scholarly journals Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

2020 ◽  
Vol 34 (6) ◽  
pp. 731-775 ◽  
Author(s):  
Johanna Taylor ◽  
Alison Booth ◽  
Bryony Beresford ◽  
Bob Phillips ◽  
Kath Wright ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Mixed Methods ◽  
Young People ◽  
Current Evidence ◽  
Children And Young People ◽  
Factors Affecting ◽  
Paediatric Palliative Care ◽  
The Impact

Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim: To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. Design: A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). Data sources: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000–2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. Results: An evidence base of mainly low- and moderate-quality studies ( n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children’s symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. Conclusion: Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children’s views, and research is needed to determine whether specialist input improves quality of life.

Impact of COVID-19 on Mental Health of Palliative Care Professionals and Services: A Mixed-Methods Survey Study

2021 ◽  
pp. 104990912110570
Author(s):  
Wallace Chi Ho Chan ◽  
Raymond Kam Wing Woo ◽  
Denis Ka-Shaw Kwok ◽  
Clare Tsz Kiu Yu ◽  
Lawrence Man-Hon Chiu
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Palliative Care ◽  
Mixed Methods ◽  
Professional Quality Of Life ◽  
Care Services ◽  
Professional Quality ◽  
Palliative Care Services ◽  
The Impact

Introduction This study aimed to examine the mental health of palliative care professionals in Hong Kong during the COVID-19 pandemic, the relationship of mental health with socio-demographic factors, and the impact of the pandemic on palliative care services. Methods A total of 142 palliative care professionals in Hong Kong participated in an online survey. The questionnaire includes measurements on depression, anxiety, perceived stress, post-traumatic stress, professional quality of life, items that measure the effect of COVID-19 on palliative care services, and one open-ended question for describing how the services were affected. Descriptive and multivariate regression analyses were conducted. Quantitative and qualitative data about the impact of COVID-19 on palliative care services were analyzed and triangulated using a mixed-methods approach. Results Up to 82%, 43%, and 42% of the participants felt moderately to highly stressed, anxious, and depressed, respectively, during the pandemic. Younger participants tended to have poorer mental health and professional quality of life. Around 82% felt stressed when communicating with patients and family members under the no-visiting policy during the pandemic. More than three-quarters of participants showed lack of confidence in the anti-epidemic policy of the government. Qualitative findings identified 3 themes affecting the provision of palliative care: 1. the tightening of restrictions on visitors; 2. the limited provision of services; and 3. staff deployment. Conclusions Appropriate responses are required to give extra support to palliative care professionals during the pandemic and facilitate their coping with the impact of COVID-19 on the provision of palliative care.

Co-Design and Open Trial of Starship Rescue, a Cognitive Behavior Therapy, Biofeedback, and Game-Based eHealth Intervention to Treat Anxiety in Children and Young People with Long-Term Physical Conditions (Preprint)

2020 ◽  
Author(s):  
Hiran Thabrew ◽  
Karolina Stasiak ◽  
Harshali Kumar ◽  
Tarique Naseem ◽  
Christopher Frampton ◽  
...  
Keyword(s):  
Quality Of Life ◽  
New Zealand ◽  
Young People ◽  
Preliminary Evidence ◽  
Children And Young People ◽  
Physical Conditions ◽  
System Usability Scale ◽  
Ehealth Intervention

