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Palliative Medicine Jan 2024Siblings of children requiring palliative care are often forgotten and overlooked, as the focus tends to be on the ill child and their parents. Limited knowledge of... (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
Siblings of children requiring palliative care are often forgotten and overlooked, as the focus tends to be on the ill child and their parents. Limited knowledge of non-bereaved siblings' perspectives makes it challenging to provide appropriate support for them. A review of existing literature is thus needed to better understand the experiences of these siblings and to identify research gaps that may require further examination.
AIM
To consolidate the available qualitative evidence on the perspectives of non-bereaved healthy siblings regarding paediatric palliative care.
DESIGN
A qualitative systematic review using a meta-synthesis approach was conducted.
DATA SOURCES
Six electronic databases (PubMed, CINAHL, PsycINFO, Embase, Scopus and ProQuest Dissertations and Theses Global) were searched from each database's inception date until October 2022. The search included qualitative and mixed-method studies that reported the perceptions and associations of siblings of patients receiving paediatric palliative care. Data were synthesised using thematic analysis.
RESULTS
Eleven studies were included. The overarching theme of the review would be 'A walking shadow: Living in the darkness shaped by the dying sibling', and three key themes and nine subthemes were identified from the included articles: (1) Changing family dynamics; (2) Impact on school and socialisation and (3) Psychological impact and coping.
CONCLUSION
Siblings demonstrated negative psychological impacts and were affected by changing family structure and relationships. However, socialisation with society, and varied coping skills such as cognitive coping and using distraction techniques, were significant for siblings to go through this journey and even led to some positive outcomes for them.
Topics: Child; Humans; Coping Skills; Family Relations; Health Status; Palliative Care; Qualitative Research; Siblings
PubMed: 38087809
DOI: 10.1177/02692163231217597 -
Perioperative opioids and survival outcomes in resectable head and neck cancer: A systematic review.Cancer Medicine Sep 2023Opioids are a mainstay in pain control for oncologic surgery. The objective of this systematic review is to evaluate the associations of perioperative opioid use with... (Review)
Review
BACKGROUND
Opioids are a mainstay in pain control for oncologic surgery. The objective of this systematic review is to evaluate the associations of perioperative opioid use with overall survival (OS) and disease-free survival (DFS) in patients with resectable head and neck cancer (HNC).
METHODS
A systematic review of PubMed, SCOPUS, and CINAHL between 2000 and 2022 was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies investigating perioperative opioid use for patients with HNC undergoing surgical resection and its association with OS and DFS were included.
RESULTS
Three thousand three hundred seventy-eight studies met initial inclusion criteria, and three studies representing 562 patients (intraoperative opioids, n = 463; postoperative opioids, n = 99) met final exclusion criteria. One study identified that high intraoperative opioid requirement in oral cancer surgery was associated with decreased OS (HR = 1.77, 95% CI 0.995-3.149) but was not an independent predictor of decreased DFS. Another study found that increased intraoperative opioid requirements in treating laryngeal cancer was demonstrated to have a weak but statistically significant inverse relationship with DFS (HR = 1.001, p = 0.02) and OS (HR = 1.001, p = 0.02). The last study identified that patients with chronic opioid after resection of oral cavity cancer had decreased DFS (HR = 2.7, 95% CI 1.1-6.6) compared to those who were not chronically using opioids postoperatively.
CONCLUSION
An association may exist between perioperative opioid use and OS and DFS in patients with resectable HNC. Additional investigation is required to further delineate this relationship and promote appropriate stewardship of opioid use with adjunctive nonopioid analgesic regimens.
PubMed: 37706634
DOI: 10.1002/cam4.6524 -
Supportive Care in Cancer : Official... Nov 2023Potentially inappropriate end-of-life cancer care (e.g., frequent hospital admission and emergency room visits in the last month of life) is known to be associated with... (Review)
Review
PURPOSE
Potentially inappropriate end-of-life cancer care (e.g., frequent hospital admission and emergency room visits in the last month of life) is known to be associated with a poorer quality of life of patients, but research on its association with the well-being of relatives is scarce. The aim of this systematic literature review was to evaluate the association between potentially inappropriate end-of-life cancer care and relatives' well-being.
METHODS
We conducted a systematic search and review, and reported according to the PRISMA guideline, on the association between potentially inappropriate end-of-life cancer care and well-being of relatives before and after the death of their loved one. Pubmed, PsycInfo, Embase, and CINAHL were searched for studies published from January 2000 to July 2022. Studies' quality was assessed using the Critical Appraisal Checklists from the Joanne Briggs Institute (JBI).
