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Journal of Pediatric Nursing 2023Parents of children and youth with special healthcare needs (PCHN) are under particular pressure that can lead to physical, emotional, and social difficulties. Respite...
BACKGROUND
Parents of children and youth with special healthcare needs (PCHN) are under particular pressure that can lead to physical, emotional, and social difficulties. Respite care services provide temporary relief for PCHNs from their caregiving responsibilities. Several studies have examined why PCHNs do not make greater use of these potentially supportive services, but existing studies do not focus on the psychological or subjective aspects of this process.
OBJECTIVES
The present study aims to understand the reasons why PCHNs, mothers in particular, (do not) use these services, with the underlying goal of understanding what parents' needs and expectations are regarding these services.
METHODS
The present study is based on a qualitative thematic analysis of the experience of respite services of 14 Belgian mothers PCHN.
RESULTS
The results showed that PCHNs regularly exceed their limits and are often on the verge of physical and emotional exhaustion and that respite services could be a way to meet their needs. However, issues of availability and accessibility impede equal access to these services.
CONCLUSIONS
These findings highlight the need for a comprehensive approach to respite care, by including PCHNs in the process as early as possible, not normalizing exhaustion as the trigger, and not focusing solely on the needs of children when the need arises.
IMPLICATIONS FOR PRACTICES
Increasing the flexibility of the services, providing a reassuring environment, facilitating administrative procedures, and providing information about these services as early as possible appear to be priorities for facilitating the use of respite care services.
Topics: Female; Adolescent; Child; Humans; Respite Care; Disabled Persons; Parents; Qualitative Research; Health Services Needs and Demand; Caregivers
PubMed: 37414622
DOI: 10.1016/j.pedn.2023.06.017 -
Geriatric Nursing (New York, N.Y.) 2023Respite care provides alternative care for persons living with dementia (PLWD) and is intended to alleviate the burden of caregiving. However, the evaluation of respite...
Respite care provides alternative care for persons living with dementia (PLWD) and is intended to alleviate the burden of caregiving. However, the evaluation of respite programs is limited. Time Out Weekly Smile (TOWS) is a virtual intergenerational respite care program designed to meet the needs of PLWD and their care partners and provide allied health students opportunities to serve as respite volunteers. This multi-method pilot study aimed to evaluate the experience of TOWS participation for all (i.e., care partners, PLWD, students) and identify outcomes of interest for future efficacy studies. Semi-structured interviews with all participants after experiencing TOWS were analyzed using conventional content analysis methods and student surveys of dementia attitudes were summarized. Results demonstrated lasting mutual benefits for all participants including social connection and creating meaning. Our findings suggest that including all respite care participants in future efficacy studies will elucidate the wide impact of respite care programs.
Topics: Humans; Caregivers; Dementia; Pilot Projects
PubMed: 37797545
DOI: 10.1016/j.gerinurse.2023.09.003 -
JMIR Nursing Apr 2024Caregiving dyads in palliative care are confronted with complex care needs. Respite care services can be highly beneficial in alleviating the caregiving burden,...
BACKGROUND
Caregiving dyads in palliative care are confronted with complex care needs. Respite care services can be highly beneficial in alleviating the caregiving burden, supporting survivorship and dying at home. Yet, respite care services are difficult to locate and access in the province of Quebec, Canada, particularly when navigating ubiquitous sources of online health information of varying quality.
OBJECTIVE
This project aimed to (1) compile a list of at-home palliative respite care services in Quebec, Canada; (2) describe key accessibility features for each respite care service; (3) identify accessibility gaps and opportunities; and (4) describe a novel method for conducting environmental scans using internet search engines, internet-based community health databases, and member checking.
METHODS
A novel environmental scan methodology using 2 internet-based targeted databases and 1 internet search engine was conducted. Results were screened and data were extracted, descriptively analyzed, and geographically schematized.
RESULTS
A total of 401 services were screened, and 52 at-home respite care services specific to palliative populations were identified, compiled, and analyzed. These respite care services were characterized by various types of assistance, providers, fees, and serviced geographical regions. Accessibility was explored through the lens of service amenability, availability, eligibility, and compatibility. The data revealed important barriers to accessing respite care services, such as a lack of readily available information on service characteristics, limited availability, and a time-consuming, technical search process for potential respite care users and clinicians to identify appropriate services.
CONCLUSIONS
Both methodological and contextual knowledge have been gained through this environmental scan. Few methodologies for conducting internet-based environmental scans have been clearly articulated, so we applied several learnings from other scans and devised a methodology for conducting an environmental scan using the mixed methods of internet search engines, internet-based community health databases, and member checking. We have carefully reported our methods, so that others conducting community health environmental scans may replicate our process. Furthermore, through this scan, we identified assorted respite care services and pinpointed needs in the provision of these services. The findings highlighted that more easily accessible and centralized information about respite care services is needed in Quebec. The data will enable the creation of a user-friendly tool to share with community support services across Quebec and ultimately help alleviate the added burden caregivers and clinicians face when looking for respite care services in fragmented and complex digital spaces.