BACKGROUND Approximately 10% to 12% of New Zealand children and young people have long-term physical conditions (also known as chronic illnesses) and are more likely to develop psychological problems, particularly anxiety and depression. Delayed treatment leads to worse physical and mental healthcare, school absence, and poorer long-term outcomes. Recently, electronic health (eHealth) interventions, especially those based on the principles of Cognitive Behavior Therapy (CBT), have been shown to be as good as face-to-face therapy. Biofeedback techniques have also been shown to enhance relaxation during the treatment of anxiety. However, these modalities have rarely been combined. Young people with long-term physical conditions have expressed a preference for well-designed and technologically-based support to deal with psychological issues, especially anxiety. OBJECTIVE This study aimed to co-design and evaluate the (i) acceptability and (ii) usability of a CBT and biofeedback-based, 5-module eHealth game called ‘Starship Rescue’ and (iii) to provide preliminary evidence regarding its effectiveness in addressing anxiety and quality of life in young people with long-term physical conditions. METHODS Starship Rescue was co-designed with children and young people from a tertiary hospital in Auckland, New Zealand. Following this, 24 young people aged 10 to 17 years were enrolled in an open trial, during which they were asked to use the game for an 8-week period. Acceptability of the game to all participants was assessed using a brief, open-ended questionnaire, and more detailed feedback was obtained from a subset of 10 participants via semi-structured interviews. Usability was evaluated via the System Usability Scale (SUS) and device-recorded frequency and duration of access on completion of the game. Anxiety levels were measured prior to commencement, on completion of the game, and 3 months later using the Generalized Anxiety Disorder 7-item scale (GAD-7) and Spence Child Anxiety Scales (SCAS), and at the start of each module and at the end of the game using an embedded Likert/visual analog scale. Quality of life was measured prior to commencement and on completion of the game using the Pediatric Quality of Life Scale (PEDS-QL). RESULTS Users gave Starship Rescue an overall rating of 5.9 out of 10 (range 3-10 and a mean score of 71 out of 100 (SD 11.7; min 47.5; max 90) on the System Usability Scale (SUS). The mean time period for use of the game was just over 11-weeks (78.8 days, 13.5 hours, 40 minutes). Significant reductions in anxiety were noted between the start and end of the game on the GAD-7 (-4.6 (p=0.000)), SCAS (-9.6 (p=0.005)), and the Likert/visual analogue scales (-2.4 (p=0.001)). Quality of life also improved on the PedsQL scale (+4.3 (p=0.042)). All changes were sustained at 3-month follow-up. CONCLUSIONS This study provides preliminary evidence for Starship Rescue being an acceptable, usable and effective eHealth intervention for addressing anxiety in young people with long-term physical conditions. Further evaluation is planned via a more formal randomized controlled trial. CLINICALTRIAL Australian New Zealand Clinical Trials Network Registry (ANZCTR): ACTRN12616001253493p;https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371443 (Archived by WebCite at http://www.webcitation.org/6sYB716lf)

scholarly journals Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cerebral Palsy ◽  
Young People ◽  
General Population ◽  
Transition Period ◽  
Well Being ◽  
Personal Factors ◽  
The Impact

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

scholarly journals P121 The efficacy of treatment interventions on fatigue in adolescents with juvenile idiopathic arthritis: a literature review

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Sebastian Moshtael ◽  
Sonia Khanom ◽  
Janet E McDonagh
Keyword(s):  
Quality Of Life ◽  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Rating Scale ◽  
Outcome Measure ◽  
Therapeutic Interventions ◽  
Current Evidence ◽  
Original Research ◽  
Qualitative Synthesis

Abstract Background/Aims  Fatigue has been reported by young people and professionals alike as a major challenge for people living with juvenile idiopathic arthritis (JIA) . It remains unclear as to how therapeutic interventions impacts on this major symptom. The aim of this review was to determine the current evidence for the effectiveness of therapeutic interventions, non- pharmacological and pharmacological, on improving fatigue in adolescents with JIA. Methods  Three electronic databases (MEDLINE, EMBASE, PsycINFO) were searched from 2000 to Feb 2020; in addition to manual searches. Articles were eligible for inclusion if they (i) were original research papers, (ii) had fatigue as a primary outcome measure (iii) included adolescents (10-25 years) and (iv) were available in the English language. Results  Of the 3,142 records identified, 31 underwent full text assessment and 4 studies were included in the qualitative synthesis including 2 from the Netherlands, 1 Germany, and 1 from Canada. The total number of participants across the 4 studies was 824. Three were randomised controlled trials of nonpharmacological interventions and one was a cohort study from a national drug registry including older adolescents JIA (mean: 19-years). Measurement tools included the Paediatric Quality of life multidimensional fatigue scale, (2 studies), the Checklist for Individual Strength CIS-20 (1 study), a numeric rating scale (1 study). In one study a visual analogue scale for energy level was also utilised. In 2 studies baseline prevalence of fatigue was reported as 60% and 76% respectively. Significant reduction in fatigue was observed in all three nonpharmacological studies. In the registry study, fatigue was noted to be prevalent in spite of the disease being in inactive or minimally active on biologic therapy. In 3 studies the relationship between health-related quality of life and fatigue was highlighted and showed a decreased quality of life in fatigued young people. Conclusion  Fatigue is a significant problem in JIA during adolescence and influences quality of life. Improvements in fatigue with non-pharmacological interventions have been reported. However, at present, data is insufficient to conclusively decide which treatment intervention is most efficacious in treating fatigue in young people with JIA. Fatigue should be considered as an important outcome measure for the management of JIA in future evaluations of interventions. Disclosure  S. Moshtael: None. S. Khanom: None. J.E. McDonagh: None.