RESULTS
We identified eight studies including 10,062 relatives (59-79% female, mean age 46-61 years, 29-72% partner). Potentially inappropriate end-of-life cancer care was associated with poorer well-being of relatives including lower quality of life, higher burden of depressive symptoms, more regret, and more feelings of unpreparedness for the patient's death.
CONCLUSION
Potentially inappropriate cancer care at the end-of-life is associated with poorer well-being of relatives before and after the death of their loved one. This emphasizes the importance of avoiding potentially inappropriate end-of-life cancer care, as it is both associated with poorer outcomes for relatives and patients. However, the number of studies examining this association is small, and more research is needed in this area.
Topics: Humans; Female; Middle Aged; Male; Quality of Life; Terminal Care; Checklist; Emergency Service, Hospital; Death
PubMed: 38055062
DOI: 10.1007/s00520-023-08198-0 -
Molecular Autism Jul 2023Septo-optic dysplasia (SOD) is a rare condition diagnosed in children with two or more of the following: hypopituitarism, midline brain abnormalities, and optic nerve... (Review)
Review
BACKGROUND
Septo-optic dysplasia (SOD) is a rare condition diagnosed in children with two or more of the following: hypopituitarism, midline brain abnormalities, and optic nerve hypoplasia. Children with SOD experience varied visual impairment and endocrine dysfunction. Autistic-like behaviours have been reported; however, their nature and prevalence remain to be fully understood. The present systematic review aimed to explore the type and prevalence of neurodevelopmental impairments in children with SOD spectrum conditions.
METHODS
The search was conducted in PubMed, EMBASE, and PsycInfo. Hand-searching reference lists of included studies was conducted. All peer-reviewed, observational studies assessing behavioural and cognitive impairments or autism spectrum disorder (ASD) symptoms in children (< 18 years) with SOD, optic nerve hypoplasia, and SOD-plus were included. Studies were excluded if they did not report standardised measures of neurodevelopmental impairments or ASD outcomes.
RESULTS
From 2132 screened articles, 20 articles reporting data from a total of 479 children were included in prevalence estimates. Of 14 studies assessing cognitive-developmental outcomes, 175 of 336 (52%) children presented with intellectual disability or developmental delay. A diagnosis of ASD or clinical level of symptoms was observed in 65 of 187 (35%) children across five studies. Only five studies assessed for dysfunction across behavioural, emotional, or social domains and reported impairments in 88 of 184 (48%) of children assessed.
LIMITATIONS
Importantly, high heterogeneity among the samples in relation to their neuroanatomical, endocrine, and optic nerve involvement meant that it was not possible to statistically assess the relative contribution of these confounding factors to the specific neurodevelopmental phenotype. This was further limited by the variation in study designs and behavioural assessments used across the included studies, which may have increased the risk of information bias.
CONCLUSIONS
This systematic review suggests that the prevalence of neurodevelopmental impairments in children within the SOD spectrum may be high. Clinicians should therefore consider including formal assessments of ASD symptoms and neurodevelopmental impairments alongside routine care. There is, additionally, a need for further research to define and validate a standardised battery of tools that accurately identify neurodevelopmental impairments in SOD spectrum conditions, and for research to identify the likely causal mechanisms.
Topics: Humans; Septo-Optic Dysplasia; Autism Spectrum Disorder; Optic Nerve Hypoplasia; Hypopituitarism; Autistic Disorder
PubMed: 37491272
DOI: 10.1186/s13229-023-00559-0 -
Journal of Hospice and Palliative... Feb 2024This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and... (Review)
Review
This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases (PubMed, Cochrane, CINAHL, Research Information Sharing Service, and Korean Studies Information Service System) were searched to identify relevant articles published between 2011 and 2020. From the systematic search and review process, 13 studies that met the eligibility criteria were selected for the analysis. From the literature review, 2 key principles were found to facilitate neonatal palliative care: family-centered care and integrative care in the neonatal intensive care unit. In addition, the themes found in this review included (1) providing comfortable care to dying infants with respect to infants and offering parents choices, (2) therapeutic communication, (3) support with respect, and (4) bereavement care for parents of dying infants in the neonatal intensive care unit. Caregivers require effective communication, manpower support, emotional support, educational programs, and well-defined protocols. The evidence mapped and synthesized in this review indicates the need to facilitate the provision of palliative care in the neonatal intensive care unit in line with the unique needs of infants, parents, and nurses.