PubMed: 38625735
DOI: 10.2196/53078 -
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 -
Hospital Pediatrics Dec 2023Families of children with medical complexity manage a multitude of care responsibilities that must be carefully coordinated alongside typical family roles and...
BACKGROUND AND OBJECTIVES
Families of children with medical complexity manage a multitude of care responsibilities that must be carefully coordinated alongside typical family roles and activities. Currently, little is known about this experience from the perspectives of caregivers; therefore, the purpose of this study was to explore the experience of caregiving for a child with medical complexity while identifying unmet medical and psychosocial needs.
METHODS
Nineteen caregivers were recruited from the pediatric complex care clinic at an academic medical center in the United States. Each participant completed an in-depth, narrative interview that was audio-recorded and transcribed; transcripts were analyzed using an inductive coding approach.
RESULTS
Participants described their caregiving experiences along 4 themes: (1) the many responsibilities of caregiving, (2) insufficient respite care and skilled support, (3) financial limitations and costs of care, and (4) challenges with mental health and wellbeing. Participants identified unmet needs in 6 dimensions: (1) transition stress, (2) communication across teams, (3) learning to be an advocate, (4) purposefully inclusive environments, (5) finding connections and community, and (6) the challenges of coronavirus disease 2019.
CONCLUSIONS
Caregivers of children with medical complexity identify a host of experiences and unmet needs that challenge the physical, emotional, and psychosocial wellbeing of themselves and their families. With more attention to the holistic experience of caregiving for this population, providers and teams can better anticipate needs and provide services and programs that enhance caregiver and family wellbeing simultaneously.
Topics: Humans; Child; United States; Caregivers; Mental Health; Ambulatory Care Facilities; Communication
PubMed: 37916264
DOI: 10.1542/hpeds.2022-007112 -
Arts & Health Oct 2023This original, qualitative study examines the ways in which the concept of is expressed and experienced through the activity of singing in refugee mothers, new and...
BACKGROUND
This original, qualitative study examines the ways in which the concept of is expressed and experienced through the activity of singing in refugee mothers, new and expectant, in a perinatal healthcare setting in Logan, Queensland.
METHODS
Data were collected using a multi-method approach using field notes, yarning circles, and semi-structured interviews. Reflexive Thematic Analysis (TA) yielded themes influenced also by literature on singing, wellbeing, health inequities, and the conceptual lens of respite.
RESULTS
The research found that singing afforded respite for mothers across four dimensions, allowing for safe spaces, me time, new direction, and immersion. Respite and singing are identified here as strength-based and cultural solutions to wellbeing. No negative effects were reported.
CONCLUSIONS
The article discusses implications for socially-mediated healthcare in culturally diverse contexts. The idea of "song" enables access to a space of sanctuary wherein health inequities can be tackled in meaningful and decolonising ways.
Topics: Pregnancy; Female; Humans; Parturition; Delivery of Health Care; Queensland; Qualitative Research
PubMed: 36512470
DOI: 10.1080/17533015.2022.2140684 -
Journal of Child and Adolescent... Nov 2023Children with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) experience sudden onset neuropsychiatric symptoms after infection or other triggers. Symptoms range...
Children with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) experience sudden onset neuropsychiatric symptoms after infection or other triggers. Symptoms range from mild to severe, potentially lasting days, weeks, months, or longer. Exacerbation-related functional decline presents in many aspects of daily life, generally accompanied by family stress and caregiver burden. We sought to investigate the relationship between severity of PANS symptoms and caregiver burden/stress and the relationship between severity of PANS symptoms and degree of caregiver/child cohesion. This cross-sectional online study surveyed caregivers recruited from PANS-related social media support sites. The Pediatric Acute Neuropsychiatric Symptom Scale - Parent Version (PNSS) measured current severity. Caregiver Burden Inventory (CBI) and Caregiver Self-Assessment Questionnaire (CSAQ) assessed caregiver burden/stress. Inclusion of Other in the Self (IOS) scale determined caregiver-perceived current and desired cohesion with their child(ren) with PANS. Of the 216 respondents 79.6% exceeded CBI threshold indicating need for respite in adult care receiver populations. On the CSAQ, 72.9% expressed high distress, 80.5% reported feeling overwhelmed, and 58.1% reported crying spells, meeting cutoffs for support/respite used in adult care receiver populations. Most caregivers reported not having the desired degree of cohesion with their child on the IOS (85.5%). Parents of children with more severe PNSS symptoms fared significantly worse on all measures (CBI: = 57.83; CSAQ: = 29.26; IOS: = 38.04; < 0.001 for all). Content analysis of comments revealed five themes: (1) severe caregiver and/or family emotional distress and trauma; (2) caregivers wondering what happened to their child; (3) lack of awareness and support among health and education professionals; (4) relationship strain with family, friends, and significant others; and (5) financial and/or legal struggles because of their child's diagnosis. There is strong need for support and respite for children with PANS and their families. Long-term effects including posttraumatic stress symptoms among family members should be studied.
