Background
Adolescents’ psychosocial development is generally influenced by their peers. Those facing hospital‐based cancer treatment are particularly challenged as they are isolated from their ...social network and lack sufficient coping resources.
Aim
This study explores the adolescent cancer survivor's perceptions and experiences with healthy classmate socialization support efforts via hospital co‐admittance, from diagnosis to reinstatement in school, as an intervention of the RESPECT (REhabilitation including Social and Physical Activity and Education in Children and Teenagers with cancer) Study.
Design
A phenomenological, descriptive study.
Methods
Using variation sampling, 14 adolescents (aged 14–19), who completed the RESPECT intervention (April 2016–July 2017), participated in qualitative, in‐depth, semi‐structured interviews that were thematically analysed.
Findings
Four themes emerged: (a) Ambassadors as liaison persons; (b) Ambassadors as promoters of normalization and identity continuity; (c) Ambassadors as ‘behind the scenes’ friends; and (d) feelings of vulnerability and inferiority. Ambassadors reinstated a sense of normalcy in the adolescents’ daily life. They supported identity construction and served as liaison persons who buffered loneliness and social isolation as well as bridging a continued sense of belonging to one's school peer network. In contrast with other peers, ambassadors understood cancer‐related issues, knowledge which they partially gained witnessing the impact of treatment‐related side effects on their hospitalized classmates. However, the consequence of this trade‐off was an asymmetry in their relationship, with the adolescents requiring a certain level of safeguard from their ambassadors to maintain equal power in the relationship.
Conclusion
The ambassadors enhanced the adolescents’ ability to cope with their altered social position during treatment and to psychosocially reinstate it on their return to school.
Impact
Future interventions should offer opportunities for healthy peers to be educated in what it means to live with cancer. Future programs to sustain socialization in adolescents with cancer should involve healthy peers for the entirety of the treatment period.
摘要
背景
通常而言, 青少年的社会心理发展会受到同龄人的影响。医院内部接受抗癌治疗的患者面临高度挑战, 原因在于, 其远离社交网络, 应对资源不足。
目的
本研究探讨青少年癌症生还者从诊断到复学的过程中, 透过同期入院的健康同学提供的社会化支持而获得的认知与经验, 并将此作为癌症儿童和青少年的康复, 包括社交、体育活动及教育 (RESPECT) 研究的一项干预措施。
设计
一项现象学及描述性研究。
方法
变异抽样, 筛选14名完成RESPECT干预 (2016年4月‐2017年7月) 的青少年 (14‐19岁) 参与定性、深入、半结构化访谈, 并进行主题分析。
调查结果
共产生四大主题: (a) 大使作为联系人; (b) 大使作为生活常态恢复和身份持续性的推动者; (c) 大使作为“幕后”友人; 以及 (d) 脆弱和自卑感。大使确保青少年日常生活恢复常态。其支持身份建构, 充当联系人, 为孤独感和社会孤立感的来袭提供缓冲, 并建立对校园内同龄人的持续归属感。相比其他同龄人, 大使更了解癌症相关问题, 并目睹治疗相关副作用对住院同学的影响。然而, 这种权衡致使关系不对等, 青少年需要大使给与一定程度的保护, 以便维持平等关系。
结论
大使提高了青少年在治疗期间应对社会地位改变的能力, 并在其重返学校后对其心理社会地位进行恢复。
影响
未来, 应采取干预措施, 以便为健康同龄人提供机会, 帮助其了解癌症意味着什么。应维持执行癌症青少年社会化的项目, 且该项目应涵盖整个治疗过程中的健康同龄人。
Aim
To explore how an AV1 telepresence robot helps school‐aged children and adolescents with cancer to remain socially and academically connected with their school classes during cancer treatment.
...Design
Qualitative pilot study.
Methods
Data were collected through semi‐structured interviews with school‐aged children and adolescents (N = 3, 12–14 years) diagnosed with cancer, their parents (N = 3), teachers (N = 2), classmates (12–14 years, N = 15, focus group interviews) and healthcare professionals (N = 4). Participant observation was performed in the child or adolescents' homes and in the classrooms during education participation via an AV1 telepresence robot.
Results
Five themes emerged: expectations, sociality, learning, spatiality and technology. Participants experienced the robots as facilitating social interaction processes with classmates and inclusion in learning activities, reducing their sense of loneliness and lacking behind educationally. Nevertheless, multiple factors determine whether the robot is perceived as exclusive, including the technical functionality of the robot, spatiality in the classroom and mutual expectations of the parties involved.