scholarly journals Housing with support for older people: a mixed-methods systematic review protocol

2020 ◽  
Vol 3 ◽  
pp. 64
Author(s):  
Camille Coyle ◽  
Sarah Buggy ◽  
Olivia Cagney ◽  
Louise Farragher ◽  
Caitriona Lee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Mixed Methods ◽  
Older People ◽  
Grey Literature ◽  
Qualitative And Quantitative ◽  
Ovid Medline ◽  
The Impact ◽  
People’S Perceptions

Background: The implementation of housing with support is rapidly expanding, particularly as life expectancy is increasing throughout the world. This expansion is likely to intensify in the context of coronavirus disease 2019 (COVID-19), which has revealed the risks of relying primarily on nursing homes. This mixed-methods systematic review aims to: 1) explore older people’s perceptions and experiences of housing with support and 2) examine the impact of providing housing with support for older people on their quality of life. Methods: The databases Ovid Medline, Ovid Social Policy & Practice, EBSCO CINAHL, and EBSCO SOCIndex will be searched, and grey literature will also be identified. Quality assessment will be carried out using Joanna Briggs Institute’s Critical Appraisal Checklist for Qualitative Research as well as a tool from the National Institutes of Health for observational cohort studies. This review will employ convergent parallel design; as such, qualitative and quantitative findings will be synthesised separately in the initial stage of analysis. The results from the qualitative and quantitative syntheses will then be integrated in the final stage of the analysis. Conclusion: This systematic review will synthesise the evidence regarding older people’s perceptions and experiences of housing with support and the impact of providing housing with support for older people on their quality of life.

scholarly journals Healing at the End of Life: The Voice of the Patient

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Cory Ingram
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Lived Experience ◽  
End Of Life ◽  
Life Story ◽  
Patient Centered ◽  
Whole Person ◽  
Centered Care ◽  
The Impact

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.

scholarly journals The impact of the livelihoods and income fortification and socio-civic transformation project on the quality of life, wellbeing, self-esteem, and quality of neighbourhood social environment among the youth in slum areas of in Kampala, Uganda

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Andre M. N. Renzaho ◽  
Daniel Doh ◽  
Rashidul A. Mahumud ◽  
Moses Galukande ◽  
Joseph K. Kamara
Keyword(s):  
Quality Of Life ◽  
Young People ◽  
Social Environment ◽  
Self Esteem ◽  
Living Conditions ◽  
Psychological Wellbeing ◽  
Point Increase ◽  
The Impact ◽  
Slum Areas

Abstract Background Various interventions to improve the quality of life (QoL) among slum dwellers across sub Saharan Africa have been implemented. However, the interventions impacts remain less understood. We assessed the impact of the Urban Program on Livelihoods and Income Fortification and Socio-civic Transformation (UPLIFT) project on QoL, psychological wellbeing, self-esteem, and the quality of neighbourhood social environment of young people aged 13–25 years in slum areas of Makindye and Nakawa Divisions in Kampala, Uganda. Methods The study was designed as a mixed method evaluation using repeated cross-sectional survey and grounded theory in both the intervention and comparison communities. The intervention effect was estimated using the difference-in-differences Kernel propensity-score matching technique, with bootstrapping. The “rcs” option was used given that data were from repeated cross-sectional surveys. A thematic analysis was adopted for the qualitative data to triangulate and complement the quantitative data. Results The UPLIFT project led to an improvement in QoL, psychological wellbeing, and self-esteem of young people. In terms of QoL, the project led to a six-percentage point increase in quality of living conditions scores (where higher scores reflect better living conditions; lower ones, worse living conditions). However, a negative effect was observed for personal independence whilst the project did not have any impact on social relations. In terms of self-esteem and psychological wellbeing, the project led to a 4.6-point increase in self-esteem scores, a 5.4-point increase in self-acceptance scores, a 5.3- point increase in purpose in life scores, a 5.7 - point increase in personal growth, and a 10.7-point increase in autonomy scores. However, the project had a negative effect on personal independence; and had no impact on environmental mastery and the quality of neighbourhood social environment. Conclusion Functional community-owned assets accumulation and capacity building initiatives for young people in slum areas improved their psychological wellbeing and quality of life. However, such initiatives do not appear to address social relationships and personal independence of young people in slum areas.

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