve technology reduces PICC-associated BSI risk, as the certainty of the evidence is very low (RR 0.20, 95% CI 0.01 to 4.00; I² = not applicable; 2 studies (no events in 1 study); 257 participants). Integrated valve technology may make little or no difference to occlusion risk when compared with PICCs with no valve (RR 0.86, 95% CI 0.53 to 1.38; I² = 0%; 5 studies; 900 participants; low certainty evidence). We are uncertain whether use of integrated valve technology reduces all-cause mortality risk, as the certainty of evidence is very low (RR 0.85, 95% CI 0.44 to 1.64; I² = 0%; 2 studies; 473 participants). Integrated valve technology may make little or no difference to catheter failure risk when compared with PICCs with no valve (RR 0.80, 95% CI 0.62 to 1.03; I² = 0%; 4 studies; 720 participants; low certainty evidence). We are uncertain whether integrated-valve technology reduces PICC-related BSI risk (RR 0.51, 95% CI 0.19 to 1.32; I² = not applicable; 2 studies (no events in 1 study); 542 participants) or catheter breakage, as the certainty of evidence is very low (RR 1.05, 95% CI 0.22 to 5.06; I² = 20%; 4 studies; 799 participants). Anti-thrombogenic surface modification compared to no anti-thrombogenic surface modification for peripherally inserted central catheter design We are uncertain whether use of anti-thrombogenic surface modified catheters reduces risk of VTE (RR 0.67, 95% CI 0.13 to 3.54; I² = 15%; 2 studies; 257 participants) or PICC-associated BSI, as the certainty of evidence is very low (RR 0.20, 95% CI 0.01 to 4.00; I² = not applicable; 2 studies (no events in 1 study); 257 participants). We are uncertain whether use of anti-thrombogenic surface modified catheters reduces occlusion (RR 0.69, 95% CI 0.04 to 11.22; I² = 70%; 2 studies; 257 participants) or all-cause mortality risk, as the certainty of evidence is very low (RR 0.49, 95% CI 0.05 to 5.26; I² = not applicable; 1 study; 111 participants). Use of anti-thrombogenic surface modified catheters may make little or no difference to risk of catheter failure (RR 0.76, 95% CI 0.37 to 1.54; I² = 46%; 2 studies; 257 participants; low certainty evidence). No PICC-related BSIs were reported in one study (111 participants). As such, we are uncertain whether use of anti-thrombogenic surface modified catheters reduces PICC-related BSI risk (RR not estimable; I² = not applicable; very low certainty evidence). We are uncertain whether use of anti-thrombogenic surface modified catheters reduces the risk of catheter breakage, as the certainty of evidence is very low (RR 0.15, 95% CI 0.01 to 2.79; I² = not applicable; 2 studies (no events in 1 study); 257 participants). Antimicrobial impregnation compared to non-antimicrobial impregnation for peripherally inserted central catheter design We are uncertain whether use of antimicrobial-impregnated catheters reduces VTE risk (RR 0.54, 95% CI 0.05 to 5.88; I² = not applicable; 1 study; 167 participants) or PICC-associated BSI risk, as the certainty of evidence is very low (RR 2.17, 95% CI 0.20 to 23.53; I² = not applicable; 1 study; 167 participants). Antimicrobial-impregnated catheters probably make little or no difference to occlusion risk (RR 1.00, 95% CI 0.57 to 1.74; I² = 0%; 2 studies; 1025 participants; moderate certainty evidence) or all-cause mortality (RR 1.12, 95% CI 0.71 to 1.75; I² = 0%; 2 studies; 1082 participants; moderate certainty evidence). Antimicrobial-impregnated catheters may make little or no difference to risk of catheter failure (RR 1.04, 95% CI 0.82 to 1.30; I² = not applicable; 1 study; 221 participants; low certainty evidence). Antimicrobial-impregnated catheters probably make little or no difference to PICC-related BSI risk (RR 1.05, 95% CI 0.71 to 1.55; I² = not applicable; 2 studies (no events in 1 study); 1082 participants; moderate certainty evidence). Antimicrobial-impregnated catheters may make little or no difference to risk of catheter breakage (RR 0.86, 95% CI 0.19 to 3.83; I² = not applicable; 1 study; 804 participants; low certainty evidence).