Early diagnosis is crucial for the treatment of childhood cancer as it in some cases can prevent progression of disease and improve prognoses. However, childhood cancer can be difficult to diagnose ...and barriers to early diagnosis are multifactorial. New knowledge about factors influencing the pathway to diagnosis contribute to a deeper understanding of the mechanisms that influence this time span. Qualitative research in the field is sparse but can be expected to lead to additional useful insights that could contribute to efforts shorten time to diagnosis. The purpose of this study was to explore parents' experiences of the pathway to diagnosis in the time between their noticing bodily or behavioural changes and their child's diagnosis.
The study is a qualitative interview study carried out in large Danish hospital. Thirty-two interviews with a total of 46 parents of children with cancer were included for analysis. The children were diagnosed with haematological cancers (n = 17), solid tumours (n = 9) or brain tumours (n = 6). Data were analysed applying the theoretical model of pathways to treatment and an inductive-deductive approach. A revised 'diagnostic triage' model was developed and validated by member checking.
The pathway to diagnosis was influenced by various factors which we present as consistent parts of a new diagnostic triage model. Each factor impacts the level of urgency assigned to bodily and behavioural changes by parents, general practitioners and specialists. The model of diagnostic triage was developed and validated to understand mechanisms influencing time from the point parents notice changes in their child to diagnosis. The model identifies dynamic movement between parental triage in everyday life and professional triage in a healthcare system, both affecting appraisal and case escalation according to: 1) the nature of bodily and behavioural changes, 2) parental intuition, 3) social relations, 4) professional-child-parent interaction, and 5) specialist-child-parent interaction.
Diagnostic triage is a model which explains mechanisms that shape the pathway to diagnosis. It is a contribution aimed at supporting the clinical diagnostic process, that ultimately could ensure more timely testing, referral and diagnosis, and also a novel theoretical framework for future research on diagnostic pathways.
Aims
This study explores experiences of childhood cancer survivors and their parents with a combined physical and social activity intervention during treatment, including how the survivors and their ...parents perceive physical activity post‐treatment.
Design
A process evaluation using semi‐structured interviews.
Methods
Using a criterion‐sampling strategy, 18 Danish childhood cancer survivors (aged 11–18 years) and their parents were interviewed from September 2019 through May 2020. Data analysis used an inductive thematic approach focused on meaning.
Results
Three themes emerged: (1) being physically active during hospitalization; (2) peers as motivators and (3) physical activity post‐treatment. During hospitalization, daily motivation to do physical activity was dependent on the daily well‐being, that is, presence of the side effects from the child's treatment. Healthy classmates provided distraction, reduced loneliness and promoted normality for those hospitalized. For most of the survivors, their healthy peers provided motivation for being physically active during treatment. When surplus energy was lacking, some survivors preferred doing physical activity alone with a professional. Those who were physically active in the hospital sustained being physically active post‐treatment while their parents continued seeking advice about appropriate activity levels.
Conclusion
Childhood cancer survivors and their parents benefited from the intervention which also provided guidance to remaining physically active post‐treatment. This was particularly true for the participants with leukaemia.
Impact
Healthcare professionals should support children with cancer to be physically active during hospitalization. Including social and physical components in their care plan and being aware of individual preferences is pivotal to improving the survivors' level of physical and social well‐being during and post‐treatment.
Patient or Public Contribution
The participants were involved in designing the interview guides to ensure that the interview guides were understandable for the participants to provide rich descriptions of their experiences with a physical and social activity intervention during hospitalization.
While underlying mechanisms and pathways of social inequalities in cancer survival have been extensively examined in adults, this is less so for children with cancer. Hypothesized mechanisms include ...prediagnostic utilization of and navigation through the health care system, which may differ by socioeconomic resources of the families. In this nationwide register-based study we investigated the association between measures of family socioeconomic position in relation to prediagnostic health care contacts and stage of disease at diagnosis in children with cancer in Denmark.
We identified all children diagnosed with a cancer at ages 0-15 years in 1998-2016 (N = 3043) from the Danish Childhood Cancer Registry. We obtained comprehensive information on measures of socioeconomic position, parental health and prediagnostic contacts to both general practitioners and hospitals 24 months prior to diagnosis from various national registries. We fitted multivariable conditional logistic regression models for the association of family socioeconomic and health-related variables with firstly, frequent health care contacts and secondly, advanced stage.