Topics: Adult; Child; Humans; Caregivers; Caregiver Burden; Cross-Sectional Studies; Autoimmune Diseases
PubMed: 37966363
DOI: 10.1089/cap.2023.0030 -
Psychiatric Services (Washington, D.C.) Aug 2023Recent implementation of the nationwide 988 Suicide and Crisis Lifeline has expanded telephone-based mental health crisis services and created a unified framework for...
Recent implementation of the nationwide 988 Suicide and Crisis Lifeline has expanded telephone-based mental health crisis services and created a unified framework for crisis care in the United States. However, the infrastructure for the final step of the crisis continuum-an appropriate mental health service for persons in crisis to receive the care they need-is fragmented, unevenly distributed, underfunded, and understudied. Given the few options for individuals in crisis, most often inpatient psychiatric hospitals are the default option. In this Open Forum, the authors describe the scope of the problem and propose how clinicians, policy makers, and researchers can improve the availability of evidence-based disposition options for individuals in crisis.
Topics: Humans; United States; Crisis Intervention; Mental Disorders; Goals; Mental Health Services
PubMed: 36718601
DOI: 10.1176/appi.ps.20220503 -
Qualitative Health Research Aug 2023Behavioral and psychological symptoms of dementia (BPSD) pose great challenges for the caregivers during the evolution of the disease with impacts on patients,...
Behavioral and psychological symptoms of dementia (BPSD) pose great challenges for the caregivers during the evolution of the disease with impacts on patients, caregivers, and healthcare providers. Caregivers often remain very present and involved once the difficult decision has been made to relocate the person to a residential and long-term care center ( [CHSLD] in Quebec). The experience of caregivers about BPSD management in CHSLDs remains poorly understood. The aim of this study is to explore the needs and experience of caregivers of patients with BPSD living in CHSLDs, as well as the solutions they suggest to better manage BPSD in CHSLDs. We carried out this qualitative interpretive descriptive study with six focus groups, including 32 caregivers, in Quebec, Canada. Data analysis identified six themes: (1) the transition period between home and the CHSLD; (2) the lack of knowledge about BPSD; (3) the approach to BPSD by healthcare professionals; (4) the lack of communication; (5) defining the caregiver's role in the healthcare team; and (6) the caregiver's need for respite. These results offer relevant avenues to improve collaborative practices with caregivers in CHSLDs involved in the care of people with BPSD.
Topics: Humans; Caregivers; Long-Term Care; Health Personnel; Communication; Dementia
PubMed: 37271946
DOI: 10.1177/10497323231173854 -
PloS One 2023Adult Day care centres provide an important aspect of care provision through all phases of the dementia illness from diagnosis to the end of life (Dabelko HI 2008)... (Review)
Review
BACKGROUND
Adult Day care centres provide an important aspect of care provision through all phases of the dementia illness from diagnosis to the end of life (Dabelko HI 2008) supporting the well-being of both older people living with dementia and their care partners. Services within adult day care settings are designed to provide biopsychosocial health benefits to participants as well as care partner respite.
OBJECTIVE
To examine research studies, literature reviews and grey literature and identify and map the literature on psychosocial interventions used in day care services for older people living with dementia and chart their use, evaluation and outcomes. The research review question is "what are the psychosocial interventions used in day care service for older people living with dementia?" Psychosocial interventions are important non-pharmacological interventions which support people's wellbeing.
METHODS
Inclusion/Exclusion criteria were identified and guided the search strategy. Participants were people aged 60 years and over living with dementia attending day care services. The use of psychosocial interventions for this cohort was the focus of the review. Databases were searched (Cochrane Reviews, CINAHL, Embase, Medline EBSCO, Medline Ovid, Medline PubMed, PsycINFO, Scopus, Open Grey, Lenus and WHO Global Index Medicus databases) using keywords/terms with Boolean operators from 2011 to 2023. Rayyan was used to extract and manage the data.
RESULTS
The findings present a narrative and charting of the data from the 45 papers that met the review criteria, and this data is mapped onto the five objectives. Within this review, interventions were grouped into five broad types: nature (n = 6 papers), memory/cognitive (n = 11 papers), social (n = 17 papers), animal (n = 4 papers), or physical/sensory (n = 7 papers) based interventions.
CONCLUSIONS
This review has illustrated the wide variety in the types, range and facilitation of psychosocial interventions within adult day care services. This review highlights the potential benefits of these interventions. However, findings must be considered in the context that many were provided as brief intervention studies with little evidence of continuation after the study and further research is required given the complex and diverse range of interventions. Results will be of interest to practitioners planning to implement or evaluate psychosocial interventions used in day care services for older people living with dementia.
Topics: Humans; Middle Aged; Aged; Dementia; Psychosocial Intervention; Day Care, Medical
PubMed: 38079409
DOI: 10.1371/journal.pone.0295507