Background
Children with cancer were designated as clinically extremely vulnerable if they were to contract SARS‐CoV‐2 due to immune suppression in the early phase of the COVID‐19 pandemic. Our aim ...was to explore experiences, information and support needs, and decision making of parents with a child with cancer in response to this phase in the United Kingdom.
Methods
Parents of a child with cancer completed a survey at a time when the UK moved into a period of ‘lockdown’. An online survey was developed by the research team to capture parents’ experiences, information and support needs, and decision making, using closed statements and open text boxes. Descriptive quantitative analyses and qualitative thematic content analysis were undertaken.
Findings
One hundred seventy‐one parents/caregivers completed the survey. Eighty‐five percent were worried about the virus and they were vigilant about the virus (92%) or cancer symptoms (93.4%). For two‐thirds (69.6%), hospital was no longer considered a safe place. Eight overarching themes were identified related to the virus: (a) risk of infection; (b) information, guidance and advice; (c) health care provision; (d) fears and anxieties; or related to lockdown/isolation: (e) psychological and social impact; (f) keeping safe under lockdown; (g) provisions and dependence; and (h) employment and income.
Conclusions
This is the first study, to the best of our knowledge, to report experiences of parents of a child with cancer during the SARS‐CoV‐2/COVID‐19 pandemic. The majority of parents were worried about SARS‐CoV‐2 and transmitting the virus to their child. Hospital was no longer perceived to be a safe place, and parents were worried about suboptimal cancer care. Parents described fear and anxiety and the psychological, social and economic impact of isolation.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
Abstract Context Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems. Objectives To explore ...parents' perceptions of the interaction with health care professionals (communication, continuity of care, and parental involvement) and symptom management during the pediatric palliative phase, and to investigate the influence on long-term grief in parents who lost a child to cancer. Methods A total of 89 parents of 57 children who died of cancer between 2000 and 2004 participated in this retrospective cross-sectional study by completing a set of questionnaires measuring grief (Inventory of Traumatic Grief), parents' perceptions of the interaction with health care professionals (communication, continuity of care, and parental involvement), and symptom management during the palliative phase. Care was assessed on a five point Likert scale (1 = disagree and 5 = agree). Results Parents highly rated communication (4.6 ± 0.6), continuity of care (4.3 ± 0.6), and parental involvement (4.6 ± 0.7) during the palliative phase. Parents' most often reported physical and psychological symptoms of their child during the palliative phase were fatigue (75%), pain (74%), anxiety to be alone (52%), and anger (48%). Higher ratings of parents on communication (β = −9.08, P = 0.03) and continuity of care (β = −11.74, P = 0.01) were associated with lower levels of long-term parental grief. The severity of the child's dyspnea (β = 2.96, P = 0.05), anxiety to be alone (β = 4.52, P < 0.01), anxiety about the future (β = 5.02, P < 0.01), anger (β = 4.90, P < 0.01), and uncontrolled pain (β = 6.60, P < 0.01) were associated with higher levels of long-term parental grief. Multivariate models combining the interaction with health care professionals and symptom management showed a significant influence of both aspects on long-term parental grief. Conclusion Both interaction with health care professionals, especially communication and continuity of care, and symptom management in children dying of cancer are associated with long-term parental grief levels.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Surviving childhood cancer and surviving cancer in adolescence or young adulthood may present with psychosocial similarities and differences. A clearer delineation for these 2 groups is warranted.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
Cancer registries in Nigeria, as well as in other sub-Saharan African countries, face challenges in adhering to international cancer registration standards. We aimed to improve cancer incidence ...estimation by identifying under-reporting of new cancers through matching patient-reported local government areas (LGAs) in Edo state, Nigeria, to their respective catchment populations.