AUTHORS' CONCLUSIONS
There is limited high-quality RCT evidence available to inform clinician decision-making for PICC materials and design. Limitations of the current evidence include small sample sizes, infrequent events, and risk of bias. There may be little to no difference in the risk of VTE, PICC-associated BSI, occlusion, or mortality across PICC materials and designs. Further rigorous RCTs are needed to reduce uncertainty.
Topics: Humans; Randomized Controlled Trials as Topic; Catheterization, Peripheral; Catheter-Related Infections; Equipment Failure; Equipment Design; Venous Thromboembolism; Catheter Obstruction; Central Venous Catheters; Cause of Death; Bias; Catheterization, Central Venous; Bacteremia
PubMed: 38940297
DOI: 10.1002/14651858.CD013366.pub2 -
Clinical Otolaryngology : Official... Jun 2024As patients nowadays tend to have multiple diseases and complex medical histories, our aim was to identify high-quality, non-instrumental dysphagia screening tools used... (Review)
Review
INTRODUCTION
As patients nowadays tend to have multiple diseases and complex medical histories, our aim was to identify high-quality, non-instrumental dysphagia screening tools used for the detection of adult dysphagia cases in all disease categories in acute-care settings.
METHOD
A literature search was conducted in five databases from each database's earliest inception to 31 July 2021 and guided by five keywords: 'dysphagia', 'deglutition', 'screening', 'test' and 'measure'. Without limiting the search in any specific disease category, reviewers assessed original studies and identified tools if they had been validated against instrumental evaluations and if they had been designed as a pass-fail procedure to screen whether dysphagia is absent or present. We further excluded any tool if it was (1) for pediatric focus, or (2) a patient self-report questionnaire. All final tool candidates underwent a methodological quality appraisal using the Revised Tool for the Quality Assessment of Diagnostic Accuracy Studies (QUADAS-2).
RESULT
Out of 195 studies with 165 tools identified, 20 tool candidates underwent QUADAS-2 review. We found six high-quality, non-instrumental screening tools for detecting adult dysphagia cases in acute-care settings, including the Yale Swallow Protocol, Gugging Swallowing Screen, Toronto Bedside Swallowing Screening Test (both English and Portuguese versions), Sapienza Global Bedside Evaluation of Swallowing and Two-Step Thickened Water Test. These high-quality tools were developed primarily for patients with stroke. Only Yale Swallow Protocol was originally tested for heterogeneous populations with stroke, multiple sclerosis, traumatic brain injury, oesophageal surgery, neurosurgery and head-and-neck cancer.
CONCLUSIONS
The results highlight the gap in the unavailability of high-quality dysphagia screening tool in several emerged high-risk populations including elderly inpatients, or patients following endotracheal extubation. Further research is needed to determine whether these six tools can be effectively applied across different high-risk populations in acute-care settings to screen for cases finding.