We found higher odds ratios (OR) of frequent both overall and emergency health care contacts in the last 3 months before diagnosis in children from households with short parental education and mixed affiliation to work market, when compared to children with high family socioeconomic position. Further, children of parents with depression or of non-Western origin, respectively, had higher OR for frequent overall and emergency contacts. We found no association between socioeconomic position, parental health and stage of disease.
Families with socioeconomic disadvantage, non-Western origin or depression more frequently utilize prediagnostic health care services, both generally and in the acute setting, indicating that some disadvantaged families may struggle to navigate the health care system when their child is sick. Reassuringly, this was not reflected in disparities in stage at diagnosis. In order to improve the diagnostic process and potentially reduce health care contacts, attention and support should be given to families with a high number of health care contacts over a short period of time.
While grandparents are often a valuable resource in home-based pediatric end-of-life care, they may also experience psychological consequences when faced with their grandchild's illness and death. In ...this qualitative study, we performed semi-structured interviews with seven bereaved grandparents of four children with cancer who received home-based end-of-life care and died at home at age <18. Through qualitative content analysis we identified the overarching theme: "Navigating complex and unclear roles to support the family" and five themes: (1) Providing comfort and support; (2) Balancing and adapting involvement; (3) Worrying silently; (4) Managing difficult emotions; and (5) Calling for support and understanding. The findings underline the often conflicting roles that grandparents undertake of providing support while respecting parents' autonomy and putting aside their own emotional reactions. Involving grandparents in pediatric end-of-life care may enhance family resources, but should also consider grandparents' perspectives and need for support.
Aim
To explore parents’ and adolescents’ motives for accepting/declining participation in the ALL2008 trials and adolescents’ involvement in the decision‐making process.
Background
Children and ...adolescents with acute lymphoblastic leukaemia treated on the Nordic Society of Paediatric Haematology and Oncology ALL2008 protocol were eligible for two randomizations testing 6‐mercaptopurine treatment intensifications to improve efficacy and Asparaginase de‐escalation to reduce toxicity. We recently reported that while adolescents favoured treatment reduction, parents of young children favoured treatment intensification.
Design
A qualitative, exploratory study.
Methods
A maximum variation sampling strategy was used. Five adolescents aged 12–17 years, six parents of adolescents and five parents of children aged 1–12 years were interviewed in the period March–May 2015. Data were analysed using content analysis.
Findings
Adolescents and parents emphasized the importance of adolescents’ active participation in decisions regarding enrolment into clinical trials. A majority of adolescents were either final or collaborative decision‐makers. Parents stated that in case of disagreement, they would overrule the adolescents’ decision. There were no differences between motivations of preferences held by parents of children or adolescents, respectively. Decisions were based on subjective values attributed to cure contra toxicity and individual preferences for either standard or experimental treatment. The possibility of a negative outcome induced fear of decisional regret and distress by the parents, yet they invested considerable trust in the physician's expertise.
Conclusion
Our findings highlight the importance of adolescents’ active involvement in consent conferences. Research on management of disagreements between adolescents and parents in trial decisions is needed.
Although specialized pediatric palliative care (SPPC) teams increasingly provide home-based care, the evidence of its impact has not yet been systematically evaluated.
To examine the impact of ...home-based SPPC in children and adolescents with life-limiting conditions, regarding place of death, quality of life and symptom burden.
We searched Medline, EMBASE, CINAHL, PsycINFO, the Cochrane Central Register of Controlled Trials, Web of Science and Scopus for studies comparing children and adolescents with life-limiting conditions receiving home-based SPPC with children and adolescents not receiving home-based SPPC, or studies reporting before-and-after measurements. We included studies that reported on place of death, quality of life and/or symptoms. Two authors independently screened the articles, extracted data, and assessed quality. Results were synthesized as a systematic narrative synthesis and meta-analysis, using a random-effects model.
We included five studies, which reported on 392 children and adolescents. Meta-analysis showed that receiving home-based SPPC was associated with a more than fourfold increased likelihood of home death (risk ratio 4.64, 95% confidence interval 3.06–7.04; 3 studies; n=296). Most studies reported improved quality of life and reduced symptom burden. The included studies were of low to moderate quality with a high risk of bias.