Information on cancers was obtained from records of hospitals, medical clinics, pathology laboratories, and death certificates according to IARC guidelines. We utilized normalized scores to establish consistency in the number of cancers by calendar time, and standardized incidence ratios (SIR) to assess the variation in cancer incidence across LGAs compared to Edo state average. Subsequently, we estimated sex- and site-specific annual incidence using the average number of cancers from 2016 to 2018 and the predicted mid-year population in three LGAs. Age-standardization was performed using the direct method with the World Standard Population of 1966.
The number of incident cancers consistent between 2016-2018 in Egor, Oredo, and Uhunmwonde showed a significantly increased SIR. From 2016 to 2018 in these three LGAs, 1,045 new cancers were reported, with 453 (42.4%) in males and 592 (57.6%) in females. The average annual age-standardized incidence rate (ASR) was 50.6 (95% CI: 45.2 - 56.6) per 10
. In men, the highest incidence was prostate cancer (ASR: 22.4 per 10
), and in women, it was breast cancer (ASR: 16.5 per 10
), and cervical cancer (ASR: 12.0 per 10
). Microscopically verified cancers accounted for 98.1%.
We found lower age-standardized incidence rates than those reported earlier for the Edo state population. Collecting information on the local government areas of the cancers allows better matching with the respective target population. We recommend using LGA information to improve the evaluation of population-based cancer incidence in sub-Saharan countries.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
The advent of new cancer therapies, alongside expected growth and ageing of the population, better survival rates and associated costs of care, is uncovering a need to more clearly define and ...integrate supportive care services across the whole spectrum of the disease. The current focus of cancer care is on initial diagnosis and treatment, and end of life care. The Multinational Association of Supportive Care in Cancer defines supportive care as ‘the prevention and management of the adverse effects of cancer and its treatment’. This encompasses the entire cancer journey, and necessitates involvement and integration of most clinical specialties. Optimal supportive care can assist in accurate diagnosis and management, and ultimately improve outcomes. A national strategy to implement supportive care is needed to acknowledge evolving oncology practice, changing disease patterns and the changing patient demographic.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Objective To investigate the rationale and consequences associated with a parent's decision to discuss death with a child with incurable cancer. Study design We present data from a larger ...retrospective study involving bereaved parents of a child who died of cancer. Parents were asked whether they had discussed the impending death with their child, whether they reflected on this discussion positively, their reasons for not discussing death with their child, and the manner in which the conversation regarding death occurred. The data were analyzed qualitatively using a framework approach. Results Of the 86 parents of 56 children who answered the questions regarding discussing death with their child, 55 parents of 35 children did not discuss the impending death with their child. The following themes were identified: the parents' inability to discuss the impending death; the parents' desire to protect their child; views regarding talking with children; parents' views of child characteristics; the child's unwillingness to discuss the subject; lack of opportunity to talk; and the child's disability. The parents who did discuss death with their child generally used symbolic and/or religious narratives, or they had brief, direct conversations regarding death. The majority of parents felt positive regarding their decision about whether to talk with their child about his/her impending death. Conclusion Most parents in this study cited several reasons for not discussing death with their child. Our findings highlight the sensitive and complex issues surrounding these conversations, indicating that there may be a role for clinicians in supporting parents.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK
Objective
Surgery for paediatric cancer presents many stresses on patients and families. The authors aimed to understand the long‐term impact of childhood cancer surgery on survivors and parents.
...Methods
The study recruited participants from 11 Australia/New Zealand hospitals for telephone interviews. The authors used descriptive statistics to analyse participants’ quantitative distress ratings and conducted thematic analysis of shared surgical experiences and needs.
Results
Of 32 participants (n = 17 survivors, n = 15 parents), survivors’ mean age at surgery was 6.9 (SD = 5.17) and parents’ children were 2.1 years old (SD = 1.41) at time of surgery. Survivors had surgery on average 15.2 years ago (SD = 6.72) and parents’ children 11.5 years ago (SD = 3.94). Parents and survivors rated surgery as highly distressing. Pre‐operatively, survivors recalled experiencing fear and pain mainly associated with pre‐operative procedures. Post‐operatively, survivors reported immobility and some lasting behavioural disturbances. Parents described pre‐ and intra‐operative anxiety and stress and some lasting post‐operative psychological disturbances. Experiences appeared to improve with clear/consistent communication from hospital staff, proximity to hospital, and with support for parents and children post‐operatively.