PubMed: 38940226
DOI: 10.1111/coa.14194 -
Parkinson's Disease 2024Fatigue is a common and debilitating symptom affecting a significant proportion of individuals with Parkinson's disease (PD), often overshadowing even motor symptoms in... (Review)
Review
Fatigue is a common and debilitating symptom affecting a significant proportion of individuals with Parkinson's disease (PD), often overshadowing even motor symptoms in its impact on quality of life. The accurate definition and assessment of mental fatigue in PD is crucial for both clinical management and research, yet it remains a challenge due to the subjective nature of the symptom and the heterogeneity of assessment scales. This systematic review examined the existing measures of self-reported mental fatigue in PD by searching through PubMed, Embase, and Scopus databases using specific keywords from 2001 to 2024. Out of the 4182 articles found, 40 met the inclusion criteria, and 14 different scales were identified to measure self-reported fatigue in PD patients. However, most of these scales lack a consistent definition of fatigue, indicating a need for validated combinations of unidimensional and multidimensional scales to accurately assess mental fatigue in PD. The review found that it is best to use Fatigue Severity Inventory (FSI) and Multidimensional Fatigue Inventory (MdFI) to screen for severity of PD mental fatigue and Neuro-QoL Item Bank v1.0 (Neuro-QoL) to evaluate its impact on patients' lives. Furthermore, multidimensional scales Parkinson's Disease Questionnaire (PDQ) and Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT-F) are frequently coupled with Fatigue Severity Scale (FSS), Parkinson's Fatigue Scale (PFS), and/or Modified Fatigue Impact Scale (MFIS) due to their short length and holistic coverage of variables in patients' quality of life. Combining fatigue scales can be used for screening and scoring methods. The review also recommends validating fatigue scales translation and combining them with biomarkers to improve the accuracy and effectiveness of fatigue assessment in clinical practice. Future research should analyze correlations between fatigue scales, expand language types, and explore the link between fatigue scales and the pathophysiological basis of PD. Our findings underscore the need for a standardized approach to the measurement of fatigue in PD and set the stage for future research to consolidate assessment tools that can reliably guide treatment strategies and improve patient outcomes.
PubMed: 38939533
DOI: 10.1155/2024/9614163 -
Gynecologic Oncology Reports Aug 2024Studies suggest a need for new diagnostic approaches for cervical cancer including microRNA technology. In this review, we assessed the diagnostic accuracy of microRNAs...
Studies suggest a need for new diagnostic approaches for cervical cancer including microRNA technology. In this review, we assessed the diagnostic accuracy of microRNAs in detecting cervical cancer and Cervical Intraepithelial Neoplasia (CIN). We performed a systematic review following the Preferred Reporting Items for Systematic Review and Meta-Analysis guideline for protocols (PRISMA-P). We searched for all articles in online databases and grey literature from 01st January 2012 to 16th August 2022. We used the quality assessment of diagnostic accuracy studies tool (QUADAS-2) to assess the risk of bias of included studies and then conducted a Random Effects Meta-analysis. We identified 297 articles and eventually extracted data from 24 studies. Serum/plasma concentration miR-205, miR-21, miR-192, and miR-9 showed highest diagnostic accuracy (AUC of 0.750, 0.689, 0.980, and 0.900, respectively) for detecting CIN from healthy controls. MicroRNA panels (miR-21, miR-125b and miR-370) and (miR-9, miR-10a, miR-20a and miR-196a and miR-16-2) had AUC values of 0.897 and 0.886 respectively for detecting CIN from healthy controls. For detection of cervical cancer from healthy controls, the most promising microRNAs were miR-21, miR-205, miR-192 and miR-9 (AUC values of 0.723, 0.960, 1.00, and 0.99 respectively). We report higher diagnostic accuracy of upregulated microRNAs, especially miR-205, miR-9, miR-192, and miR-21. This highlights their potential as stand-alone screening or diagnostic tests, either with others, in a new algorithm, or together with other biomarkers for purposes of detecting cervical lesions. Future studies could standardize quantification methods, and also study microRNAs in higher prevalence populations like in sub-Saharan Africa and South Asia. Our review protocol was registered in PROSPERO (CRD42022313275).
PubMed: 38939506
DOI: 10.1016/j.gore.2024.101424 -
Andrology Jun 2024Erectile dysfunction (ED) is prevalent not only among older males but also in younger. The physical activity has been considered a potential protective factor against... (Review)
Review
BACKGROUND
Erectile dysfunction (ED) is prevalent not only among older males but also in younger. The physical activity has been considered a potential protective factor against ED. However, there is a lack of comprehensive research on the impact of exercise interventions specifically on ED patients.