Topics: Humans; Infant; Infant, Newborn; Hospice Care; Intensive Care Units, Neonatal; Nursing Care; Palliative Care; Parents
PubMed: 38134344
DOI: 10.1097/NJH.0000000000000985 -
Health Communication Jan 2024Communication is an integral component in palliative care. A number of studies have used conversation analysis (CA) to examine communication between healthcare...
Communication is an integral component in palliative care. A number of studies have used conversation analysis (CA) to examine communication between healthcare professionals (HCPs) and patients/companions in palliative care. To the best of our knowledge, however, no work has been done to synthesize these studies. Thus, the review aimed to synthesize these conversation analytic studies in the setting of palliative care. The review included peer-reviewed studies that focused on communication between HCPs and patients/companions and that were published in English before September 10 2022. The database and manual search produced 16 eligible studies. The thematic analysis generated five themes: (1) promoting patient agency and autonomy; (2) practices for gathering pain-related information and navigating pain concerns (practices for gathering pain-related information and practices for navigating patients' pain concerns); (3) initiating and managing end-of-life discussions; (4) facilitating shared decision making in palliative care; and (5) navigating sensitive topics and uncertainty in prognostic talk. The review highlighted the potential of CA for research in palliative care and had implications for communication practice.
PubMed: 38166606
DOI: 10.1080/10410236.2023.2301202 -
JAMA Otolaryngology-- Head & Neck... Aug 2023Head and neck cancer-associated lymphedema (HNCaL) affects up to 90% of survivors of head and neck cancer and is a substantial contributor to disability following head...
IMPORTANCE
Head and neck cancer-associated lymphedema (HNCaL) affects up to 90% of survivors of head and neck cancer and is a substantial contributor to disability following head and neck cancer treatment. Despite the prevalence and morbidity associated with HNCaL, rehabilitation interventions are not well studied.
OBJECTIVE
To identify and appraise the current evidence for rehabilitation interventions in HNCaL.
EVIDENCE REVIEW
Five electronic databases were searched systematically from inception to January 3, 2023, for studies on HNCaL rehabilitation interventions. Study screening, data extraction, quality rating, and risk of bias assessment were performed by 2 independent reviewers.
FINDINGS
Of 1642 citations identified, 23 studies (1.4%; n = 2147 patients) were eligible for inclusion. Six studies (26.1%) were randomized clinical trials (RCTs) and 17 (73.9%) were observational studies. Five of the 6 RCTs were published during 2020 to 2022. Most studies had fewer than 50 participants (5 of 6 RCTs; 13 of 17 observational studies). Studies were categorized by intervention type, including standard lymphedema therapy (11 studies [47.8%]) and adjunct therapy (12 studies [52.2%]). Lymphedema therapy interventions included standard complete decongestive therapy (CDT) (2 RCTs, 5 observational studies), modified CDT (3 observational studies), therapy setting (1 RCT, 2 observational studies), adherence (2 observational studies), early manual lymphatic drainage (1 RCT), and inclusion of focused exercise (1 RCT). Adjunct therapy interventions included advanced pneumatic compression devices (APCDs) (1 RCT, 5 observational studies), kinesio taping (1 RCT), photobiomodulation (1 observational study), acupuncture/moxibustion (1 observational study), and sodium selenite (1 RCT, 2 observational studies). Serious adverse events were either not found (9 [39.1%]) or not reported (14 [60.9%]). Low-quality evidence suggested the benefit of standard lymphedema therapy, particularly in the outpatient setting and with at least partial adherence. High-quality evidence was found for adjunct therapy with kinesio taping. Low-quality evidence also suggested that APCDs may be beneficial.
CONCLUSIONS AND RELEVANCE
The results of this systematic review suggest that rehabilitation interventions for HNCaL, including standard lymphedema therapy with kinesio taping and APCDs, appear to be safe and beneficial. However, more prospective, controlled, and adequately powered studies are needed to clarify the ideal type, timing, duration, and intensity of lymphedema therapy components before treatment guidelines can be established.