This systematic review suggests that home-based SPPC is associated with increased likelihood of home death, and might be associated with improved quality of life and reduced symptom burden. The small number of studies and an overall high risk of bias, however, makes the overall strength of evidence low.
Background
Physical activity (PA) may reduce risks of late effects in childhood cancer survivors, yet many have low activity levels. Using the WHO's International Classification of Functioning, ...Disability, and Health for Children and Youths (ICF‐CY) as a conceptual framework, we aimed to identify perceived barriers and facilitators to PA in young survivors and their parents.
Design/methods
We conducted individual, semi‐structured interviews with 63 survivors, aged 9–18 years, ≥1‐year off treatment, and 68 parents, recruited from three pediatric oncology departments in Norway and Denmark. Interviews were analyzed inductively using thematic analysis to identify barriers and facilitators to PA, which were mapped onto the ICF‐CY model components; body function/structures, activities, participation, and environmental and personal factors.
Results
Two‐thirds of the survivors described how treatment‐related impairments of bodily functions (e.g., fatigue, physical weakness, reduced lung capacity) caused physical limitations, reducing opportunities to participate in PA, especially team sports and school physical education. This resulted in a perceived ability gap between survivors and peers, reducing motivation for PA. These PA barriers were moderated by environmental factors that facilitated or further hindered PA participation (family, peer, and school support). Similarily, personal factors also facilitated (acceptance, motivation, goal setting) or hindered (anxiety, low motivation, and lack of trust) PA participation.
Conclusion
Treatment‐related long‐term or late effects represented significant barriers to PA as their functional consequences reduced survivors’ capacities and capabilities to be active. Environmental and personal factors acting as facilitators or further barriers to PA were identified. Applying the ICF‐CY framework in clinical practice could help to enable PA participation.
Aim
To explore the potential of a structured active play intervention to promote social and personal development in preschoolers during cancer treatment.
Design
A hermeneutic‐phenomenological ...inspired explorative study.
Methods
Participant observations were conducted on 15 consecutively sampled children (aged 1–5 years) from April 2021 to April 2022. Observations were written as narrative scenic descriptions from field notes and were analysed inspired by hermeneutic‐phenomenological analysis and using a thematic analysis structure.
Results
Observations were carried out during 67 group or individual structured active play sessions, resulting in 129 scenic descriptions. Observations of the children's emotional, verbal and bodily expressions and social interactions resulted in three main themes: (1) wanting to play, (2) gaining confidence in movement and (3) being part of a group. The findings showed how children, irrespective of age and the severity of their illness, wanted to play and expressed joy of movement. The children's daily physical state fluctuated and influenced their motivation to participate as well as their confidence in their physical abilities. Through structured active play and with support from their parents and healthcare professionals, the children had successful movement experiences and regained confidence in movement, supporting their personal development. Playing together with other children and accompanied by their parents, healthcare professionals supported the children's opportunities to practice social skills, such as turn‐taking, waiting and taking charge. Familiarity, recognizability and fun were key motivational components for the children.
Conclusion
Participating in structured active play during treatment has the potential to promote personal and social development in preschoolers with cancer. Parents play a crucial role in supporting the participation of their children.
Implications for the Profession and/or Patient Care
The healthcare system and healthcare professionals should provide opportunities for preschoolers with cancer and other illnesses to participate in structured active play.
Impact
What problem did the study address? Cancer treatment affects the development of preschoolers’ gross motor‐, personal and social skills—essential skills in childhood development. This study aimed to explore the potential for social and personal development through structured active play.
What were the main findings? This study found that preschoolers want to play, and participating in structured active play can support their personal and social development through regained confidence in movement and becoming part of a group.
Where and on whom will the research have an impact? The research impacts healthcare professionals working with preschoolers in the healthcare system. Creating opportunities for preschoolers to participate in structured active play throughout treatment can promote personal and social development.
Reporting Method
The study adheres to relevant EQUATOR guidelines and is reported according to the Standards for Reporting Qualitative Research (SRQR) checklist.
Patient or Public Contribution
Participants in this study were preschoolers with cancer and their parents. No public or patient involvement in the design of this study.
Trial and Protocol Registration
ClinicalTrials.gov: NCT04672681. Registered on December 17, 2020. https://clinicaltrials.gov/ct2/show/NCT04672681.
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