OBJECTIVES
This study aimed to assess the effectiveness of the physical activity in addressing ED symptoms among adult males, without the use of the phosphodiesterase-5 inhibitors (PDE5i) therapy. Additionally, subgroup analysis was performed to evaluate the effects of different exercise modes.
METHODS
Employing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, we conducted a systematic literature search. A registered protocol is available at PROSPERO (CRD42023441717). Our search spanned PubMed, Web of Science, Embase, and Cochrane Library, with data collection ending on 11 April 2024. The Cochrane Risk of Bias tool was applied by two independent authors to assess randomized controlled trial (RCT) quality. The primary endpoint was determined as the International Index of Erectile Function (IIEF) scores.
RESULTS
A total of seven RCTs were included. Utilizing a random-effects model, the estimated standardized mean difference (SMD) was 0.69 (95% confidence interval [CI] 0.37 to 1.02, p < 0.0001) for the overall impact of the physical activity. Subgroup analysis revealed SMDs of 0.81 (95% CI 0.56 to 1.06; p < 0.00001) for aerobic training alone. However, no significant improvement was observed with pelvic floor muscle training (PFMT) (SMD 0.03; 95% CI -0.68 to 0.75; p = 0.93) and a combination of aerobic and resistance training (SMD 0.84; 95% CI -0.41 to 2.09; p = 0.19) CONCLUSION: The findings of this study highlight a significant improvement in the erectile function following exercise interventions for adult men with ED, who are not receiving the PDE5i therapy, especially in conducting aerobic training alone. However, PFMT and a combination of aerobic and resistance training did not show significant improvements in erectile function from this study.
PubMed: 38937909
DOI: 10.1111/andr.13682 -
Journal of Clinical Nursing Jun 2024To compare the effectiveness of different types of eHealth interventions in improving exercise endurance and quality of life in chronic obstructive pulmonary disease... (Review)
Review
AIMS
To compare the effectiveness of different types of eHealth interventions in improving exercise endurance and quality of life in chronic obstructive pulmonary disease (COPD) patients.
BACKGROUND
COPD is a chronic airway disease characterized by persistent respiratory symptoms and airflow limitation. eHealth interventions have been accepted and recognized by healthcare professionals and COPD patients as an effective alternative to pulmonary rehabilitation. However, it is not clear which eHealth interventions are effective and preferred for exercise endurance and quality of life in COPD patients.
DESIGN
A systematic review and network meta-analysis based on PRISMA-NMA.
METHODS
We searched nine electronic databases to identify randomized controlled trials addressing the effect of eHealth interventions on the exercise endurance and quality of life of COPD patients from their inception to 30 October 2022. First, a random-effects model was chosen to conduct a traditional meta-analysis to directly investigate the efficacy of different eHealth interventions. Next, a network meta-analysis was performed to evaluate the relative efficacy of the eHealth interventions for COPD. The quality of the data was assessed using the Cochrane Risk of Bias tool.
RESULTS
Fifty-one studies containing six eHealth interventions (telemonitoring, application [APP], web-based interventions, phone calls, virtual reality and combined interventions [≥two types]) were included in the final analysis. Network meta-analysis showed that telemonitoring, APP, web-based interventions and combined interventions improved exercise endurance in COPD patients, with telemonitoring being the most effective. Web-based interventions and apps are effective in improving the quality of life, and web-based interventions are the most effective.
CONCLUSIONS
This study confirms that eHealth interventions can improve exercise endurance and quality of life in COPD patients. In the future, healthcare professionals can promote the use of telemedicine in COPD patients to enhance their exercise endurance and quality of life according to their individual needs.
RELEVANCE TO CLINICAL PRACTICE
This evidence suggests that eHealth interventions can improve exercise endurance and quality of life in COPD patients. Therefore, in the future, eHealth interventions could be used to maximize their effectiveness in improving exercise endurance and quality of life in COPD patients.