Topics: Humans; Lymphedema; Head and Neck Neoplasms; Exercise; Survivors; Observational Studies as Topic
PubMed: 37382963
DOI: 10.1001/jamaoto.2023.1473 -
Journal of Palliative Medicine Nov 2023The benefits of palliative care programs are well documented. However, the effectiveness of specialist palliative care services is not well established. The previous... (Review)
Review
Systematic Review of Models of Effective Community Specialist Palliative Care Services for Evidence of Improved Patient-Related Outcomes, Equity, Integration, and Health Service Utilization.
The benefits of palliative care programs are well documented. However, the effectiveness of specialist palliative care services is not well established. The previous lack of consensus on criteria for defining and characterizing models of care has restrained direct comparison between these models and limited the evidence base to inform policy makers. A rapid review for studies published up to 2012 was unable to find an effective model. To identify effective models of community specialist palliative care services. A mixed-method synthesis design reported according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting guidelines. Prospero: CRD42020151840. Data sources: Medline, PubMed, EMBASE, CINAHL and the Cochrane Database of Systematic Reviews were searched in September 2019 for primary research and review articles from 2012 to 2019. Supplementary search was conducted on Google in 2020 for policy documents to identify additional relevant studies. The search yielded 2255 articles; 36 articles satisfied the eligibility criteria and 6 additional articles were identified from other sources. Eight systematic reviews and 34 primary studies were identified: observational studies ( = 24), randomized controlled trials ( = 5), and qualitative studies ( = 5). Community specialist palliative care was found to improve symptom burden/quality of life and to reduce secondary service utilization across cancer and noncancer diagnoses. Much of this evidence relates to face-to-face care in home-based settings with both round-the-clock and episodic care. There were few studies addressing pediatric populations or minority groups. Findings from qualitative studies revealed that care coordination, provision of practical help, after-hours support, and medical crisis management were some of the factors contributing to patients' and caregivers' positive experience. Strong evidence exists for community specialist palliative care to improve quality of life and reducing secondary service utilization. Future research should focus on equity outcomes and the interface between generalist and specialist care.
Topics: Child; Humans; Palliative Care; Quality of Life; Caregivers; Neoplasms; Hospice and Palliative Care Nursing
PubMed: 37366688
DOI: 10.1089/jpm.2022.0461 -
BMJ Supportive & Palliative Care Dec 2023Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and...
BACKGROUND
Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood.
OBJECTIVES
To identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care.
METHODS
A systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text.
RESULTS
After full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other's preferences for care. Patients' advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers.
CONCLUSIONS
Patients and family caregivers in palliative care can accommodate each other's preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.
Topics: Humans; Palliative Care; Caregivers; Decision Making; Terminal Care; Hospice Care
PubMed: 35318213
DOI: 10.1136/bmjspcare-2022-003525 -
Palliative Medicine Apr 2024Seizures are an important palliative symptom, the management of which can be complicated by patients' capacity to swallow oral medications. In this setting, and the wish...
BACKGROUND
Seizures are an important palliative symptom, the management of which can be complicated by patients' capacity to swallow oral medications. In this setting, and the wish to avoid intravenous access, subcutaneous infusions may be employed. Options for antiseizure medications that can be provided subcutaneously may be limited. Subcutaneous sodium valproate may be an additional management strategy.
AIM
To evaluate the published experience of subcutaneous valproate use in palliative care, namely with respect to effectiveness and tolerability.
DESIGN
A systematic review was registered (PROSPERO CRD42023453427), conducted and reported according to PRISMA reporting guidelines.
DATA SOURCES
The databases PubMed, EMBASE and Scopus were searched for publications until August 11, 2023.
RESULTS
The searches returned 429 results, of which six fulfilled inclusion criteria. Case series were the most common study design, and most studies included <10 individuals who received subcutaneous sodium valproate. There were three studies that presented results on the utility of subcutaneous sodium valproate for seizure control, which described it to be an effective strategy. One study also described it as an effective treatment for neuropathic pain. The doses were often based on presumed 1:1 oral to subcutaneous conversion ratios. Only one study described a local site adverse reaction, which resolved with a change of administration site.
CONCLUSIONS
There are limited data on the use of subcutaneous sodium valproate in palliative care. However, palliative symptoms for which subcutaneous sodium valproate have been used successfully are seizures and neuropathic pain. The available data have described few adverse effects, supporting its use with an appropriate degree of caution.
Topics: Humans; Valproic Acid; Palliative Care; Seizures; Neuralgia
PubMed: 38444061
DOI: 10.1177/02692163241234597