Conclusions
Surgical treatment for childhood cancer can have a lasting impact for survivors and parents. Better information provision may improve families’ surgical experience whilst reducing anxiety, distress and physical discomfort.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
The coronavirus disease 2019 pandemic emphasised the importance of laboratory preparedness, including molecular diagnostic capacity, in the control of infectious disease outbreaks. This article ...reflects on diagnostic capacity-building opportunities presented by the pandemic, the challenges experienced along the way and the lessons learned from the perspective of a university teaching hospital in Southern Nigeria. We advocate for these lessons to inform strategic planning for laboratory preparedness at subnational, national and continental levels.
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GEOZS, NUK, OILJ, SBCE, SBJE, UL, UM, UPUK
Objectives: To assess the knowledge and acceptability of COVID-19 vaccines among HCWs.Design: A descriptive cross-sectional study was conducted in March 2021 among eligible HCWs using a ...self-administered questionnaire.Setting: The study was conducted in a southern Nigerian tertiary hospital.Participants: All HCWs not on annual or study leave were eligible to participate. The number of HCWs in each occupational category was determined by proportional allocation. HCWs were selected by stratified sampling technique.Main outcome measures: Knowledge of COVID-19 vaccines was assessed using 25 questions. The minimum and maximum scores were 0 and 25, respectively. Scores were converted to percentages. Scores of 50% and above were rated as good knowledge. Participants were also asked if they were willing to receive the vaccine.Results: The mean age of 512 participating HCWs was 33.4±7.8 with an M:F ratio of 1:1.1. Overall, 399 (76.6%) had good knowledge. Occupation and exposure to COVID-19 were predictors of knowledge. Three hundred and twenty eight respondents (63.0%) were willing to take the vaccine. Predictors of willingness to accept vaccination were age, sex, number of years in employment and knowledge about the vaccines (p< 0.05).Conclusions: Most HCWs had good knowledge and were disposed to accepting the COVID-19 vaccine. Educational interventions are necessary to improve HCWs knowledge as they may provide vaccine-related information to the general public.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Background
A significant proportion of hospital deaths occur in intensive care units (ICU) and often follow a decision to limit or withdraw life‐sustaining treatment. Facilitating the preferred ...choice in place of death for babies/children is increasingly being advocated, although the literature on a home death is often limited to case reports.
Aims and objectives
To examine (a) health care professionals' (HCPs) views and experience of transferring babies/children home to die from intensive care, (b) patient clinical characteristics that HCPs would consider transferring home and (c) barriers to transferring home.
Design
A cross‐sectional descriptive web‐based survey.
Methods
A total of 900 HCPs from paediatric and neonatal ICU across the United Kingdom were invited to participate.
Results
A total of 191 (22%) respondents completed the survey; 135 (70.7%) reported being involved in transferring home to die. However, most (58.4%) had just transferred one or two patients in the last 3 years. Overall, respondents held positive views towards transfer, although there was some evidence of divided opinion. Patients identified as unsuitable for transfer included unstable patients (57.6%) and those in need of cardiovascular support (56%). There was statistically significant difference in views between those with and without experience, in that those with experience had more positive views. The most significant barrier was the lack of access to care in the community.
Conclusions
HCPs view the concept of transferring critically ill babies/children home to die positively but have infrequent experience. Views held about transfers are influenced by previous experience. The clinical instability of patients and access to community care are central to decision‐making.
Relevance to clinical practice
A home death for critically ill babies/children is occurring in the United Kingdom but infrequently. Experience of a transfer home positively influences views and increases confidence. Improved multi‐organizational collaboration between ICU and community care teams would assist decision‐making and facilitation for a transfer home.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK, VSZLJ
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