PubMed: 38937908
DOI: 10.1111/jocn.17225 -
Explore (New York, N.Y.) Jun 2024Prevention and management of nipple problems are crucial during the postpartum period for effective breastfeeding. Breastmilk is the most commonly recommended method for... (Review)
Review
INTRODUCTION
Prevention and management of nipple problems are crucial during the postpartum period for effective breastfeeding. Breastmilk is the most commonly recommended method for lactating women. However, insufficient studies have proven its superiority over other methods in the current literature. This study aims to determine the effects of natural products compared to breast milk in preventing and treating nipple trauma and pain in lactating women.
METHODS
In this review, we investigated studies from PubMed, Web of Science, Cochrane Library, MEDLINE, CINAHL, Scopus, and Google Scholar databases that met the inclusion criteria. We also assessed the studies' methodological quality with the Cochrane and JBI checklists. This study was performed based on the Guidelines of Systematic Reporting of Examination presented in the PRISMA checklist. The search protocol has been registered at the PROSPERO International Prospective Register of Systematic Reviews.
RESULTS
A total of ten published studies, including 1139 lactating women, were included in this review. The meta-analysis results showed a significant effect of natural product intervention on nipple trauma (Hedge's g -0.702, Q = 81,154, I =91,374 %, p < 0.001), soreness (Hedge's g =-0.648, Q = 7,092, I =71,801 %, p < 0.001), and pain levels (Hedge's g =-0.613, Q = 25,058, I =76,056 %, p < 0.001) experienced by lactating women.
CONCLUSION
The findings showed that natural products have greater potential than breast milk in managing nipple pain, trauma, and soreness. However, the evidence for these interventions is low or very low quality. Further research is needed to determine the most effective treatment for nipple trauma in lactating women.
PubMed: 38937192
DOI: 10.1016/j.explore.2024.103019 -
BJOG : An International Journal of... Jun 2024Over 70 000 donor-conceived (DC) people have been born in the UK since 1991. Little is known about their long-term psychological outcomes and no systematic review has... (Review)
Review
BACKGROUND
Over 70 000 donor-conceived (DC) people have been born in the UK since 1991. Little is known about their long-term psychological outcomes and no systematic review has assessed these.
OBJECTIVES
To conduct a systematic review of the psychological experiences of DC people through childhood and adulthood (Prospero: CRD42021257863).
SEARCH STRATEGY
Searches of Cumulative Index to Nursing and Allied Health Literature (CINHAL), the Excerpta Medica database (Embase), MEDLINE® and PsycINFO, conducted on 4 January 2024.
SELECTION CRITERIA
Quantitative and qualitative studies were included if: there were five or more participants; they were peer reviewed; and any DC psychological outcomes were assessed. No limits on date, language or country were applied.
DATA COLLECTION AND ANALYSIS
Double screening, selection, data extraction and quality assessment were performed, using Joanna Briggs Institute (JBI) scoring.
MAIN RESULTS
Fifty studies (with 4666 DC participants), mostly from high-income anglophone countries, with heterogeneity of design, populations and outcome measures, were included. Of 19 comparative studies, 14 found no difference in outcomes between DC and non-DC people, ten found better outcomes (in health, well-being, self-esteem and emotional warmth) and six found worse outcomes (increased autism spectrum disorder and attention deficit hyperactivity disorder, addiction issues, mental illness, disruptive behaviour and identity problems). Qualitative data revealed common themes relating to identity formation, mistrust and concerns regarding genetic heritage. The evidence regarding adulthood outcomes was very limited.
CONCLUSIONS
The research on DC individuals presents a nuanced picture, with most studies suggesting comparable or improved outcomes in terms of well-being and relationships, but with a notable minority indicating higher rates of mental health and identity struggles. Qualitative findings underscore common negative experiences, whereas the early disclosure of DC status appears beneficial for psychological well-being.
PubMed: 38936405
DOI: 10.1111/1471-0528.17892